My appointment

Teri66

Had my appointment to see the neurosurgeon today, I came out feeling as though I’d been rushed through, I forgot my list of questions I had and he was just firing medical jargon at me, he said these things could stabilise and sent me away to think about if I wanted to go ahead with an operation on my neck.

A little idea of what is being dealt with from one of my letters: “Her MRI scan has shown mild reversal of the normal lordotic curve with the disc bulge extending from C4/5 level with prominent disc osteophytic bar at C6/7 level leading to thecal indentation with bare minimum CSF flow around the spinal cord”

Has anyone had surgery on their neck? I’d appreciate any pros and cons to having surgery, he went through the list of risks involved but said very little about benefits of having surgery, I know it’s not a cure but to prevent things worsening but then he said things could stabilise?

I’d appreciate any advice, I just don’t know what to think at the moment.

Teri.

Airwave!

Return to your gp and get him to interpret, he's there to help you, a calll should rest your mind.

stickywicket

I'm with Airwave. Medic is a foreign language which we are not qualified to translate. GPs are good at it though.

It sounds as if the surgeon isn't too keen to operate if he emphasised the drawbacks more than the pluses.

Teri66

Thank you for your replies, I’ve booked an appointment to go and discuss things with my GP.
The neurosurgeon said he was happy for myself to be referred to him but he’d also thrown in the comment about “sometimes things stabilise” without any guarantee of that and how fast my current symptoms have appeared (Of late I’m experiencing some loss of feeling in my legs) I’m scared of making the wrong choice. I will talk things through with my GP and hopefully he can shed some light on things for me.

Teri.

stickywicket

The unfortunate thing is that there are no guarantees. He can't tell you because no-one can know. I can understand you fears of how quickly this could progress but I write as a total layperson with no medical knowledge and no experience of neurological pain. See your doc and then, if you feel like it, get back to us, please.

stellabean

Hi terri, I was assaulted in 1999, I was found to have 3 damaged discs but what shocked me most was being told I had spinal degeneration ( the spine of a 80yr old, I was 40 ).He was surprised |I was still walking but would not contemplate surgery due to the amount of damage. I was told that sometime there is inflammation and with time this can settle down and things improve on their own. His only other advice was use a wheelchair if the pain was bad, and to be careful when sneezing,coughing and if possible don't fall on to my hands.
I have OA and RD but am still walking though at times slowly, I have stopped living my life afraid of sneezing, falls are a part of life and at times unavoidable. I know neuropain is terrible and there sometimes seems no way of controlling it. I have altered sensation in the skin of my but and legs so I feel as if I am burned or being eaten by insects all the time it drives me mad.
Some of the neck pain and nerve stimulus in my arms has settled over the years but does flare and I see a Physio for this.
You need to fully understand your results and seeing the scans and having them explained to you will be helpful I hope your GP can do this because you can't make a decision until you understand things clearly.Let us know how you get on .Sue

Teri66

Hi Sue
Thank you for your reply, I was initially diagnosed with ‘mild’ arthritis in my hips in June of last year and since then I’ve been experiencing one symptom after another, nerve pain (was mostly down my left side, but not so now) pins and needles, feelings as though something is crawling under my skin, fasciculations, loss of sensation in my legs (this is a more recent symptom) the nerve pain had me signed off work for 5 weeks and you’re right about not being able to control it, my GP prescribed one form of pain relief after another and nothing helped, it was horrendous.
I’m hoping my GP can help, although the neurosurgeon showed me both the MRI scan & CT scan and explained about the degeneration and about my spinal cord (that showed damage to it, shows as white/grey patches on the MRI) he just left me feeling very confused when he said things can stabilise, what if they don’t? Considering until last June I rarely ever saw a doctor and now I’m facing, for me, a very important decision to make.
I’ve got the appointment next Friday 1st March, hopefully things will be made much clearer to me.

