cervical spondylitic myelopathy

[michele beesley]

Hi I am a 51 year old mum with a long history of back trouble. I had a laminectomy at 21 followed by a 3 level lumbar fusion 15 years ago. For the last 10 years I have been having cervical facet injections. I recently had a new MRI which I had to push for because I have had so many problems with my arms & shoulders and I felt these were coming from my neck. I now find I have multi level disc protrusions facet degeneration and foramen obstruction.
I have been told I now have myelopathy which certainly explains my clumsy gait pressure in the head and behind my eye with pins and needles in my face I have motor loss in my r arm. My Uk doctors are not keen on fusion or adr and have almost 'put me out to pasture' saying my spine may fuse independantly prioir to permanent damage! They say the main prob is at C4/5 but there is no pressure on the cord (although it can be seen both on film and via symptoms!) This is not the view of 2 Dr's I have consulted in Germany who have seen my MRI however their opinoins differ! One tells me I need ADR at level C5/6 6/7 and a clean up at 3/4 4/5 the other says I need a neuclectomy at C3/4 to relieve pressure on the cord and then watch and wait for whether to go for more! However both insist this must be done asap to prevent further damage.
I am now completely confused as to how to proceed and would apprecaiate any advice particularly from others with cervical problems who have had surgery

[dshobbies]

Michele,

Getting conflicting advice from doctors is more than confusing, especially when you're dealing with pain everyday. I'm sorry for your suffering and we all understand that you want a direct road to a fix and recovery.

I see you're in the UK. Do you have the financial ability to travel to Germany? Dr.s Zeegers and Bertagnoli are the foremost ADR surgeons and Dr. Baumbach, from what I've read, is the absolute best diagnostician.

You should get in touch with Mark (www.globalpatientnetwork.com) who can put you in touch with these doctors as well as help you unwind this very crooked road.

Good luck, Dale

[fortitudine]

Hi Michele,
Sorry to hear what a tough time you are having. I'm surprised your UK docs can't see any pressure on the cord, as your symptoms are classic.

I was dx'ed 3 years ago with cord compression at c3/4/5. Had gait problems, mild l'Hermittes (shocks) and hyperreflexia. Also had cord edema, which it seemed was the chief problem. Symptoms resolved within a few months.

My doc here in Canada wanted to fuse 3 levels starting at c2 (because it would probably go eventually). US doc wanted to do a 2-level fusion/discectomy. That started me looking overseas. Ended up with Mark and Bertagnoli, booked, postponed and resched surgery several times due to circumstances beyond my control. But as I had no symptoms, I got permission from Dr. B's partner to "watchfully wait".
I get a new MRI every 6 months or so.

I've been on cycling trips, even fell backwards and hit my head on ice.

Just got an MRI last week, no evidence of myelopathy; however, and this is rather new, severe foraminal stenosis left c3/4 and right c4/5 plus grade 1 spondyolisthesis due to severe facet arthropathy at c7/t1. Will have to consult the gurus to see what's next.

I don't know what to suggest to you, but if your symptoms are persistent you might want to follow up with the European docs. Check out their references, ask more questions. Perhaps the doc who only wants to do one level right now has more experience and knows it is safe to wait or perhaps it's the other doc! Mark can probably help you there. He's been super for me, and I haven't even been under the knife yet. Good luck.

[LC in UK]

Hi Michele
I'm in my 50's with history of lumbar spine problems and surgery since 1982.
Cervical problems were diagnosed with me a long time ago (osteophytes, neck arm and shoulder pains and numbness) but nobody seemed concerned about that end of my spine!
Recently, as you can see from my postings, I'm also having gait problems, weak and wobbly legs, and will be having spinal probe in 2 weeks for lumbar problems but so far nobody seems concerned about the upper spine even though my GP has recently drawn their attention to it.
As with you, getting an MRI is difficult.
But get this.....my local hospital arranged an emergency lumbar MRI and forwarded the images on CD to the Hastings hospital but when I had my appointment there on June 26th they'd LOST it!!!
Your experience of pressure in your head interests me. I've had this sensation for a long time. Worst time is waking, I feel like I've got a hangover without the headache and feel "punchdrunk. I get this feeling of tightness and constriction around my head and it's a horribly unsettling symptom.
Is this what you get?
I sympathise with your dilemma about which diagnosis to go with but I suspect as much as your symptoms are problematic it may be in this country that they take the wait and see approach?
But nobody's even said as much to me, just ignored it, making me feel I've got another "psychosomatic problem" !
Wishing you all the best anyhow, sounds like you've had good advice from the doctor in Germany to take the slowly slowly approach.
Lynette

[mmglobal]

Michele, I'm so sorry that you have been unable to get to a solution. I've seen too many cases in which people who were told that they don't have a chance... actually get a surgery that is very effective. (I don't want to make you think that it's always true... but for the most part, I've seen good success from the surgeons who really take their time with the diagnosis and proceed carefully.) Read about Lorna (on iSpine)... her transformation was amazing. Also look at JackH in the patient stories on the GPN site (linked in my signature file.)

Lynette, Hope and Michelle... Someday, I hope to hear great news from all of you.

All the best,

Mark

[nopain]

You are 51 it's not likely that you will get better without some kind of intervention (noting that you have been getting shots for 10 years). Those shots can in fact over time make your problem worse as they damage the surrounding tissues.

I am currently using "inversion therapy" - I hand upside down a couple of times a day. I do this in lieu of traction as traction only stretches part of the spine. Inversion does not require you to be completely upside down. The table allows you to incline at any degree you feel comfortable with.

Hydrotherapy will help relieve symptoms as well and so few people actually do this. Unfortunately what I read of UK Medicine is the system is very burdened.

If I was as close to Germany as you are I would be figuring out a way to make that trip.

This site exists for a reasons. Unfortunately most the cases here (Myself included) are very old, very difficult and don't have the most promising of solutions.

PS: I'm big on the German Enzyme product Wobenzym as it is one of the few non drug therapies that seem to help me make it through each day.