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jennybyc
12-01-2011, 08:23 PM
A good friend who had a hemangioma in her cord told me about this place as THE PLACE to find answers about my cord problems. I hope you can help.

Five years ago, after going numb while shoveling snow, an MRI showed I had multiple levels of moderate cord compression down to 5-6mms and severe neuroforaminal compression bi-laterally from C3 to C7. My only symptoms were very stiff legs that made it hard to walk and I kept dropping things. No pain. I was diagnosed with cervical spondylomyelopathy.

I decided to have a C3 to C6 laminoplasty with C7 decompression done in Boston by a really top notch neurosurgeon. The surgery was great and I was able to return to work part-time only 2 1/2 weeks after surgery, walking just fine and dropping nothing. But then 6 weeks post-op, my gallbladder stopped functioning and I had to have surgery again to have it removed. It seemed after that surgery, my neck started to have trouble. Twelve weeks post-op, I was sitting in a recliner watching TV after dinner when it felt like someone had stabbed me in the neck, over and over.

Once I finally saw my doc, it was discovered I has subluxated all 5 cervical vertebrae, breaking the bone grafts at C5 and 6 and the left sided lamina at C6. I lost most of the use of my left side and a lot of weakness on the right as well. Surgery was immediate. I was fused from the back from C3 to T1. C6 was so damaged that he couldn't even get screws into it so it was sandwiched in place and the entire neck held by 2 titanium rods and 10 screws and OP-1 bone putty.

Although my doc thought I would not get my left arm back, I have regained about 95% of movement, 75% of my strength on the right and about 50% on the left. It's enough to hold my 4 month old grandson so I'm okay with that. I still do PT to stay strong. Went on SSDI.

However, it appears I am developing cord compression symptoms again. I have bi-lateral leg numbness but can walk slowly. I don't feel anything falling on my toes(like a 10 pound bag of sugar) or bug bites on my legs and even my chronically aching knees aren't hurting very much any more. Just recently, I've developed some problems with bowel incontinence.

An MRI done on my lumbar spine shows no cord compression and an MRI of my cervical spine shows only mild cord compression from a disk that has entered the canal at C4-5, and minimal cord compression at C5-6 and C6-7.

Here is my question. I had moderate cord compression when I had the first surgery and from what I understand, had moderate to severe cord compression prior to the 2nd one(no MRI done, only a CT prior to surgery). Since my cord has sustained damage twice before, could this minimal and mild compression be causing my current problems? I haven't heard from my neurosurgeon(just sent the MRI) so I don't know what he thinks but wanted to know so I could ask the needed questions...like...do I need more surgery and how soon.

I hope you can help me. Working with a doc who is 120 miles away as well as a local physiatirst who never returns phone calls has been exasperating to say the least. I reported the bowel incontinece to the physiatirst some 3 weeks ago and not a peep from her so I included it in writing when I sent the MRI to the neurosurgeon. She thinks it is my lumbar and he thinks it is my neck. HELP!

Jenny

SCI-Nurse
12-02-2011, 08:45 AM
If after surgery you got better then it either has reoccured or worsened or something is giving you these new symptoms or worsening of the symptoms.But you must have it investigated and if there is a way to relieve whatever is there then it should be done ASAP because if pressure on the cord for too long it can be irreversible. And is htere swelling or anything that steroids or NSAIDS would help?
You must have a very degenerative spine and you need to be very careful-not pick up anything heavier than 5 -10 lbs and no twisting or anything that could possibly injure your neck. You can hold your grandson but don't pick him uphave someone hand him to you.
CWO

jennybyc
12-02-2011, 10:01 AM
I have both severe OA that I've had since early childhood due to severe abuse and developed RA 7 years ago that is very aggressive. I've had so many steroid injections that I have become allergic to steroids and most NSAIDs. I am currently on a combination of methotrexate and Orencia(a biologic drug).

But the abuse in early childhood is the major problem. I had so many small tears to the ligaments of my lumbar spine that at age 25, I tore the anterior longitudinal ligament from the sacral area to lower part of my thoracic spine, injuring it all the way up to T6 by merely standing up from the floor. My neurosurgeon believes I sustained similar injuries to my neck and that contributed to my laminoplasty grafts breaking as I had a substantial dislocation of C4 and 5(they are still 5.5mms back from the the other vertebrae). After at least one episode, I remember not being able to stand up or walk for many hours so my spine did take a lot of abuse. There is evidence that I might have sustained a fracture to my thoracic spine during this time as well as half of T7 is missing.

I have alerted both my local physiatrist and my neurosurgeon about the bowel issues as well as my primary care doc and rheumatologist but no one seems to feel any urgency in figuring out what is wrong.

I think part of the problem is my lack of pain so I'm not screaming at them to help me. But I don't like "numb". And having been abused, I don't advocate for myself very well if at all. At age 60, I still cower.

You have confirmed for me that any compression may be causing the problems I am having so I will continue to call and see if I can get anyone's attention on this. I just feel VERY alone and neglected.

gentle hugs.............Jenny

SCI-Nurse
12-03-2011, 08:57 AM
You definitely need to have it looked in to. Get an appointment.Unfortunately with your OA/Ra may not be anything surgical they can or need to do.
CWO