Hi everyone, it is so good to find that this website still exists as I last posted on here about 11 years ago and although I do visit this site from time to time.
I had two surgeries to my neck in 1998 and I unfortunately have never ever returned to my pre op condition. So fairly concisely I will try to tell my story.
In 1995 at the age of 35 I was diagnosed with osteoarthritis in my spine I was told that my condition was that of a 65 year old woman (who appeared to have had the life of a coal miner or an all in WWE wrestler :-))the truth is my G.P. at the time commented I may have had some type of juvenile arthritis? He said this may have been the reason that I had always suffered neck pain as a youngster but that it had never been diagnosed?
Then within a few years of this I had a car accident and was told that every disc in my neck had herniated to varying degrees as well as some in my lower spine (which did settle thankfully)
When the condition deteriorated I was told that I had a severe herniation at c5/6 which had cut into my spinal cord and I began to loose sensation down my right side. In August 1998 I had surgery and was told that though c4/5 looked pretty dicey because of my condition at the time they decided to leave that one and keep an eye on it. However within 6 months they then found this had been a mistake and I had to undergo further surgery on this area and a bone graft from my hip was placed in there to further help. Unfortunately my body absorbed this bone graft leaving the area "mobile" and I have never been without pain since and though I did try to return to work after a couple of years it became impossible and I have been disabled since early 2000. I then collapsed in 2005 after months of very poor sleep and losing sensation once again in my right hand side from my eyes, cheek, tongue, mouth and down to my legs, my Neuro surgeon considered fusing all my cervical spine but he was loathe to operate with the state of my arthritis he did not think the bones would support the metal and screws and commented it may make my condition worse. He did though send me to the best pain specialist I have ever seen and he diagnosed that as well as everything else I had CRPS along my right arm which is Chronic Pain Reflex Syndrome and all my meds were reviewed (for the first time in few years) and I was prescribed 25mg morphine patches every 72hours, Tramadol, Lyrica and some other meds which thankfully this time my body tolerated and I was at last able to get some sleep. Since that time I have been up and down with the pain and my morphine patches have gradually been increased over the years up to 200mg every 72hours together with liquid Oromorph and Diazepam for when I get the spasms and the pain it at its very worst. I do fall often and have had to go to A&E many times and then two years ago I started to go downhill again and the pain across my shoulders going into my chest began to affect the left side almost as much as the right at one point I thought I was having a heart attack but I was told c3/4 affects the chest nerves, my G.P. reffered me back to the specialist again and after having another MRI's the Neuro surgeon has found that though c 5/6 and c 4/5 have clamped together forming a big chunk of bone that is helping my neck(and head) stay secure, at c3/4 the herniation has slipped out some more and c 6/7 is really out there, oddly enough there is a lump of something behind the missing disc of c5/6 he said he thought was a screw from my previous op but, I only realised after we left that I haven't had anything "screwed" in that area so to speak :-) so I am puzzled about that little lump of something? He has suggested removing both the herniated discs and clamping the lot together from the top to the bottom but I am really nervous about this, I mentioned I didn’t want to lose all sensation in my legs as I explained when the electric shock pains shoot down into my legs and I literally stagger it is so scary and I am pretty terrified of not being able to move at all but he and my son did comment that if in the last two years I have deteriorated so much what might happen in the next two years which I suppose does make sense. 3 weeks ago he arranged for another MRI as it was a few months since my last one and this is due in a fortnight so that’s pretty fast. He knows that I am so loathe to have another op he has promised that if everything looks the same as last time we can afford to wait for a few months until we make the decision. Anyway after my "war and peace" saga I am interested to know if anyone else has been in the same or a similar situation as me and if you opted to have surgery and if it was successful? Thanks so much for taking the time to read this I really appreciate it.
Linzi (in the uk)