Teri.

stellabean

Hi Terri, I am lucky in a way not to have been in your position of having to decide about surgery or no surgery although at the time I was MAD as hell at being told to go and get on with things as there was no way he would ever operate on 3 damaged discs in my neck. In fact once my employer's insurance company had paid him for his report he wanted no more to do with me.
I was a very active nurse caring for my daughter working full time ,looking after my 2 horses (1 rescued ) 4 other horses, and my dogs and cats ( my hubby worked away from home at the time).
I used to walk 5 miles a day ride and train my horses and do loads of craft things and helping friends build a stone barn without any sign of the damage that was going on in my neck and spine. That neurosurgeon wrote in his report I would have been as bad as I was in 2 years even if I hadn't been assaulted.

I have been to pain management but found the meds didn't agree with me I had some terrible side effects. I did have a spinal injection into lower part of my spine for bad pain but it made things worse for over a year I attended a private physio and after a year thing improved the pain is back to it's pre-injection level and I am happy with that because I will not be able to stand that pain again. It's abit like when pain management tell you to have a pain med holiday you get increased pain go back on your meds and realise that they have been working as well as they can.

I was told that your body can react to damage iether from an injury or just wear and tear by causing some localized inflamation and that it may (not always ) settle given time but there is no knowing how long this improvement will take or how good it will be. It is over 19 years since I was injurded and I have to say it has taken most of that time for me to learn to live with this pain I do a pilates session every week with a specially trained physio in a group of people with simular conditions and find the support great I have been doing it for over 3 years I do only what I can without damaging anything. I haven't been scanned for many years and so don't know if things have got any worse but going on how I am I don't think so as far as my spine is concerned. I have been diagnosed with RD in sept last year and just begining the the journey to finding something that will control it. So I hope you can get help from your GP because surgery isn't to be rushed into and if you feel you need to talk to the consultant get the GP to request you another appointment Good luck.I am off to drees and feed my horse( he is now 29 and retired when I was injured but I have to get up to see to him) Beast Wishes Sue

Teri66

Well, I went for my GP appointment today and he advised me not to go ahead with the operation route and stated that “you can be worse off having the operation” which obviously is something anyone would like to avoid!
I asked about my condition ‘stabilising’ and he said all we can do is monitor things, which to be honest, I’m happy doing that as some of my medication has been adjusted and some symptoms I’ve been experiencing have certainly settled down.
It was just as well I thought to take along a copy of my last letter from the Neurosurgeon after having my CT scan as my GP hadn’t yet received that, my main concern had been the narrowing to my spinal cord (that must be something to worry about surely?) but my GP seemed unconcerned about that and went into percentages of patients that would have the same sort of thing and that it would cause no symptoms....well they’re the Drs so you’d guess they’d know what they were talking about? I certainly hope so it’s my physical health in their hands.

Teri

stickywicket

I think monitoring is the best way to go. If stuff changes then you can worry about an op but, if not, why bother?

stellabean

Hi Terri I am glad you have had some improvement in your symptoms and have had some answers from your GP.

Shazva

Hi Teri

I have RA and Fibromyalgia.

I also have several things wrong in my cervical spine, including an impingement in my C5/C6, foraminal stenosis (narrowing of the spine), severe degeneration OA.

My neuro-surgeon advised against major surgery on my impingement. He said whilst surgery may cure the impingement, it was likely to make all my other neck problems worse x

Teri66

Hi Shazva
Unfortunately my Neurosurgeon didn’t give me any advice regarding whether or not to have the surgery, which is why I went to my GP to get him to explain some of the medical jargon and help me with the decision making, he advised against it saying an operation would be for last resort scenarios and that I could possibly be worse off by having surgery.
I have had some horrendous nerve pain but at present it seems settled and my medication helps, I still get the odd bad day but at the moment I can cope with it, hopefully it will stay like this and I won’t have the need for surgical intervention, but at least I’m now aware of what was causing my symptoms as when it all first started I was back and forth to the doctors being given one form of pain relief after another and no action being taken to look for the root cause, they even cancelled an MRI because I didn’t reach the ‘criteria’ for one, which makes me wonder how bad does it have to be to reach that criteria?
Teri

Shazva

Hi Teri

I am glad that things have settled down a bit for you Teri and you at least have some of the answers you needed.

Nerve pain is horrendous, so I am pleased yours is under control for now. Can I ask what pain relief you take as my nerve pain is relentless with very little respite. I am on zapain but try and limit how many I take for obvious reasons x