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