Rehabilitation: approved or denied?

Today is like most days. Except for the fact that i'm feeling a down a bit more than usual. As some of you may have known, I just finished my first year of my Public Health Master's degree. Unfortunately, I have to take more time off to continue my search for proper treatment. The past year was really hard, and I barely scraped by. I did 99% of my classes online, while I patiently waited for the healthcare system to organize some type of assistance for me. My last doctor's appointment was in May. I saw a young and seemingly intelligent shoulder specializing  surgeon.

He quickly agreed that I needed an MRI arthrogram, but also let the wind out of my sails when he said regardless of its findings, conservative treatment was the best bet for me. Man, what does a girl in Finland have to do to be rehabilitated? Every day I am still shocked and amazed that this happened to me. Why? How? I was just a normal person who exercised a bit too much, and now I live my life from the couch or being driven around to coffee shops or shopping malls. Okay, I also have a connective tissue disorder. BUT WHY CAN'T IT BE MANAGED? Why do I feel like a second class human-being when trying to get help for a problem that I didn't ask for?

The surgeon gave me a cortisone injection which initially caused me severe pain, but in the end... May was the best month i'd had in quite a while. The injection is completely worn off now, but It was pretty amazing.

Since May the following things have happened in terms of treatment:

1. I saw a shoulder surgeon.
2. I post-poned my MRI arthrogram 2 times, but it's rescheduled for September 5th.
3. I was re-evaluated by a physical therapist who said he couldn't help me at the request of the Helsinki city planner.
4. I was re-evaluated by my local healthcare station by a physiotherapist who doesn't speak English and doesn't understand my condition. I'm not complaining really about the language because it's my fault that I don't speak Finnish properly, but after all this couldn't you make it a bit easier for me? She's the person responsible for writing my new rehabilitation plan for KELA. But Amie didn't you already have a rehab plan? Why, yes I did. But HUS made it and then trashed it when Kela said, " It doesn't make sense because i'm actually fine".
5. I have applied for demanding rehabilitation (in a facility) based on this estimation from my healthcare station. Still waiting for KELA to tell me that i'm fine.
6. I had some test results that showed my liver is inflamed.
7. I've had a ton of gastrointestinal problems.
8. My anemia is back, and definitely has a vengeance.

I feel really discouraged. More than usual. I'm not entirely sure what I am supposed to do now. I can't use my shoulder, almost everything I eat makes me sick,  I can't sleep due to pain, and walking has become a disaster again. I've had a bit of a flare-up since I was evaluated by the physiotherapist at my health station. She tried neck traction, and I have been in pain ever since. That was about 3 weeks ago or so.

On a positive note, I did make it to a short holiday to Munich, Germany. I really feel like this was some type of miracle. Adrenaline meets a miracle. I patched myself up with heating pads, medications, and took it easy. My trip actually went okay. I was in some pain, but I made it. I think this also played a role in how i'm feeling now.

In addition, my fave physiotherapist has been on holiday all summer, and now he's back to clean up the huge mess that I am. I'm not sure what my future holds for us either. I've gotten somewhat better with him, but no major advancements. I credit him with my ability to function at all, and that says a lot. He's really amazing.

I'm still perplexed and confused about the state of my health. Sometimes, I feel like this is some sort of nightmare that I haven't woken up from! I truly cannot understand why the left side of my body has virtually given up. I'm so afraid the arthrogram won't give me any answers and that my body has just literally given up on ever working properly.  If i'm in this much pain now, what will happen in 5-10 years? I'm really afraid. The longer this goes on, the more likely I think this may be my lot in life. I don't feel as positive as usual, just really devastated.

I'm expecting for KELA to deny me again. Although, I really and truly need this care. KELA doesn't care about my condition or pain. Which is unfortunate, because I really need their help. I know i'm not alone in this endeavor. There are so many of us scattered around Finland who are denied the care that we need based on someone's decision who just sees us as a name on a paper.

We all have rough bouts, and this is mine. I will continue trying to stay positive, and I urge anyone reading this to do the same. None of us asked for this burden of illness, but we have to remain faithful that will turn out the way they are meant to be. We cannot lose hope. And we can most definitely not stop fighting and advocating for our own care. Whatever you situation may be, keep on keeping on.

Until the next update!

Best wishes,

Amie

Rinse and Repeat

And it’s one more conversation with a doctor that proves to be just as painful mentally as this physical condition that I’m dealing with. As you are aware from my previous post, my doctor was supposed to call me on Monday to give her treatment plan and advice after meeting with the specialist team at Peijas Hospital. She didn’t end up calling on Monday for whatever reason. However, she rang me today, and after a 35-minute conversation, I think we may have gotten somewhere.

She told me that she discussed my case in her meeting. The first question she received after presenting my case from her the board was, “Why isn’t she working?”. At first, this made me feel extremely furious. But when I really thought about it, this one question gave me a lot of insight as to why my case cannot proceed any further in the public health system. Granted I ended up in this office due to narrowing down my most acute problem area to my left shoulder, I realize now that the doctors truly fail to recognize and understand that based on the lack of treatment for my shoulder, my entire body has suffered. Break one part of the system, and the entire system will collapse. It’s not rocket science.  The second question that stood out to me was when she asked me for the third time, “How did this begin again?”.

I’ve explained this over and over again. Sometimes in extreme detail. Sometimes the abridged version.  But hey at least she is asking because she wants to help, right? This problem began slowly, and then all of a sudden. I exercised too much, I got too fit too quick, because my stress level was so maxed that all I did was exercise. At this same time, I got orthodontic treatment, and that was a catalyst. I don’t know what happened. No one knows what happened. I don’t think there will ever be an answer. The only explanation I have ever gotten is Ehlers-Danlos Syndrome. That’s it.

But as a logical person who has spent countless hours researching my symptoms and pain, I know this doesn’t’ add up. I’m well aware that I possess signs of hypermobility that affect the way in which I move. I’m also aware that something triggered this because where was this the rest of my life? I'm not saying I don't suffer from EDS, but what I am saying is that I have an acute shoulder problem that needs to be addressed after many years of neglect.  After years and years of trying to pinpoint the problems origin, my shoulder (hopefully) is the last stop or at least the first stop on a true road to recovery. Well, if one does exist. 

We went back and forth for a while. I could see that she was trying to see me as a human, and not some lazy foreigner trying to collect a check from the Finnish government or get out of work. Because I really feel that’s how I am perceived at times. Not by everyone, but by many, especially by the same institutions and healthcare advocates who are supposed to help people like me. I have had 1091098 rehabilitation plans, but I am not rehabilitated. Not because I don’t want to get better, but because the baseline problem has not been figured out. Without changing the underlying issue, we cannot change the results. This is such a painfully irritating and frustrating situation. But logically, this is the truth.

I told the doctor that I picked up the MRI photos and I plan to see Harri Heliö (private shoulder surgeon) in 10 days. She said if I were you, that is what I would do. I don’t think she’s supposed to suggest that, but this is what I mean. Being seen as a person, and not this piece of paper full of problems. She recommended this type of physio called psycho-physiotherapy, which is just her only other idea because she recognized that sending me to some person that gives me a paper with exercises is not going to help. We both know this isn’t the solution. The biggest outcome of this was that she wants to send me to the shoulder surgeon, back to the place where my doctor at Orton originally tried to send me, and here we are again. Round and round we go in the Finnish medical system.

The good news is that she will send the referral again back to the orthopedic surgeon, but the other stress is that they may not accept me. Although, last time they said they would take me if I were actually referred back. 

Here we are again-sitting, waiting, wishing.

I’m not terribly disappointed with this, but It’s just frustrating as hell. This problem whatever it is has cost me so much. My ability to work, go to school, walk, take care of myself, etc.

It has cost me friendships, caused depression, put a ton of space and mistrust between me and almost everyone I know. It’s isolating. It’s so unfortunate that this has happened to me, and sometimes so difficult not to completely lose hope.

I wish my MRI showed I had a huge tear in my shoulder, or there was a paint by numbers sign of problems revealed in pictures, but there isn’t. I can’t help that, I can’t change that. I don’t know who is to blame? My own theory is that this injury has existed for years and my body just tried to protect itself, which leads to huge muscle imbalances and functional disabilities. But no one gives a fuck about functional disabilities. Just as the doctor told me today, when the pictures don’t’ show enough, even if there are serious problems, it’s hard to figure out the next steps.

At the very baseline, I deserve better than this. My life has worth, and I will continue looking until I find a solution.

Hopefully, the next time I write, I will have good news to share. Until then, thank you for reading.

Warm wishes,

Amie

No Surprises...

