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“Lineage”, As I was reading your letter and then Jennifer’s response, I was wondering if any pain intervention doctor OR neurosurgeon had suggested that you try selective nerve root blocks at the levels of compression in your cervical spine? That can be done by one of those specialties or maybe even an interventional radiologist. They may only do one level at a time so they can find out what works/doesn’t work instead of doing multiple levels at once - the latter muddles the picture. More travel and pokes for you, but it is important to clarify the situation. I had both my neck and back done when I was being diagnosed. I’ve had both neck and back fusions and was a RN x 43 years, so speaking from multiple aspects of viewpoint!
Another thought is you could get an opinion on whether one of MD types I mentioned would consider trying this on you - at this point - by looking at your scans and chart online. Then maybe if you traveled to get one, you would know ahead of time why you were going back instead of feeling like wandering in circles. It is VERY frustrating to not get clear answers. As was said, you really have to be your own advocate these days! Not fun when you are already under the weather, but an evil necessity from my patient perspective!
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Most of the neurosurgeon and Neurologist are at a loss as to what should or could be done next. It feels like they gave up before they started.
The doctor who has stuck with me the most has been my pain management doctor. He has tried to guid me as much as he can. He even gave me a steroid injection for my genitofemoral nerves to try to help with some of the pain. It did help with the inguinal areas and mons pubis areas but did nothing for the penis and foot.
I think all of the doctors Ive seen are out of their depth with my symptoms. I dont know if its due to the rarity, complexity or some other reason but theyve all run out of ideas. Every single one has stated theyve never seen symptoms like mine and I am not presenting normally by any means.
I really hope I dont have something so rare it cluld be named after me heh... kidding aside I need to keep looking for someone who will actually care about resolving this... so far Ive had no luck.
From what I understand a nerve root block would only help if I had symptoms in my neck or arms. This type of compression is inside of the spine so it would need to be an injection inside the spinal canal. Im still nkt 100% convinced my cervical compression is causing all this and injections inside the canal can be very risky. I could be wrong though... I just wish I could find a doctor who could confidently guide me.