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.
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| Directly after I woke up from surgery |
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| The many faces of my surgery |
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| 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.
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.
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.
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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
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!