Working left shoulder 2015

Today, I'm feeling slightly defeated. Not completely, but just very tired of this never-ending situation. This isn't really a new feeling, but it's no less maddening.  Of course, this is directly related to the phone call I was anticipating from my physiatrist ( Tuisku).  It will probably come as no surprise that the verdict of my previous testing was inconclusive. My EMG was completely normal, and for once I feel like the test was done properly by an experienced doctor. The X-ray was also totally normal. The MRI on the other hand... there were some issues.  Let's talk about that first.

MRI Results 

The original referral for my MRI was done by Dr. Kokkonen (from Orton Hospital, which if you will remember is privatized) who asked for an MRI with contrast media. The second referral was by my doctor at Peijas (Dr. Tuisku), who also asked for the MRI with contrast. When I showed up for the test, surprise there was no contrast. When I inquired to the nurse about it, I got cut off every other word and reprimanded as though I were a child. When I asked Dr. Tuisku about it on our phone call this week... she said that the radiologist makes the final call. Honestly, the importance of contrast material in my particular situation is vital.  I really can't understand what the radiologist could have been thinking? Maybe they saved a few bucks? 

What was found on the MRI was fluid in my subcoracoid bursa and subacromial bursa. Everything else appeared normal. I suppose I can mention that I have a Type II acromion. This means the shape of my acromion puts me at risk for impingement and other pathologies. However, that's the only significance from the report. 

These findings angered me for the following reasons: ↓

1. The contrast material would have given better imaging results because it enhances the quality of the MRI picture. This shows details that cannot be seen in a normal image. Technically what I really need is an MRI arthrogram. This would provide contrast directly into my shoulder joint followed by an MRI. This image is the absolute gold standard in shoulder instability diagnostics. 

"Compared with conventional MR imaging, MR arthrography improves diagnostic accuracy because contrast material can fill the labral defects in nondisplaced lesions and outline abnormal capsular contours (64). ABER positioning may further increase diagnostic confidence by transmitting tension from the IGL to the labrum, thereby displacing an occult lesion from the glenoid rim or revealing an intact periosteal sleeve (101) (Fig 2)" (Bencardiono, Gryfopoulos & Palmer, 2013). 

2.  I have a special circumstance with my shoulder in terms of instability. There isn't any sign of direct trauma, I don't have dislocations, but I do have recurrent subluxations, and mainly my shoulder doesn't function properly. In fact, I have one the most difficult shoulder conditions to properly diagnose. 

 "Because the degree of subluxation may be minimal, this condition has also been described as occult recurrent subluxation, relative instability, functional instability, or microinstability (62,102,103,106,107). The clinical presentation can be confusing due to nonspecific symptoms and equivocal signs at physical examination. Imaging findings may also be subtle or equivocal (63). When imaging is requested, referring physicians may question the presence of rotator cuff tear, impingement, or superior labral tear rather than implicate instability (103). Because the clinical indications can be misleading, radiologists should consider the prospect of glenohumeral instability during the interpretation of most shoulder MR imaging studies performed in young adults..." (Bencardiono, Gryfopoulos & Palmer, 2013). 

The rest of the Call...

Nothing great came from this call. She delivered the news and told me she didn't have a plan for me because this situation was so complicated. She told me that she meets with a specialized working group of other physiatrist, surgeons, etc., and they would discuss my problematic case on February 5th (Next Monday). 

I asked the following questions when I spoke with her.

1. "Why wasn't there contrast media as requested?".  Response- " The radiologist made the call. I don't know". 

2. "Are you certain this imaging was the most useful/appropriate for my condition". Response- " I don't know". 

3. "Why do you think I should go back to physio since I have paid 4000 euros to Orton Hospital since last May. How do you think more physiotherapy on the public side ( which is less specialized) will help my situation?". Response- " I'm not sure". 

On the bright side, she did say that the imagining doesn't always show the "full picture", and clinically there is a lot going on that is complex. She said that seeing a surgeon wasn't out of the question and that I probably should, but she wasn't sure what would happen until after the meeting. In contrast, she said that nothing in this picture could be surgically repaired. But the truth is, this picture doesn't show the whole "picture", she's not a surgeon, and that radiologist has no idea what my clinical picture looked like. To he/she I was probably just a stack of images that needed to be done. I am not encouraged or heavily inclined to trust this public system. Look what has happened to me when I blindly followed them down the rabbit hole. She did also admit neglect on behalf of the other physiatric hospital. It was directly, but it was highly insinuated. 

The top picture is fitness with instability. 3.5 years later when the instability won. 

Many people including my friends and or family do not understand my situation, even if I explain it to them. I have to say that's really difficult. I'm also really difficult. I'm angry a lot lately. Not at anyone, but at this entire situation. It's so incredibly frustrating, and sometimes I literally just want to disappear. I'm not very good at disappearing acts, so I just keep coming up with new solutions. And the bottom line is that I refuse to accept this treatment because I don't believe it's right for my situation. I refuse to go against my own gut feelings, even if this has taken years to get to this point. There are two sides to this coin though. Either I am right, and eventually, the actual problem and solution will be found. On the other hand, I am wrong and I have a connective tissue disorder that cannot be corrected surgically or otherwise. I have to continue doing rehab, and likely this situation will improve very little or very slowly over time. I have a seriously difficult time believing that this is my lot in life. That I need to accept this disability completely- as is.  This happened to me over a period of years, as I was begging for help and got dismissed. I was extremely fit and still having trouble controlling my shoulder instability/pain. Doesn't that point to another issue? I do understand that conservative therapy is the first solution for this particular situation, but it's not like I've been on a Hawaiin vacation. I've been working for years to correct this issue with very little improvement at all.  Not to mention, I have an issue with my left hip/leg. I think these come as a package that began with my shoulder problems in 2014/2015. This is just my theory. 

I did take the liberty of booking a privatized surgeon who specializes in complex shoulder issues. He was recommended by my physiotherapist and appears to be one of the top surgeons in this region. His name is Harri Heliö. I guess he will decide if this situation is surgery worthy, or if I have to bite the bullet and continue conservative therapy. I've purchased my images from Peijas, and I will meet with this surgeon in 2 weeks.

My physiotherapist is quite confident that he can find a surgical solution for my shoulder instability but has warned me that surgery comes with a price, too. I have thought about this quite a lot. I guess the best thing I can do for now is to wait for more information from both my current doctor at Peijas and to see what the surgeon will have to say about my situation. I do not particularly want to pay for this surgery. Mainly because I shouldn't have to, and I really can't afford it. But if I have to choose between getting some percentage of non-painful use out of my body compared to a few thousand euros...I will choose my body any day of the week. Living in this prison has been something I would not wish upon my very worst enemy. The frustration and depression from this situation have been exceptionally difficult but I'm still looking for the light at the end of the tunnel. 

I'm not sure who is reading this blog, but I just want to take the time to thank you. For whatever reason you stumbled upon this, I appreciate knowing that someone is taking the time to read about my journey. 

I will update when I know more. Until next time. 

Warm wishes, 

Amie 

References: 

Bencardino, J. T., Gyftopoulos, S., & Palmer, W. E. (2013). Imaging in Anterior Glenohumeral Instability. Radiology, 269(2), 323-337. doi:10.1148/radiol.13121926

Physiatrist Appointment 1/26

Friday was the big appointment. By big,  I guess I mean the appointment that finally took me back into the Finnish public health care system with my shoulder issues. I'm not entirely sure why I put any real expectation into these appointments anymore. However, I was hoping that this appointment would actually have some impact on my care.  I have been to countless doctor's appointments, so it's really not surprising that my friends and family don't always inquire about the outcomes. I know it's boring and redundant, but I still have to go, and it hurts that my support system has dwindled over the past few years. I truly understand, but it doesn't make it any easier. I suspect this dwindling of support is due to the fact that I have spent a considerable amount of my time visiting medical specialists with no concrete answers. I also talk about this a lot more than I should.  If my friends and family are exhausted from this, imagine how I feel. I've really only brushed on how this feels emotionally, but it's hard. It's completely isolating. At times I even feel embarrassed to write this blog, but you know at the end of the day, this is my story and I really shouldn't feel shame about sharing that. It's a constant struggle between wanting to be an open book and wanting to completely pretend everything is fine. Being ill isn't my entire life, but it does dictate what I can and cannot do. This illness is unpredictable. It controls my moods, my sleep, and what I do from day to day. Sometimes I feel positive, and sometimes I feel hopeless. This is a difficult situation, but just because I suffer from chronic pain, it doesn't' mean my life isn't meaningful and I don't enjoy it as much as I can. This is really me living my best life with these circumstances. This blog isn't very sunshiney, but it's only one aspect of who I am. Trust me, I'm a lot more than this condition.  You probably came here to actually learn what happened on Friday. So here it goes!

