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
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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