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Spinal Cord Disorders Message Board


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Thank you both so much for your kind and informed replies - have just returned from appointment with orthopaedic surgeon and they have told me that they think that the best course of treatment at the moment is to go ahead and have surgery to sort out my neck problems. The consultant said they will operate but cannot guarantee that it will stop my neck pain, but the radiculopathy should be helped. It was also pointed out to me that the levels above and below the "bad" bits in my neck are degenerating the same way! so will need surgery again at a later date (or that was suggested). I am not bothered at the moment as I just need a little respite from the constant pain. I have also had for the last few months problems with my lumbar spine, so the consultant wants to try to sort out my neck, then proceed to my lower spine. Apparently when one part of your spine is affected it can have a knock on effect with the other parts ie. thoracic and lumber, so its usually just a matter of time before the other parts go - didn't know whether to laugh or cry!! Seems like its a double edged sword - they can help a little, but can't guarantee a success. I have got to the point that I know I need the surgery, just have to face up to the fact. With regard to your kind words about the pain when doing something remotely physical - I do try to carry on as much as normal, just that when I overdo it I definitely know about it. I have never been one to just lie down and have always had I hope a fighting spirit. Just need this to keep me going a little longer I guess. Anyway will keep you posted of my progress and have been told that the surgery will not be done until Summer - good old British NHS for you. Could be worse I suppose, at least there is a chance that the surgery will work, even though you don't know how long it will keep the other demons at bay? I will look into contacting a pain counsellor, as it seems such a good idea, as well as the other therapies mentioned. Take care and thanks again both of you.
Hi ces, good to hear from you, although not good to hear that you are in the same situation as me, but will be good to hear how you go on. Hope that your surgery goes well and we are nearly in March now so not too long to wait. How long have you been suffering with your neck and how long before you were offered surgery? Hope you don't mind me asking these questions, just be interested in how others are treated by the medical profession. My family doctor is really good and has now put me on Butrans transdermal patches, along with other pain relief (except codeine based as these don't mix), but am still having incredible amount of pains in neck, arms, shoulders etc. Think that at my next visit to my doc will ask about the Gabapentin as I have not heard about this medication. Which level of your neck are they operating on - mine is C5/6/7 I think! Like you said you get to a point when you can't go on much longer and I think the surgeon finally saw how it was affecting me on my last visit. Before I had been one to just put up with pain etc, but not any longer! Hope all goes well for you and let us know how you get on with the surgery and recuperation. Janhad.
Hi Janhad - my problems started last July and I did nothing about them for 2 months - thought it was repetitive strain injury - my only real pain is the scolding/burning pain in my lower arms. When it did not go after a two week break from work I went to the GPO. The GP put me on Diclofenac in September but it did not help. I took myself off for osteopathy but that did not help. Meanwhile another GP thought steroid injections in my arms might help but when I went for them to the GP I saw another GP who said it was my neck and would not do the injections. This GP sent me for an X ray in October. Results showed degeneration from C4- C7. In spite of this the GP sent me for physio. But the physio was not happy to do anything and asked another physio with neurological skills to see me. She was not happy to do anything either. I then took myself off to a Chinese doctor who asked for the doctors diagnosis. I got a copy of the Xray for her but she said where is the MRI? I did not even know what one was! She said ' you have not had a proper diagnosis' and suggested I go back to the GP. This was December and I had seen 5 GPs by then, none of whom had diagnosed my problem or helped me to deal with the pain - which had not really got worse, but did not go away. I had some acupuncture to deal with the pain but it did not go away. By December I went back to my GP and told her I wanted to go private and wanted a referral for an MRI. She said 'we can do that for you under the NHS' I was really annoyed as by then I had had nearly 6 months of pain. I then asked how long I would need to wait for an MRI - she said 2 months so I went private ( I have a policy but with a big excess). The neurologist I saw was very clear and I got his evaluation the day after Boxing Day. He then referred me to this neurosurgeon who I understand is well respected. I am having the op privately but he said it would not have taken much longer on the NHS as the op is essential. I have however spoken to someone who he operated on who had it done on the NHS and she had to wait 11 months from diagnosis to her op. I think it is just because this surgeon is so busy. Any way the date is the 10th March. I am pretty terrified having only ever had one general for a much more minor op. All in all I cannot say my GP helped me at all. The problem is you see a different person every time and you have to go through all the details time and time again.