 Here's what happened...

At 9:50 am on Friday, my partner drove me to Peijas Hospital. I checked in and entered the waiting room of the Physiatric Clinic. The doctor called me back 18 minutes late. She introduced herself (Dr. Tuisku), and I entered the room and sat down. The doctor was fairly young with blonde hair and a friendly (but serious)  face.  She spoke with a sort of Australian/New Zealand style accent. Her English was good, and I'm guessing she studied abroad somewhere around there. I still tried to speak clearly and slowly to avoid any language confusion. I came prepared with the questionnaire that was sent a few weeks back. The standard body/pain chart, previous meds, etc. I even took the liberty of typing out my answers. We went through the same old, same old. She asked about my background. I divulged. She said, "Wow, you have a lot of text here (referring to the online system from previous appointments) and I haven't been able to read it all". Then I explained the same old story as I have so many times. I slowly explained everything that would fit into the considerable timeframe, but obviously, I always forget some details.  I brought up the EDS diagnosis, and as she touched my hands she says, "Oh, you're very flexible".  I'm very accustomed to hearing this exact response. She asked me multiple times if I had any joint or movement problems when I was younger. Which I replied, "no".  I have never had any medicals issues besides an injury to my chest when I was in high school, and a hand injury/surgery when I was in college. I asked her if my shoulder pain was EDS related and she said that she didn't think so. This wasn't assuring or comforting at all.  If it's not that, then what? This is the million Euro question.

She asked me to remove my shoulder brace and shirt. These days I'm wearing mostly button-ups since it's difficult to raise my arms above my head. It's also a good way to hide my brace. She bent my left arm in several different directions and performed several different maneuvering tests. Each time I have these tests it provokes pain for several days, so today I'm still suffering from Friday's testing.  I've been through all of this before, and it feels really familiar. She found the severe weakness on the left and muscle thinning (which is nothing new). She looked completely puzzled and said three times that this is very complicated. I immediately shared that I believe surgery is my best option, and she said that surgeons wouldn't want to take my case because the outcomes have been so poor here in Finland. She suggested that in the end, she'd probably recommend more physiotherapy to which I raised my voice and changed my tone immediately. I've been in physiotherapy for years, I don't think she really understood. There's no way that I will agree to more physiotherapy unless there is a set timeframe. For example, they actually provide the care, and if and when it doesn't work (I will see a surgeon). I've been in specialized care in Orton since May! Why does she suddenly believe that continued physiotherapy is the complete answer? Also, my physiotherapist is highly educated and experienced. Could anyone else really do better?  I understand surgery is a last resort, but aren't we here now? I didn't' voice all of these concerns because this appointment would have immediately turned into something else, but I did show my disdain for this suggestion. She then said, she wasn't sure about anything and she's not a surgeon".  I'm not sure if that was to comfort me, or further insinuate that she's also unsure of the underlying issue.

http://dev.netzbarkeit.ch/sarkomboard/content/medial-scapulectomy

I asked for her initial thoughts, she said there could be something wrong with my Accessory nerve or Long Thoracic Nerve. She was especially interested in my laterally winging left scapula but also failed to diagnose that in the online portal. I did end up with another diagnosis. This time M75.1 (in the ICD-10 codes), which is listed as Rotator Cuff Tear or Rupture (non-traumatic) and related to Rotator Cuff Syndrome and/or Supraspinatus Syndrome. This is the first time I've actually had a diagnosis that pinpoints my shoulder that is NOT just shoved under EDS or TOS. This is good, but what will it actually mean for my treatment plan?


We didn't talk about this at all, I only saw it when I came home to check the online portal. She ordered an MRI (magnetic resonance imaging) with contrast, An X-ray of my thorax, and another ENMG test (electromyography).  I immediately went to the X-ray, but still awaiting the results. The other test dates will come in the mail, hopefully, this week.

I'm not sure how I feel about this appointment. I think it went as well as it could. I really want to be sent to a surgeon. I have almost considered going privately, but then there is the question of financing surgery at a private hospital. I'm hoping that these test will reveal the issue with my shoulder, and the doctor said that these should show the underlying problem. Fingers crossed that all the stars align and the true cause of these issues will finally show up. It will be almost 4 years later, but better late than never.

Physiotherapy & Allergy Referal 

In other news, my physiotherapy was denied from the Rehabilitation Clinic. (The English translation of their response).

HYKS The Rehabilitation Research Unit does not have the resources to undertake medical rehabilitation, and HUS does not issue commitments for medical rehabilitation that KELA has rejected. Thus, the physiotherapy site will have its own health center where, at the end of the current physiotherapy phase, the physiotherapist can evaluate the need for further physiotherapy and develop a new physiotherapy plan that can be implemented at a health center. ". 

It's really interesting how they had the funds to send me to occupational therapy (which in this situation didn't help at all), but not the actual physiotherapy I need. This is also their rehabilitation plan that they are refusing to honor. I truly do not understand. Let's see what my health station responds.

In my previous post, I mentioned that I had been referred to the Allergy Clinic to test for some type of allergy to local anesthetics that contains adrenalin. This referral was also denied (which I didn't even know was possible). This was on the basis of, " There's nothing they can do about it".  To me, this isn't really a big deal. I have so many other things going on that are much more important. I just wonder if I have some reaction, will it get worse? I'm not finished with the Surgical Hospital and the need for local anesthetic. Also, if I have shoulder surgery won't there be local injections that could invoke the same responses? All these rejections just seem to wear me down. It sometimes feels like I'm not worthy of care, or for some reason, no one (as in the medical system) cares about my health issues. I'm extremely grateful for the care that I receive, but the mental blowback of this is really devastating. I really try not to take it personally, but I just want to get better. I don't think that's a lot to ask.

That's all I have to report now. I'll be back when I have a few more answers or if I need to do some rambling. Thanks so much for reading!

The one with the needles.

 I had my first medical appointment of the year on the 15th. I visited the Surgical Hospital for continued treatment for the correction of my occlusion. Yesterday was the postoperative appointment for my most recent outpatient surgery. There's not a lot to report, but I want to try to be more thorough. I also left this appointment with a new referral.

I am currently seeing a prosthodontist. Her name is Jenni. She's previously been in charge of my night guard, and now she has been working on my implants and raising my bite. As I've mentioned before my bite has remained open since my original jaw surgery. This isn't exactly an ideal position, so they're working to get the best occlusion possible for me.

During yesterday's appointment, Jenni noticed that I had a random gum flap growing above my implant screw.  I noticed this about a week after my surgery. We called the surgeon who performed the last procedure, and she said it was perfectly normal. I guess this particular gum flap was kind of odd because Jenni said she had never seen anything like it. With that being said, she had to anesthetize me and cut it away with a laser. I'll be honest, dental procedures still freak me out. Yes, even after all of this. However, I wasn't too worried about this tiny procedure. I've had so many needles. I've had my entire maxilla removed, repositioned, and screwed back to my skeleton.  Anything else is pretty much a piece of a cake in comparison. So here's where things get interesting.

She begins the procedure by gently inserting the anesthetic into my gum. About 2 minutes later I begin shaking all over. This shaking is all too familiar. It's like I'm suddenly freezing, but I'm not. My hand's jerk around and my legs noticeably tremble. I was wearing my Apple watch, so I quickly checked the heart monitor. My pulse quickly jumped up about 30-40 beats per minute. Jenni got pretty alarmed, and the dental nurse just watched in surprise. They suggested to call a nurse into the room, but honestly, this happened before and I just attributed it nerves. I wasn't nervous or upset, but the likely answer to this issue has been in plain sight this entire time.

Jenni suggested that I may have had a bad reaction to the anesthetic. I don't remember the brand that was used, but it contains adrenalin (like most). Adrenalin is used for a variety of reasons in medicine. I believe it is generally for serious allergic reactions, cardiac issues, and low blood pressure.  It's also a naturally occurring substance in the body ( hormone and neurotransmitter). It's used often in dentistry because it's a vasoconstrictor to local anesthetic solutions. This slows down the systemic absorption, which in turn prolongs the anesthetic effect. This also translates to cheaper and more effective.

