CSM New to site

Sorry you are having problems, most Gp's are against surgery unless condition is really servere due to the risk's involved. You do have the right to ask for a referral to a neuroligist who is better placed to decide what treatment would benifit you and if surgery is an option they will refer you to a neurosurgeon. In my case because of the myelopathy it was the only course of action for me to take. I should add that you should only think of surgery as a last resort and take your time to consider all options.

Regards Tony

Reading your posts with interest. I am soon to have dreaded consultation with surgeon. Just wondering, I don't know how long it's been since your consultation but, not having had the op, have you noticed any worsening symptoms or does your condition seem fairly stable. I know you were advised not to have it by your neuro. I might be facing an option and it's good to see both sides of coin beforehand.

Gerry

Gerry

Got appointment letter today for op, it will be on 15th June. Hopefully will be able to give you good news afterwards. Tony

Just had call from hospital, op tomorrow cancelled because of an emergency. It will now be this Friday 18th, so got geared up for it and now need to calm down and start again. Hopefully it won't get cancelled again.

Regards Tony

Hospital just confirmed my bed for tomorrow [scarey]. Feeling very nerveous now but know it needs to be done.

Take care and I will post when I get home and let you know how it went.

Tony

Good luck for tomorrow and take it easy. Bound to be nervous but will soon be over and you will be back home again recovering.

Take care and don't worry too much or your blood pressure will go up.

Say hello when back home

Regards Lyn

I saw the Neurology Registrar on April 30th. He said that surgery in not advisable for my CS but said I could see a neuro surgeon for a second opinion in case there is one who is prepared to take the risk. Surgery for my cervical artery compression has been ruled life threatening so it will not happen. I may see the neuro surgeon just to get answers to questions, I do not want to risk having surgery until I am totally knackered.

Yes my condition is worsening week by week. The base of my head and top of my neck feel as though they are being gripped in a vice. a lot more sharp pains in my neck when I move my head. Sharp pains in my right upper arm and shoulder now constant. Sharp pains in feet becoming more frequent. Strange dizzy spells even when sitting still. Generally feeling more worn out and tired, I feel I could sleep 24 hours a day.

Janner

I got back home from hospital last night so far so good. Surgeon did ADR instead of fusion, I noticed differance straight after, walking is so much better. Still have pain in neck and shoulders but thats to be expected until it all settles down. Unfortunately he knocked a nerve that caused me extreame pain in my left arm but that has settled down a bit today. Also they changed my medication, now on tramadol, amitriptyline and diazepam. Hope you are all ok regards Tony

Welcome home. Sounds good, despite the knocked nerve. Just wondering what ADR is....save me looking up a lot of technical stuff. Also, it seems your op was for myleopathy, to help with walking etc.. Again, just wondering which vertebrae they worked on for this. My problem is at C7, but only the hand is affected. Hoping your recovery goes well and, as a friend of mine used to say...\"take it easy....but take it \".

Gerry

ADR is artificial disc replacement, reasonable new procedure in this country. In simple terms they remove the bad disc completely and replace it with an artificial one, it can be done with any disc in my case it was C5/C6.

Regards Tony

By the way, I was a bit laid up last week with the usual stuff, result of lifting a bag of sand which was just too heavy, so I used the time to put together a little booklet of advice for self managing C/S ( 8 pages ). I'll stick it up on the Ruminations page once I've proofed it, maybe in a couple of weeks. If nothing else, it should help balance up some of my crazy stuff that tends to pour forth. When it's up, I'd appreciate any feedback from yourself, and others, whilst it's still available for editing. I've always felt there was a critical lack of info available , both for newcomers to C/S and long timers, for dealing with day to day associated problems, so I've tried to address this. Some constructive criticism wouldn't hurt for refinement purposes and there may be some glaring omissions which would be more obvious to others and which can be later included.

I'll probably stick a couple of pages up in the next few days just to give an idea of whats coming.

Regards

Gerry

Looking forward to reading your 'booklet' but just hoping that there will not be a reference to the dreaded wear and tear? There are literally hundreds of internet sites related to CS but they all state that this 'condition' is normal wear and tear that most people will suffer from and is age related. They also state that it is 'unusual' for CS to cause any problems except in rare cases?

I was diagnosed, after many years of related symptoms, in my 40s and the age related comments really stick in my throat along with the bloody wear and tear remarks.

However, it will be interesting to read how others mange their condition and relate it to our own day to day struggle.

Hope you don't mind my ramblings!

Looking forward to the first edition.

Take care

Lyn

I totally agree. As far as I'm aware my C/S has been deteriorating since a car crash when I was 8 years old. First diagnosed at 30. I've tried to keep the advice general without any reference to age, although I do mention wear and tear. It's probably not surprising that most professional attention refers to the elderly, simply because, to them, that's where they encounter the greatest number of cases. But that shouldn't exclude those of us who have had to deal with it over many decades. I also think that only thinking of the C/S dilemma as age related has become a convenient excuse for not applying themselves properly to devising therapies for C/S sufferers who must negotiate their way throughout a normal lifespan, and thus the booklet. Hopefully. it includes the sort of advice that I would have loved to have heard 30 years ago. I didn't then, and I still don't hear it now. Again, thus the booklet ! It may just be me but, besides comparing the varying strenghts of various cocktails of supposedly suitable medications, there just doesn't seem to be a lot of relevant practical advice out there.

The idea for the booklet kicked in after I asked my neurosurgeon for advice on self managing. That was the time for them to hand me a booklet and, as it wasn't forthcoming, I thought I'm going to do this myself. Always nice to set a good example !

I've tried to keep the advice fairly general and hopefully it won't upset anyone with a different overview of their condition. Always difficult with C/s. A bit of feedback might help with tweeking anything of this nature. I'll try and plant a couple of pages on the ruminations page as starters.

Enjoy

Gerry

I totally agree with you that many Doctors use age related wear and tear as an excuse as they know little about this condition or how to treat us sufferers who are not in the 'elderly' bracket.

I feel like one of the lucky ones who has a wonderful GP who is sympathetic and talks through many of the issues with me. He never complains when I'm back and forth with different symptoms as they flare up and tries to treat each thing as a separate entity. Many sufferers are met with indifference and reading the other sites, many seem to be generally ignored or frowned on for complaining.

If I knew how, I would add my own web site with the reality of CS to the hundreds of others which seem to play it down and call it a 'common condition' with problems arising as very rare and then hardly touching on these 'problems'! New CS sufferers can become very despondent when reading these and I know I felt as though I was different or complaining when I first read some of them!

Will you eventually create a site with your self management and do you know how to set one up? You could send the Medical Profession running for the hills by forcing them to face up to reality! You may even change the face of the the DWP? Now that would be something!

However, in the mean time, thank you for your thoughts on helping out the CS sufferers who struggle to manage their condition through little or no guidance from the Medical Profession!

Looking forward to reading your advice

Take care

Lyn