Sunday, March 16, 2014

Results From Pennsylvania

Well, we made it home safe and sound from Pennsylvania. The weather behaved and we didn’t run into any troubles which is a very good thing. Normally we have a couple hours to site see but not this time. It was strictly medical. We spent 6 hours at the doctors’ office on Thursday; an hour and half waiting, two hours with the physician’s assistant, and three hours with the doctor himself. The next day we spent two hours with the therapist. It was a relief not being rushed; especially since my history is complex. The visit with the doctor from a diagnosis perspective was very successful. It is such a relief to finally have answers; especially when I’ve been saying for 18 months something is not right and I can pinpoint the day the problem occurred. Hopefully from here on out we will be able to figure out a game plan for treatment now that we have a HUGE piece to the puzzle.

The ultrasound was not as painful like I feared it would be. The doctor was extremely gentle with me and I ended up with just a standard ultrasound because I don’t have enough motion to do the movement one. The doctor told me even if I did have the dynamic ultrasound done, it wouldn’t make a difference because the problem could be seen with slight motion at my side. The ultrasound revealed I have a lot of inflammation around my brachial plexus (bundle of nerves that send signals from the spine to the shoulder, elbow, & hand) and my brachial plexus is all scarred down. It is also getting completely compressed between my scalene muscles (muscles on the side of the neck). When I go to move, it shows there is no space at all for the nerves to move. I don't remember the exact location, but the doctor said the nerve was "popping out" because there is no space. It appears the bodies natural response is to go into overdrive and heal itself when trauma occurs is not necessarily a good thing. The scar tissue that has formed is preventing my nerves from being able to move. They are stuck. I’m waiting for the official report but I’m pretty sure he said I have thoracic outlet syndrome and brachial plexopathy. When you add these nerve problems to the scapular dysfunction, instability and chondrolysis in my right shoulder, you get one very messed up shoulder joint.

As far as treatment goes, that one I’m not sure of yet. I emailed my doctor in Colorado and I am waiting for a response. The doctor I saw the other day uses alternative modalities of treatment and I don’t understand how that’s supposed to get rid of the scar tissue that is clamping my nerves down and get me better.

In the meantime, there are a few things that I can do to help my symptoms. One is to wear my brace whenever I’m standing and prop with pillows whenever I’m sitting. This will help reduce the stress on my nerves, shoulder and neck because the weight of my arm will be supported. I was given a device called a high voltage unit which has been programmed with 3 different settings. One of these settings is to help increase circulation and reduce inflammation, another for muscle spasms, and the last one is to help with pain. I think this will be beneficial.

This diagnosis explains so many of my symptoms. Nerve compression is not a good thing to have. It explains the sharp pain into the back of head, why my neck has been hurting, why I can’t lay on my stomach, why I can’t turn my head without discomfort. It even explains why it hurts to walk. Holding that upright position that you have to do when you walk is compressing my nerves. It explains why it hurts to write/type/draw after a very short amount of time, it explains the burning/sharp pain over my shoulder and up the side of my neck into my jaw, ear, & side of face, it explains why my shoulder freaks out when it is moved past its “safe range”, it explains why my shoulder starts to shift forward and the muscles spasm like crazy, it is also a contributing factor explaining why my motion is so limited. The reason my motion increases with my neck bent is because there is space for my nerves to move.

Thank you so much for the positive, happy comments that I’ve received. They are very uplifting; especially on a very stressful week like this one. They do more than you realize. I can’t begin to say how relieved I am to finally know what has been interfering with my ability to get better over this past year. For the first time in a long time, I’m a little optimistic that I will be able to gain more motion and gain a little more independence once we figure out the best course of treatment for me.

There's 9 days left to order your Hypermobility/Ehlers-Danlos Syndrome Awareness Shirts. May is HMS/EDS awareness month. A portion of the proceeds will be donated to the EDS National Foundation. HMS/EDS Relief Fund for Megan

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