I began to think back about how often these tremor-like episodes have occurred. She also began to ask me about the last procedure. I guess she was also trying to connect the dots.  Especially since I had severe tremors for about 3 days after my Maxilla advancement ( first jaw surgery).  She also explained they used a significant amount of local anesthetic along with general. That explains a lot. This conversation was taking place while I was having impressions taken so I couldn't speak very much. Afterwards, I explained to her that before the last procedure (outpatient surgery), I took diazepam to help relax my jaw. Therefore, I didn't have the shaking episode, but I did profusely sweat. The time before that I was under twilight sedation, so I don't believe anything significant happened. Although, I did wake up once abruptly with severe pain in my arm. Each time that I have had any significant dental work, I have been sedated, so it's difficult to really understand the if this is the cause. It seems likely.  I haven't received an appointment date yet for the Allergist, but I will update my blog once I know when I'll be going. I think this is an interesting theory. It would also be really good to know if there is some type of allergy or reaction to anesthetic because I'm quite sure I'll have more surgeries this year. Not dental, but if I'm really not interested in any other complications. This was a great catch, so kudos to her.

On another note, I'm still waiting for my appointment at the Physiatric Polyclinic at Peijas Hospital. I've been thinking about it a lot. Stressing about it mostly. I've almost been making a presentation in my head. How do I present my symptoms in a way that this doctor will not immediately dismiss me? Also here we are again, me telling this long-winded backstory. This thought alone is extremely stressful.

Will she take Dr. Kokkonen's referral at face value or will she attribute everything to Ehlers-Danlos Syndrome and send me away? The referral asks for an MRI with contrast. I hope she will at least honor this. As we know I haven't had the best track record with the public system, so fingers crossed. I'm seriously hoping that this will go well. These past few weeks have been a bit rough ( as usual). I have shoulder pain every single day. It's usually paired with facial pain, neck, headaches, sinus pain, tooth/jaw pain, hip pain, fatigue, upper GI pain, and sometimes peppered with depression. I haven't done very much in 2018. Mostly just physical therapy, a few friends have visited, and I've been trying to stay positive.

Physiotherapy on the Public Side & Kela 

My last post was so incredibly long, I'm not sure if I explained my physiotherapy situation accurately or clearly. I mentioned that I currently go to private OMT physio at Orton Hospital, and it's pretty expensive. The Neuro Polyclinic made a plan for me to continue at Orton, but in order to so, I had to apply to specialized physio through the public health scheme. I had to apply through Kela. This is Finland's Social Security system. I have had significant battles with these guys for the last few years. This situation is no different. Kela recently denied my rehabilitation plan suggesting that my symptoms and diagnosis do not match. This is infuriating. They also suggested that I go back to my local healthcare center and ask them to assist. The main issue here is that OMT or manual physiotherapy is not available in public healthcare scheme. Therefore, they cannot offer it. However, they are required by law to honor this rehabilitation plan. This means they have to assist in paying for my private physiotherapy or provide adequate physiotherapy for my condition.  In the past 7 months, I have paid around 3000 euros or more. This is truly unfair. Every Finnish citizen or permanent resident should have access to the care they need at a reasonable cost (At least by Finland's standards).  It's not like I am asking for anything that doesn't belong to me. It's more like demanding the care that I require and deserve.  My primary physician has sent my plan back tot he Neuro Polyclinic, so I am waiting to hear if they come up with some type of solution. All of this bureaucracy is insane. I can imagine many people give up. Not me. I have already gone forward with a legal complaint against Kela's decision, and I'm definitely not done. Let's see how long this takes to sort out? They have had the referral at least two weeks already.  The clock is ticking!


I'll update again very soon. Thanks so much for continuing to follow my journey!

Best wishes,

Amie

The One With The Jaw Surgery (2016 & 2017)

Hi guys! It's been an incredibly long time since I have posted any updates. If you're actually gonna make it through this post, get comfortable and grab a cup of something you love. This is going to be very long. Since my last post in 2015, I have had my jaw surgery and two other minor surgeries that followed. I apologize to those of you who reached out to me and I never responded. I mainly stopped posting because this is such a personal journey. It has had so many ups and downs, and often they are totally unexpected. This blog really started as a way to track the changes that were happening to my jaws/teeth. It's crazy how it ended up being something entirely different. 

Please remember how difficult it is to share these very personal details of my life. There is always the fear of judgment, the loss of privacy, vulnerability, and so on. So please be kind. 

During the time that I have written this blog (and the Instagram account which has now been changed to Bracesjawsandjoints), so many of you have reached out to share your stories with me. I really and truly appreciate that. This is why I figured, I owe it to you and myself to continue sharing my journey. This is my complicated story. I hope by sharing it, I can help others who are in similar situations or struggling. You are not alone. It's a long and confusing process, but here it is in black and white. 

Jaw Surgery

 I had my actual jaw surgery on June 14, 2016. This was after waiting an additional year because my surgeon was confident that I had some type of neuromuscular or autoimmune illness. She sent me to a neurologist for testing, but I'll talk about that a bit later. The Le Fort 1 (with rotation) took around 4 hours. Everything went well during the surgery, but when I woke up that was another story. One of the first noticeable issues after my surgery was this strange tremor-like shaking. My teeth were chattering and my arms and legs were noticeably trembling. Similar to the when you are cold, but I wasn't. This lasted for a few days. No one can explain what happened. I was told later that the surgeons had issues intubating me because I was trembling so much before the surgery. They administered some type of tranquilizers, and apparently, that was enough to continue with the general anesthetic. There were some theories about what this was. One of the surgeons told me it was the anesthetic. That doesn't really make sense because I was shaking before I took anything. Another doctor later told me that it was my central nervous system being overloaded. That makes the most sense, but let's continue because it's likely that I will never know the answer. There was also some trouble getting my vitals to stabilize. My heart rate was really high, and my blood pressure was very low. I was so incredibly sick. I threw up for the first day. Mostly blood. Bags and bags of blood. I was miserable. They tried several different medications to stop my nausea, and thankfully I was loaded up with pain medicine and fluids. The third anti-nausea medicine (typically used for chemo patients worked) and I was finally able to rest. I also developed an odd raised rash across my chest, but it was apparently a reaction to some of the medications. However, we still do not know which one. Below you will find the first of my photos. Initially, there wasn't a lot of swelling, but about 12 hours later my face blew up like a balloon. If you'd like to see more photos of my surgery, please check out my Instagram (Bracesjawsandjoints).  Going into the surgery was extremely scary because of my other symptoms that were thought to be related to Ehlers-Danlos Syndrome. Despite this, I did it anyway. I really couldn't go on with the severe bruxism, facial swelling, pain, sleeplessness, etc. Besides, what did I really have to lose? There had to be some type of solution, and for me at the time- this was it. 

Directly after I woke up from surgery

The many faces of my surgery

Braces off in December 2016

After the Surgery, I stayed in the hospital for 5 days or so.  Eventually, I was able to take a shower, eat some pudding, and drink a little coffee. I started to feel more human and then I went home. The following week was the hardest. Not only with not being able to eat but also this weird bloated uncomfortable feeling of swelling, pain, and weakness. To be honest, my neck pain completely disappeared, and the shoulder pain I had experienced before was very mild. I'm not sure if this was due to all of the anti-inflammatory medications/steroids/anesthesia, the inability to clench my teeth, or the fact that my entire face and nose were numb- so I couldn't actually feel any pain. I will say that it was super hard to breathe out of my nose. My nose was full of dried blood and mucus. Not only did they adjust my jaw, my nose was in a way "reconfigured", and it was a pretty nasty feeling, or should I say lack of feeling. After my surgery, I didn't have any feeling in my face for months. It was about 10 months or more before I started to be able to feel my anything sensations in my face/gums. I actually really preferred the numbness, because at least then I couldn't feel any pain. Like many people, I lost A LOT of weight. I was already working with so little, but fortunately, I have a bit of a sweet tooth and things are back to normal. :) I think my lowest weight got down to around 125 pounds, and I'm usually around 135-140. I highly suggest that you have an eating plan for your post-surgical care. For me, I drank a lot of Carnation Instant Breakfast (that my mom brought from the US), blended soups, thin oatmeal, grits, mashed apples/bananas, and pudding. My saving grace was probably Kraft Mac and cheese.  Not the healthiest, but the noodles are so soft and easy to swallow. There was also the joy of changing bands every day. It definitely gets easier though. 

Post Surgery 

Looking back, I am so glad this time is over. I had a lot of trouble chewing due to muscle tension and tooth pain prior to my surgery, so while most of the patients were going back to regular food in a few months, I was/am still eating soft foods. I am really happy with the surgery itself, and although I had a variety of problems that I'm probably forgetting to share...this surgery really helped me. It wasn't a perfect ending, but the improvements were really worth it. Due to complications with my bruxism,  I ended up having a second surgery to remove some of the hardware from the left side of my face, and to replace two teeth that I had lost due to clenching.  At the beginning of 2017, my shoulder pain returned with a vengeance. When this happened, my clenching soon returned, and I was left with a lot of facial pain yet again. This time they referred to my pain as allodynia or nerve-related facial pain. My teeth and jaws have never been the same after this process, but at least my occlusion is much better. 

