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!