With regard to Gapabentin it was my brother who suggested this and it fits well with the pains that I have which are neurological rather than aches and pains. However, I had to suggest it myself. I hope you have had better treatment - I now feel happy with the quality of the neurosurgeon - he put my mind at rest and was incredibly thorough but I had to go through months to get to that stage. He asked me if any of the GPs had actually examined me - they had not - he explained that if GPs had performed some of the simple tests he had done then it would have been obvious. I don't think the training for GPs is adequate - if you anything out of the ordinary they cannot manage. My GP told me she had never had anyone with this problem before. However, I am grateful to have full understanding now - I cope better with the knowledge than with the months of not knowing. I wondered if I had MS, tumour etc during that time. Well must go - painful arms from typing this!!!!!
[QUOTE=ces59;4194593]Hi Janhad - my problems started last July and I did nothing about them for 2 months - thought it was repetitive strain injury - my only real pain is the scolding/burning pain in my lower arms. When it did not go after a two week break from work I went to the GPO. The GP put me on Diclofenac in September but it did not help. I took myself off for osteopathy but that did not help. Meanwhile another GP thought steroid injections in my arms might help but when I went for them to the GP I saw another GP who said it was my neck and would not do the injections. This GP sent me for an X ray in October. Results showed degeneration from C4- C7. In spite of this the GP sent me for physio. But the physio was not happy to do anything and asked another physio with neurological skills to see me. She was not happy to do anything either. I then took myself off to a Chinese doctor who asked for the doctors diagnosis. I got a copy of the Xray for her but she said where is the MRI? I did not even know what one was! She said ' you have not had a proper diagnosis' and suggested I go back to the GP. This was December and I had seen 5 GPs by then, none of whom had diagnosed my problem or helped me to deal with the pain - which had not really got worse, but did not go away. I had some acupuncture to deal with the pain but it did not go away. By December I went back to my GP and told her I wanted to go private and wanted a referral for an MRI. She said 'we can do that for you under the NHS' I was really annoyed as by then I had had nearly 6 months of pain. I then asked how long I would need to wait for an MRI - she said 2 months so I went private ( I have a policy but with a big excess). The neurologist I saw was very clear and I got his evaluation the day after Boxing Day. He then referred me to this neurosurgeon who I understand is well respected. I am having the op privately but he said it would not have taken much longer on the NHS as the op is essential. I have however spoken to someone who he operated on who had it done on the NHS and she had to wait 11 months from diagnosis to her op. I think it is just because this surgeon is so busy. Any way the date is the 10th March. I am pretty terrified having only ever had one general for a much more minor op. All in all I cannot say my GP helped me at all. The problem is you see a different person every time and you have to go through all the details time and time again.

With regard to Gapabentin it was my brother who suggested this and it fits well with the pains that I have which are neurological rather than aches and pains. However, I had to suggest it myself. I hope you have had better treatment - I now feel happy with the quality of the neurosurgeon - he put my mind at rest and was incredibly thorough but I had to go through months to get to that stage. He asked me if any of the GPs had actually examined me - they had not - he explained that if GPs had performed some of the simple tests he had done then it would have been obvious. I don't think the training for GPs is adequate - if you anything out of the ordinary they cannot manage. My GP told me she had never had anyone with this problem before. However, I am grateful to have full understanding now - I cope better with the knowledge than with the months of not knowing. I wondered if I had MS, tumour etc during that time. Well must go - painful arms from typing this!!!!![/QUOTE]

Hi ces and thanks for taking the time to answer. Seems like you have had a very traumatic time with the medical profession offering little or the wrong type of help. It seems ridiculous these days that your own gp did not know about spinal problems and the fact that you get neurological problems in your arms etc through defects in your spine! Amazing really when you think about it. At least you now know that you have not a tumour or ms, but even so, degenerative arthritis is still not a good diagnosis as you well know with constant pain etc. Anyway you are now awaiting your surgery, so that hopefully will make things a lot better (fingers and toes crossed!). With my situation, I suppose I was luckier in having a gp who recognised that I was having spinal probs and sent me to see an orthopaedic surgeon after having xrays and then mri at the hospital, whereby I was diagnosed with degenerative arthritis, herniated discs and a retrolisthesis as well to add to the mix. After having physio whereby the physio refused to give me any hands on treatment, I had 2 courses of hydrotherapy and acupuncture - all on the NHS, as I was unable to go private. I then had a long wait (7months) before I then went back to the orthopaedic hospital, another mri scan, then another 3 month wait, whereby I am now, like you, awaiting surgery. I think I will have to wait until Summer before the waiting list gets down to me, but after nearly 2 years of constant pain, a little longer won't harm me (I hope). You must keep us informed of how you get on with your surgery, and don't forget that there are like-minded people here to help and offer advice. Take care and I hope that your surgery goes really well. Janhad.
PS am going to see my family doc this week and will ask about the Gapabentin, as at the mo, transdermal patches and painkillers are not helping me, so will be worth a try to get them on prescription.
Hi Waseb and thanks for replying and sorry to hear about your own neck problems. Just wondered how long you've been having these problems. Are you seeing anyone over them. Be good to hear of your experiences. With regard to the cerebellar tonsillation, I have not asked about this and it was not mentioned on my last lot of scans, so hopefully it is not important or big enough to mention!! I am just waiting for my surgery which hopefully will be taking place this summer. I am counting down the days until I get my admission letter as I am really fed up with taking all the pain medications. Anyway, hope that your daughter is well and that you are taking care of your neck. Hope to hear from you soon. Janhad.





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