During the healing process, I had some random issues. My gums of my maxilla turned completely white at one point. I had a lot of heart palpitations, severe fatigue, and so on. It ended up being related to an Iron deficiency (anemia), so I began to use a supplement and it cleared the problem up within a few weeks. At least at this point in my timeline. I also had a mucosal infection, but with good oral care, I did manage to get rid of it.  During these months ( June-December) things were going well. I thought I had finally beaten this entire thing, and I was on less and less medication and feeling 70 % better overall. I was really afraid I'd start clenching again, or the pain in my shoulder, neck, or legs would come back. I started having a bit of pain here and there, so I went to a private physiotherapist named Vilma. She was supposed to specialize in shoulder problems, so I thought this is a good way to move forward. In a way, I wanted to put all of this Ehlers-Danlos Syndrome talk behind me. I felt better, and I just wanted to move on a bit. I was having shoulder issues, but pretty mild. However,  deep inside I knew things weren't how they should be. My surgery wasn't perfect. I couldn't bite things or chew properly. I was starting to have facial pain and the swelling came back off and on. My occlusion was better, but my back teeth no longer touched (open bite). We are still working on correcting that. 

 I got my braces taken off in December 2017. My teeth and bite looked amazing. However, the dreams of having a normally functioning set of teeth/jaws disappeared. They're pretty, but unfortunately, they don't work very well. That's just the way things went, and I truly believe this is not how the normal jaw surgery goes. So if this scares you, don't let it. This case is atypical. 

On the bright side, I was finally able to sleep through the night with very little interruption, and my pain had been pretty manageable. With these improvements alone, I felt invigorated. For the first time in a long time, things were really looking up for me. 

 At the beginning of January 2017, things began to slowly change. The sleep bruxism reared its ugly head again. My quality of sleep began slowly slipping away. My jaw tension returned little by little, and this basically controlled how much I could chew or talk. The rest of the issues trickled back into place (shoulder pain, neck pain, walking difficulties). I knew something wasn't right,  but I couldn't put my finger on it. Everyone told me to "trust the process" and "listen to my doctors". In the end, I knew that I had to trust myself. 

During this time, I had also been slowly starting back at the gym under the care of my physiotherapist. I thought this was the right direction at the time but, I knew that she didn't understand my limitations and health issues. A few weeks into our sessions, she told me that she didn't' think I had EDS. This was confusing and quite upsetting. She had no experience with this condition, and in no way did I ask for her input. On the other hand, she offered a new suggestion for my pain. She was certain that I had something called Thoracic Outlet Syndrome. (Sigh) Another diagnosis. More confusion. More misunderstandings. 

Thoracic Outlet Syndrome 

So what's Thoracic Outlet Syndrome.  It's a group of disorders that give a variety of symptoms when the blood vessels or nerves between the collarbone and first rib are compressed. There are a few different types Neurogenic TOS (compression of the brachial plexus nerves), Venous TOS (compression of the axillary-subclavian vein, Arterial TOS (compression of the axillary-subclavian artery). At this point, my physio didn't diagnose me with any of these three ( because technically she can't) but she suspected this was an issue. She wrote me a statement, and just at this time I was waiting to visit the Rehabilitation unit in the Helsinki Hospital system, so I figured I

I'd just bring the write-up with me when I met the neurologist. I began to wonder if I had been misdiagnosed, or what was wrong with me. Everything felt really confusing. I wasn't doing very much. I spent most of my time watching Netflix, alone, and trying to figure out what was wrong with me. I tried to stay optimistic, but so many health things were spiraling out of control. I was wearing down my friends and family talking about these issues. It seemed like no one understood what I was going through. It was very isolating. I was feeling physically terrible and basically had no idea what to do or how to move forward. It's even difficult for me to write this because looking back, I can't believe this situation still hasn't been managed properly. 

The Very Long Journey ↓

So how did I get here? Let's start from the beginning. My Surgeon,  Dr. Stoor,  was really uncomfortable performing my jaw surgery since it's pretty major, and I needed to be in good health for the best outcome. When I was talking to her, she was pretty certain that I had some neurological problem. I asked her what she thought it was, and she wouldn't say more than, "something isn't right here". A few months later, I landed in the neurology polyclinic. 

Neurology Polyclinic : Take One 

With my surgeon's referral, I ended up at the Neuro polyclinic. The doctor was kind and soft-spoken. Her English was great, but I brought my trusty list of symptoms and explained my background for the millionth time. Each time I do this, it's so mentally draining and emotionally exhausting that I want to scream. She did an assessment and thought I could have something called Facioscapulohumeral muscular dystrophy. (FSHMD, FSHD or FSH). According to Wikipedia (clearly the best medical source), it's a usually autosomal dominant inherited form of muscular dystrophy (MD) that initially affects the skeletal muscles of the face (facio), scapula (scapulo) and upper arms (humeral). she also wanted to test me for Myasthenia gravis, which is a chronic autoimmune neuromuscular disease that causes weakness in the skeletal muscles, which are responsible for breathing and moving parts of the body, including the arms and legs. This was all so incredibly confusing. Suddenly I went from this controversial EDS diagnosis to other illnesses.  I went through several MRIs, 2 EMG tests, and had tons of blood work. This must have been the scariest time of my life. Fortunately, the doctor couldn't find any evidence of these suspected illnesses. I begged and pleaded that they look for the root of all my symptoms, but they blamed everything on EDS and tossed me away. This was relieving and disheartening.  I was still sick, and I wasn't getting any better. I can't properly explain how this event affected me, but it was so profoundly hard to be faced with all of these symptoms and no answers. At least not answers that were agreed upon. I felt myself slip further and further away from any type of normal life. I wasn't having any social interactions, I wasn't working, and things just got darker and darker. I was so frightened that they had missed something. The surgery was approaching, and at some point, I just had to let myself go through with it,  regardless of the consequences. I was truly worried if I would live or die. I was so stressed out all the time.  I talked this situation over with my partner, and before I had surgery we decided that I would go to see an Ehlers-Danlos specialist (from private healthcare) in Helsinki. I wanted to know if I had this or if I didn't. Now looking back, I realize it's not that simple. 

Ehlers-Danlos Specialist (Physiatrist) : Seppo Villanen

I made an appointment to see this specialist named Seppo Villanen at this private clinic called Mehiläinen. I had read a lot of good things about him, and people really seemed to like him. Unfortunately, this appointment didn't go very well for me. This was mainly due to language barriers. I'm not sure if he understood my situation very well. He told me that he didn't think I had Ehler-Danlos Syndrome. He thought I had some problem with my brain. Possibly, Multiple Sclerosis or Lyme Disease. He wanted to test my ferritin levels, and vitamin D.  He also recommended that I get some type of specialized brain scan in another city. He handed me a prescription for a heavy dose of antibiotics to deal with the suspected Lyme disease, and also Prednisone. He asked that I send any previous scans to his office. I left that appointment feeling completely lost and afraid. I immediately called my doctor (Dr. Silanpaa who was my primary care physician) through the public scheme, and she advised me not to take this medication. She promptly sent me for a blood test to check both ferritin and vitamin D. The ferritin was a bit low, and the vitamin D was seriously low. She put me on a vitamin D supplement, and that was that. She told me to go through with my surgery, and after I'm semi-recovered she would send me to a new neurologist. So fast forward ... and again to the Neurology Polyclinic. 

Neuro Polyclinic: Take Two 

Here I am. At the Neuropolyclinic to see an Epilepsy specialist. Why? Well, mainly because I have a majority of my symptoms during my sleep at night. I've discussed sleep bruxism in depth on this blog before, and that is kind of what led me here. I not only clench my jaw, I clench my hands, arms, chest, and stomach when I'm having episodes at night, and I guess this was one of the last straws for my doctor. She was trying to help me, and although I think we were both aware that I didn't have any form of Epilepsy, she sent me anyway. It was actually good that she did because this visit changed the trajectory of my treatment plan in an important way. I usually remember the names of the doctors who have significantly helped me. In this case, it was Dr. Kaisa Kotisaari. I came to her completely desperate and exhausted.  This time I brought my partner along to avoid any misunderstandings. I told my same long-winded story of symptoms. She was so incredibly patient, kind, concerned, and empathetic. Probably one of the nicest doctors that I have ever encountered. She told me that I was lost between specialties and sometimes this happens to people. She assured me that my pain was real and I wasn't crazy. This was so reassuring to hear. A doctor who really wanted to help me, but what could she do? Guess what? It turns out, I don't have epilepsy. Shocker. During this appointment, the doctor abruptly left the room to consult a colleague and returned to inform me that she would refer me to the Research and Rehabilitation Unit. I had no idea what this meant, but she was so nice and I had high hopes that this was going to be helpful. I thanked her profusely and came home feeling more hopeful. 

Research and Rehabilitation Unit (Neurologian kuntoutustutkimusyksikkö) 

I had no idea what this was going to be. What does it mean? I googled it and couldn't find much. Before I went, I thought this was going to be some type of gigantic breakthrough. This place was it. Everything was going to get better, and I was finally on the right path. In the end, I learned that this place is the unit that decides if you are able to work, or what type of limitations you might have in everyday life. This unit was supposed to find the best rehabilitation plan and implement it. During my time here I would meet the following: a neurologist, a physiotherapist, an occupational therapist, a social worker, and a neuropsychologist.It sounds a lot more promising than it actually turned out to be.  In the beginning, I had no idea how long I would be a patient here. Only in December 2017 did I finally part ways with this unit. Technically, there is a referral there currently which asks them to assist in adjusting my current physiotherapy plan, but we aren't quite ready to fast forward that far yet. 

Neurologist: Dr. Ylä-Soini 

I actually can't remember who I met first. I'll start with the neurologist. She was nice. Very matter-of-fact, which I don't mind. I prefer for doctors to be straightforward. It was difficult to talk with her in some ways, I'm not sure why. In the end, I really believe this doctor tried to help me, regardless of how frustrated I was with her at times. Maybe it wasn't actually her, but the actual process. Before I understood what this meeting was, I was ready to go in and ask for new tests. I had no idea this place wasn't diagnostic. To my surprise, I did end up in more medical testing. I think this happened because the doctor didn't believe my diagnosis was correct or complete. She actually told me she didn't think I had EDS. This was the third time I had heard those words from someone working on my case. She even illustrated this by pulling her thumb to her wrist and saying, " See I'm hypermobile, too".  This really annoyed me, but also led me to believe that she thought my treatment wasn't right. I could also tell she had no idea what was wrong with me. She did have suspicions, just like many other doctors. She sent me to another EMG and more blood tests. The EMG experience was pretty annoying. I mean the entire test is very uncomfortable, but I had done that before. I wasn't really afraid, but I had hoped this would be the very last one. Everyone blames things on EDS so much that nothing ever moves forward. It's extremely frustrating. The test began, basically to check the nerves that run through my brachial plexus for damage. I forgot to mention that I took the statement from my physiotherapist Vilma, and the doctor wanted to test for nerve issues. I think this was pretty appropriate.

 The electrophysiologist was young and seemingly nervous. This was my third EMG and I think he was more nervous than I was. The very first EMG test was given by a calm, confident, and friendly young man.  He told me that I had some odd readings, but it was because of pain. He didn't write that in his notes, but I never forget. I always wonder exactly what he meant, but this was a few years back. This time the test was rather useless. I asked for a more thorough examination, and he was basically done in 5 minutes. He went to ask advice from the head doctor, who proceeded to enter the room as if he owned it. He did a short physical assessment and was like, " Oh you have EDS so this test is useless".  Then he asked if I had headaches, and told me that I probably had a Chiari Malformation (which I do not), plus I have already seen several neurologists. The test never fully finished, at least not for what I had hoped. I wanted some testing for my long thoracic nerve and accessory nerves. At this point, that hasn't happened yet either. 

The blood tests only revealed that I had severely low ferritin. I think the level was 8 and should be above 20. This means I am not properly storing iron in my body. The Dr. started me on a supplement ( which I take on and off as I have mentioned before).  When I met the neuro again, I was quite irritated about the EMG test had gone. Especially about the head doctor who came to give his two cents.  I complained to her, and she told me to ignore that doctor. She was also noticeably annoyed. At the end of this meeting, I asked her for one more check-up at the end of the summer. She hesitantly complied with my request. After this, I wouldn't see her again, but I would be in contact with her a few times. I asked to stay in her care because it seemed that every time I was released back to my "normal" health care center I would encounter tons of issues. I wanted to stay in specialists care in case things got worse. Which is exactly what happened. 

Neuropsychologist

Out of all of my visits to the Rehabilitation Unit, this was my least favorite. I had to go through a series of memory testing, logic games, etc. I was so exhausted and annoyed. I didn't have a very good attitude at this appointment. Luckily it was only one. In the end, she found that I had memory issues due to chronic pain and lack of sleep. This wasn't at all useful for me and just made me feel worse. I guess this was a necessary protocol for this unit, but I didn't really benefit from this experience. 

Occupational Therapist 

The OT was my favorite experience. Her name was Katri. She was kind, friendly, and understanding. I immediately felt comfortable in her presence. I explained my situation to her ( as with each person I encountered). She brought me into a kitchen, where she asked me to cook an egg and make coffee. I thought this is extremely odd, but I didn't realize it was all apart of the program. She wanted to see how I worked in every life. It's probably good I didn't realize what she was doing because she was able to fully comprehend my disabilities and abilities. She noted how I stood, how I sat, how I spoke, turned, etc. This was extremely useful because this led me to the place where I would receive the best treatment- Orton ( Helsinki's Private Orthopedic Hosptial).  She referred me to a private occupational therapist named Sanna-Leena. The best part of this all is that the city paid for this. Private care here is very expensive, and this turned out to be quite useful. 

Physiotherapist

Physiotherapy has been a part of my life for the past 3.5 years. I have learned an extremely valuable lesson: ALL PHYSIOS ARE NOT CREATED EQUAL. Some are really great, some have no idea how to help, some are just not compatible, and so on. It's really weird how important a PT will be in rehabilitation. If you don't mesh well or click - the relationship doesn't work. This therapist was very nice and friendly. We discussed everything, but I could tell she wasn't sure how to treat me. She ended up sending me to someone who was totally wrong for me, and wrong for my condition. This was a huge letdown and eventually cost me thousands of euros, a lot of discouragement, and time. I really liked this therapist who assessed me ( Mari) but, I wish things had gone differently. I ended up meeting her again at the end of 2017. However, we haven't caught up to this point. 

The Social Worker

This was a pretty useless visit. I had to explain my story for the millionth time. She wrote things down. I never saw her again. I still do not understand what her purpose was, but nothing came from this at all. 

 Vega Talo <------ The Physiatric Clinic that loves to refuse my treatment. 

What's Happening now? 

Sometime in March 2017 my left shoulder completely gave out. I'm not exactly sure what happened but somewhere between the physio assessments, sleep bruxism, walking, and doing the exercises from my then physiotherapist Vilma- it couldn't take it, anymore. I woke up one night with extreme pain and what felt like electric shocks on the left side of my neck. My arm was completely numb and felt incredibly heavy. My wrist felt like it was breaking. I was terrified. The pain in my neck was so severe, not to mention my face. Keep in mind that all of my symptoms occur on the left side. The first step I took was to call the Rehab Unit and let them know that things had gotten worse. I figured since I was still a patient there, they could help me. The funny thing about that is they didn't help me. They wouldn't take my calls. The doctor wouldn't return my messages. Nothing. Infuriating. 

Next step was to contact my local healthcare center. At this time my previous doctor had left (Dr. Silanpaa). This seems to happen often in the local health centers. I had been assigned a random young guy for the previous months, but yet another surprise- he was gone too. I ended up going to an older man that I had never seen before. He told me that he understood that I have a lot of pain, but he doesn't know what to do. He literally told me that he could NOT help me. He suggested that I should see an anesthesiologist. He said he could try to refer me. Nothing came from this visit. 

  Sometimes, I wonder how this happened. Is this because I'm foreign? I'm in Finland? Is it that I'm just unlucky? Is this diagnosis just completely messed up and these people don't know how to help me? This was so draining that I'm really surprised that I haven't had some type of mental breakdown. One of the hardest things to deal with here is that loss of my independence. I heavily depend on my partner to do a lot of things for me because I do not speak Finnish well enough to handle my own business. I don't understand how things work most of the time, and it's just twice as hard when I'm not feeling well.  My partner made a call to the patient's ombudsman. We were then advised to contact the head doctor at my health station which is in Vallila ( Vallilan Terveysasema in Finnish). These things don't happen overnight, so this took some time. In the meantime, I'm still having a lot of pain. I can't leave the couch. My pain is acute. I'm stressed out, and each time my pain feels worse I panic. One night I began having severe pain in my arm, and with the motivation of fear, I ended up going to the emergency room. This was really not a wise decision. The emergency room is for emergencies. For example, if you're in a car accident if you have a stroke/heart attack if you have a life-threatening issue. I know that sounds kind of harsh, but in my experiences- this is its purpose. Anytime I have gone there otherwise, it has been completely useless. So I really try not to go there unless I feel that I am in absolute danger. In this situation, I was afraid. I didn't know if something was seriously wrong if I had a blood clot or some type of serious acute issue. That's THE only reason I went. Even on the way, I knew better. In my head, I always think, " better to be safe, than sorry". The doctor there was so incredibly rude. He couldn't care less about my situation. I was just some annoying person in his ER that was full of other sniffles and issues. He told me I had Tieze Syndrome or that my symptoms were somatic ( which is frankly rude as hell). At this point, my mental health began to suffer so incredibly. I honestly wouldn't wish this situation on my worse enemy. Here I am, in this foreign country, with debilitating medical issues, and I can't seem to find anyone to help me. I don't have a lot of money, I have no power, I have no idea what to do. I have never in my life felt so alone and afraid. With that being said, I have had my partner beside me this entire time, helping me in every way possible. However, even with that, my case didn't really advance. We decided to pay another 150 euros and visit a private orthopedic surgeon. 

My acute pain had not improved at all. I started taking muscle relaxers and pain killers as often as possible. It might also be good to mention that I have a functional stomach issue, so I can't tolerate a lot of medication. I don't know if this stomach issue is EDS related or because my stomach is often compressed by my fascia, which is all related to my shoulder instability. I'll explain later. In this situation, I needed to choose between stomach pain or other severe pain. It's actually a pretty hard decision, but if my pain got too bad- I had to take something. So I did. I visited this new surgeon. He was older and nice. I don't know why I chose him. Mainly because he was a shoulder surgeon, but the issue with going private is you have to pay for the private test (x-ray, MRI, etc). This can become extremely expensive, so most of these doctors will just refer you back to the public sector. Especially in my case. Disability. No money. No power. No testing. 

Here I was at another doctor's office. Explaining this same, panic-inducing story. This doctor told me that I should see an EDS specialist. He actually mentioned Seppo Villanen. This was super frustrating. I had already seen him, and what happened also wasn't useful. He told me that he felt I had some type of serious shoulder issues and TOS. This is the second time I have been told that I have TOS. At least that was mildly comforting. He referred me back to the public side to see a Physiatrist. If you remember from my previous post, this is how I received my EDS diagnosis. From the main clinic in the HUS system called Vega Talo. I left with a prescription for muscle relaxers, and yet another referral. 

The same week, I began having heart palpitations. I know what you are probably thinking...sounds like anxiety. Surprisingly, I'm actually very calm about all of this. My heart has been known to race randomly. Sometimes, up to 150 bpm. This has been explained to me in the past like this: EDS. This is always an annoying response. My heart rate usually returns to normal, and then I'm fine. For some reason, these lasted for hours. I thought this felt odd, so I went to the "day ER" at my local health care center.  I don't mean to spend a lot of time complaining about language problems, but this is a problem. I am in Finland. I should know more Finnish. Honestly, it's not the first thing on my list when I'm scared or feeling sick. I get severe anxiety when going to medical appointments because I don't always know what to do in Finnish or the protocol. I phoned a friend and she joined me on my visit. This was fortunate because no one spoke English when I arrived. My friend explained my situation and I was taken back by a nurse to check my pulse. My heart rate was 150 bpm. I was calm as a cucumber, and the nurse was seriously perplexed. I was sent to the second level, the on-call doctor. She immediately hooked me up to an ECG/EKG machine. She told me that the beat was normal, just fast. She explained that it was some type paroxysmal atrial tachycardia. She said it was benign, and that it should go away. If not I could get a prescription for beta blockers. We also discussed my iron deficiency, and I decided to start taking my supplement again immediately. Within a week,  the palpitations subsided. I have no idea what caused them, but looking back now I think it was something to do with my Thoracic Outlet Syndrome. It's always a mystery with these new symptoms. 

After this, the nice on-call doctor ended up becoming my own primary physician. The calls to the head doctor had assured me that she would be around ( and she still is). I was very happy with that, she has been really great in trying to get me the help that I need.  She always takes my calls, emails me, and goes above and beyond to get me where I need to be. She's young, her English is great, and most importantly she's empathetic. Her name is Dr. Malinen. 

After this heart situation, we ( Dr. Malinen) and I exchanged a few phone calls and I visited her once. My shoulder/neck pain continued. It's always there. Either in an acute situation, or background causing chronic pain. I brought her my referral from the orthopedic surgeon and explained that my physiotherapist also believed that I have TOS. She sent a referral to Vega Talo to take me and reassess my situation. The funny thing about Vega Talo is that they told me to come back if I ever had worsening symptoms.  They refused me, claiming that I was a patient at the Rehabilitation Unit so they could not take me. 

Dr. Malinen and I had a phone consultation a week or so later. She then decided to contact Dr. Yla-Soini and ask her to take me back there. She actually reached her, and she told her that they would not take me there, but would try again to make a referral to Vega Talo.  Keep in mind, I'm still a patient there. I really can't understand this situation. 

The referral from Yla-Soini was denied. No grounds. 

The timeline now is somewhere around May. My acute pain has been controlled by excessive medication and muscle relaxers.  NO ONE from the public side has intervened to help me. I am depressed. This is wrong, and I feel hopeless. My life feels pointless. I am in a lot of pain. I can't eat. I can't sleep. 

I still have my jaw appointments in the background. Also jaw physiotherapy. This can get kind of confusing because I'm being treated for so many different things it seems. Even as I write this, I'm completely overwhelmed telling my story. I can only imagine how hard it is to follow as a reader. If you have made it this far- congrats. This is basically a book.  I brought up these appointments for a reason. I ended up in the hospital accidentally by going to the surgical hospital ( this is the place where I generally visit for all of my jaw appointments that are not surgical).  One morning I took the tram, which seems to be the absolute worst for my pain. I have so much trouble holding myself upright when standing or sitting. Imagine that forced into some tiny seat, perhaps sharing a seat with a stranger. It's really uncomfortable. On this appointment, I noticed that I started feeling dizzy and my heart was racing like mentioned earlier. I wasn't panicked at all and I tried to remain absolutely calm. When I got to the hospital and checked-in,  the nurse immediately noticed I wasn't well. She asked me to come lie down. My heart was racing again and my face was completely white. I told them that I was fine, but they hooked me up to an IV and called the ambulance to take me to the main hospital. I was really annoyed because I knew all roads lead back to nothing. I saw a really nice doctor and told her the short version of my LONG background. She got really angry about my treatment and wrote a very snazzy referral to Vega Talo. Spoiler Alert: It got denied also.  That makes 3. 

 Orton Hospital

If you recall that I was referred to an occupational therapist by the Rehabilitation Unit, this is how I ended up becoming a patient at Orton. I had a referral to see Sanna-Leena, who so kindly, took walks with me, got me a shower chair, disability services at the university, and eventually (from my new doctor's request) a shoulder brace. In the beginning, she mostly made visits to my home because I had serious mobility issues. Leaving the house alone was just not an option at this time. My time with her was semi-useful. She was basically one of the only people I had social interactions with at this time. It was almost like having a friend come over to visit. I know that sounds a bit sad. I ended up liking Orton so much, I decided to book a time to see a doctor there. As you can see, I have had terrible experiences in both public and private care. At this point, I was so desperate to figure out what was wrong. We came up with 200 euros and I went to meet Dr. Kokkonen.

Dr. Kokkonen (Orton) 

In May, I had my first visit to Orton to see Physiatrist Dr. K. Kokkonen.  Upon meeting her I knew she meant business. She was young with a very serious demeanor. Also, extremely kind and articulate. She spent an hour going over my story and every inch of my body. At this point, I'm not even shy about being naked anymore. That's basically the first thing I have to do when I see a new doctor. She discussed my EDS diagnosis, had a look at my shoulder, suggested some new medication (Cymbalta for chronic pain), and gave me a few new diagnoses. Her first plan of action was to get me to specialized physiotherapy from someone who was familiar with EDS, TOS, and TMD. She asked me to quit therapy with Vilma. The second thing was to get my chronic pain under control with medication. The third was to continue cognitive behavioral therapy for chronic pain. I haven't really mentioned my therapy, but along these other appointments, I was being assessed and then seeing someone every other week. Currently, I am not in therapy. There is also a story to this. Maybe I will discuss later on. Dr. K wanted me to try all of these things, and then visit her again in the Autumn. She's super expensive ( SO worth it though) but due to this I ended up only going back in December 2017.  

May 2017 - Current

 Physiotherapy at Orton

I started physiotherapy in May with Karin. She was really amazing as a person. Extremely easy to talk to. She helped relieve my immediate pain. She worked with my jaw, shoulder, neck, and hip. I had issues getting to the hospital. because I don't have my drivers license in Finland, my partner had to take time away from work each week to take me to these appointments.We made it work.  Keep in mind that these appointments weren't cheap. Karin's appointments for specialized therapy were about 80 euros per session. I went once per week for the entire summer. Things weren't really improving for me in the big picture, and she actually decided to take an educational leave. I was really upset about this, but what could I do. She suggested that I try an even more specialized type of physiotherapy called OMT or Orthopedic Manual Therapy. 

Orthopaedic Manual Physical Therapy (OMPT) is any “hands-on” treatment provided by the physical therapist.  Treatment may include moving joints in specific directions and at different speeds to regain movement (joint mobilization and manipulation), muscle stretching, passive movements of the affected body part, or having the patient move the body part against the therapist’s resistance to improve muscle activation and timing.  Specific soft tissue techniques may also be used to improve the mobility and function of tissue and muscles.

Karin left in August. That's when my I met my current therapist, Jyrki.  It's a very funny thing; being with another human who touches you a lot and isn't your friend or significant other.  This turned out to be a great upgrade. Jyrki is a great therapist. Very pragmatic. This appointment started with an assessment, and then we made a plan. He told me that we would try this therapy for 6 months or so, and then if it didn't help he would have to send me back to Dr. Kokkonen who would then decide my fate. This basically meant if I need some type of surgical intervention (shoulder surgery).  He agreed that I have TOS (functional), Shoulder hypermobility or EDS, and problems with my hip. He told me that TOS wasn't really a diagnosis, but a collection of symptoms caused by something else. I often ask him (even now) if he knows exactly what is wrong. He doesn't. However, we keep working on things. I can do a more thorough update on this later. He's still my therapist now, and unfortunately, we haven't made a lot of advancements in my shoulder. Things are looking up for my hip which is good, but I'll come back to this. 

Back to My Health Care Center (June 2017) 

So every time I go to physiotherapy at Orton or to see another specialist... it cost a lot. The only thing that was mostly funded was the occupational therapist.  OMT therapy is around 100 euros per time. I go four times a month. The math is not good. It's expensive. I've already gone through most of my savings to pay for this. Honestly, I wouldn't mind paying for this, if this were the scheme here. I even tried to get private insurance at the very beginning of this in 2013, but I was denied. I have desperately tried to make the public side take responsibility for my care, over and over.  I won't ever stop trying to get the treatment I deserve, and if you are in a similar situation I advise you to do the same. The system is funny here, for my jaw, it has been amazing. That is probably because it's operated through the University System ( and is extremely specialized). It might even be funded through the city. I won't' pretend to know the intricacies of how this system works. I can barely comprehend how my care is 5 star in one spot and barely 1 star at another.  The purpose of this visit was to try and get the help that I should be entitled to as a resident. I'm entitled to cost-effective care that will help me actually figure out what is wrong with me and how to manage that. This has only been a fantasy. 

Dr. Malinen has tried various avenues to get me to that care. I knew that I had a small jaw surgery approaching in August, so I wanted her to help me as much as she could before the "HOLIDAY" month of July approached. During this time basically, nothing happens in Finland. My physiotherapy with Karin had been going pretty well. My pain was somewhat reduced for a few days at a time, but would swiftly return if I walked too much, used my arm, or basically did normal everyday tasks.  Looking back now, I see that 2017 was the year of major disability and going in circles. I stopped doing most of the things I loved, it was the last time I've seen a gym ( in January), and my overall mood has suffered so much. I don't know what else to say about it. 

On my next visit, I brought Dr. Malinen my statement from Dr. Kokkonen to try and get an appointment by the physiatrist at Vega Talo. I figured if another very qualified specialized doctor referred me to see a physiatrist and diagnosed me with TOS I would be able to finally get help on the public side. Just as always, Dr. Malinen thought this idea was plausible and sent the referral. 

Surprise. Vega Talo denied it again. This is the 4th time. 

On the bright side, Dr. Malinen was able to get me an appointment at the Pain Clinic, and at that time. this satisfied me. Originally, Dr. Yla-Soini offered me this option and I declined because she said they would only try to give me medication. I was getting desperate again, so I revisited that option. This also ended up being an utter disappointment. I don't even know if it's worth describing. I met two general doctors who were doing a "pain" rotation. Obviously not very qualified to make decisions about my care. I ended up on Cymbalta for a week, but it made my vision go completely blurry, so I was taken off of it. They had no other solutions for me. Their best suggestion was to stay at Orton. To keep throwing 400 euros per month at the problem. Which I have continued to do, despite the fact that I can't afford that. This was a bitter disappointment, but I can say that I have exhausted all avenues. I should write about the separate experiences but in the end its' all the same. Nothing changed. I actually ended up going after my second jaw related surgery, and I'll explain those briefly. 

August 2017  
The Second (Minor) Jaw Surgery 

The second surgery was really no big deal. I had it in August 2017. I had my usual surgeons Dr. Stoor and Dr. Saloniemi. Things went fine. I was in the hospital for a day and a half. The healing was okay, besides bruxism. I had to visit Dr. Saloniemi once afterward to get medication to control my bruxism (Diazepam).  This drug actually worked really well for a while. The problem with this is that eventually your body gets used to it. Then you have to take more and more of the same effect. I have to be careful using this because after successful use for about 6 months, it's not working very well. I only take it as needed and I refuse to take more (or more often)  than I am taking now. 

December 2017 
The Third Jaw Surgery 

This wasn't exactly a huge surgery. Just opening up my implants from the previous surgery. It was only supposed to take about 15 minutes and ended up lasting an hour.  The surgeon was someone I've never met before, and she has me hold my mouth open for most of that hour. You cannot have a TMD patient hold their mouth open that long.  I had this just before Christmas and I haven't fully recovered from the extreme bruxism that came afterward. I'm not done with all of the jaw stuff until March or April.  My bite needs to be raised and I have to finish with this implant situation. I am really looking forward to being done with this. 

Current Situation ↣

I'm currently still in OMT physiotherapy at Orton with Jyrki. I saw Dr. Kokkonen in December for our update. She thinks physiotherapy isn't working and referred me to an orthopedic surgeon on the public side. I still haven't received any (public side) assistance with my physiotherapy as promised. Dr. Malinen is currently working with the Rehabilitation Unit to try and find a solution. It's been back and forth for about a month now. 

During my visit with Dr. Kokkonen, she did an ultrasound of my shoulder and found some irregularities with the tendons. The supraspinatus is weak compared to the right side. Scapulohumeral rhythm is reduced. The trapezius is extremely weak. There is mild lateral winging of my scapula on the left. There's very clear muscle atrophy in the teres (major and minor) area. She also believes that there is supraspinatus tendon is thinning and irritated. The muscles that are innervated by c7 are noticeably weaker on the left when compared to the right. There is marked trapezius and SCM tension on the left. CRLF on the left is positive, and lastly, there are clinical signs of TOS.  The doctor believes that my shoulder instability is causing this problem, and wants this to be further evaluated by a surgeon. She has asked for more testing. More specifically she wants an MRI with contrast on my left shoulder. This referral was sent the orthopedic polyclinic in Helsinki. It was promptly dismissed and sent to Vega Talo. Fortunately, I have moved into the Vanta city limits, so the referral was transferred to Peijas Hospital. I'm still waiting for the next appointment on January 26th, so that I can finally get closer to surgery to help correct this issue. I really hope I don't get blown off again. I'm at the end of the road with this, and I don't see many more options. Yet again, I have to go and tell my long back story to some new doctor. Fingers crossed that 2018 is the year of solutions. 

Most recent ICD-10 Diagnostic Codes
Sorry these are in Finnish, but the codes can be googled in English 

Shoulder Instability and Joint Laxity  This is a great article to read to further understand the situation with my shoulder. It's pretty long, but I thought I'd add it for further reference. 

This is basically a book about what has happened since my first jaw surgery. It's a lot to read, and I want to thank anyone who has taken the time to read all of this. This isn't the end of my story (or even the end of what happened in 2017). If you have any questions or comments please feel free to reach out! 

Thanks again for reading! 

Always, 

Amie