And so it continues.....

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what a let down! 

The guy went through what happened first, then asked me some questions about the pain etc and got me to walk, tip toes, etc etc. 

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my my fiancée who was with me didn't like him too much and neither did I. He didn't seem like he was on this planet!

he kept asking me questions I couldn't answer. The pain killers mask virtually all my pain. The only pain I get is in my back and if I try to come down a dose, I get horrendous pain in my leg down to my heel and back. His attitude was, your obviously not in that much pain today so we won't even think about an operation! 

He was reading a letter from the pain clinic doctor who said I'm not a suitable candidate for an operation, yet the Orthopedic specialist I saw said I need an operation without a shadow of a doubt!

i have a friend who has had an l5s1 fusion, and he said don't have the nerve root injection. Someone who had one at the same time of him hasn't walked properly ever again. 

So if I don't do the nerve root, can I take anti inflamatories instead? He said he wants to do it as a diagnosis. 

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  • Posted

    Hi James,

    I feel your panic and stress been there,I just initially did not know where to turn and then researched the"hell" out of the subject and surgeons and hospitals across the UK, the knowledge has empowered me.

    I assume you have had an MRI?

    My main concern from your summary, is that when you come off medications you get pains in the legs, this perhaps indicates nerve issues.

    First port of call is to get refered to Neurosurgeon (not orthapedic), you have to push insist and do not take no for an answer.

    I am awaiting surgery and have been through it all, the stress of trying to get answers and support almost supercedes the condition.

    As indicated from another person a second opinion is a must and your legal right (state this to them because you can and I did and choose the 2nd opinion for my surgery).

    Dont stress it makes things 100 times worse, think rationally, take control, it's your body and you will get sorted ( I have not had injections but most reserach indicates it is temporary- if its nerve related the longer it is left the more damage to the nerve is caused).

    • Posted

      I have indeed had an MRI. IT SHOWED L5/S1 disc prolapse with left root nerve inpingment and the specialist also found a small bulge coming out towards my spinal cord. I also have (apparently) a smaller than normal spinal canal which is why I am getting so much grief from it. 

      I I definatly have nerve issues. I get pins and needles down both legs when sitting down. The other weird one is I get both arms going pins and needles when I'm in bed sometimes! I had neck pain after the accident but with the high level of back pain is there a problem there which is being over looked? A question I need to ask someone!

      i have an appointment with my GP on Thursday evening, I will let you know what she says about seeing a neruosurgeon but I feel she will 110% back me as she has done so far. I had to move doctors practices after the last GP refused to have a second scan done when I had some serious concerns over the first scan. When I finally got the second scan from a different doctor at the practice which showed this damage I moved doctors as their refusal could of caused serious problems to me in life had I not of pushed. How could I of ever trusted them to do the right/best thing for me ever again? Not that they did to begin with!

      Stress is hard to avoid when I have a wedding to plan, house to move and business at the same time as this ridiculous set of doctors who are hell bend on causing permanent nerve damage in me at the age of 29!!!

    • Posted

      Hi James,

      I have bulging disc in T10-11 pushing on my spinal Cord and all my issues are legs related (burnng, numb feet etc). The arms issues you have also have are probably nerve related it just depends on what nerve are being affected.

      May I ask what part of the country you are in? If your issue is also related  to Scatia there is an amazing surgeon I know whose specialist area is in this field (he is top Neurosurgeon and doing major innovation work in this area - trying to avoid the surgery route if feasible).In my experience, as in all walks of life, there is neurosurgeons and good neurosurgeons.

      I insisted on getting a second opinion, to another NHS trust (a centre of excellence, which I had to research myself) and I am on their urgent waiting list for spinal decompression of the area (sounds similiar to yours). I feel alot of relief because I trust the expertise of this surgeon (although no guarantee of success) Vs my own NHS neurosurgeon when I looked at his profile has spent 2 months here and 2 months there. There is a registar you can check to see if your Neurosurgeon is on the list and deatails the number of operations he has done in that area- one would assume the more operation the more experience (my NHS surgeon was not even on this list).

      Any help I can give, happy to do so, in the early days all I felt was panic and frustration, I did not know where to turn- but getting there.

    • Posted

      Hi Drinxs,

      Thanks for your reply. I'm in Norfolk, the Orthopedic specialist told me don't let them send me anywhere else except Norwich as they have the best surgeon there, then when I said this to the consultant he said nah, the others are ok because two of us now go there1 day a week!!! I though great, so the other 6 days your awful!

      I'm going to bring up all these points with my GP Thursday, could you send me the link to the register? I'm trying to educate myself a bit more so I can arm myself with as much as possible when I go back!

      I've never had to worry about an op so much before. I have my knee caps cleaned out every 4-5 years ask shredded the cartilage at sport on the back of them. That to me is routine now like a doctors appointment!

    • Posted

      Hi James

      www.nhs.uk/service-search/performance/consultants

      I had a look at Norwich Neurosurgeons - it comes up with 0 results ( so none on the registar?)

      I assume you are seeing a neurosurgeon & not a orthapedic surgeon, with nerve related issues you need referring to the former. The Nuerosurgeons are the electricans, the Orthopedics are the carpendars.

       

    • Posted

      Hi Drinxs,

      No, they sent me to Orthopedic and a guy called Andrew cook, he has no operations apparently!

    • Posted

      Hi James,

      I know its compulsory for heart surgeons and Neurosurgeons to be registered not sure if as yet compulsory for orthopedic surgeons.

      However if you have nerve related symptoms you should be seeing a Nuero Vs. Orthop.

    • Posted

      There is quite a lot of ortho surgeons on there, so I wonder!

      I will reply on Thursday with my GP's feelings on this. My fiancée is coming with me so she can vouch for my feelings of what happened.

    • Posted

      Hi James, 

      I think the more information you have the more in control & empowered you will be.

      Surgeons worth their salt will pro-actively publish their data. Have you checked 'linked in'(professional business networking site)  to see if your Surgeons profile is on there. Mine was and that where I found found about his frequent short stays of 2 months across various hospitals - and key reason for me getting a 2nd opinion.

  • Posted

    Hi James,

    I have had these injections with our local head aneathesist who runs our pain clinic. I had them at C4-C5 and C5-C6 and they gave me some relief for about 8 weeks which was great. They did wear off for me and I am back where I started but as with you they see no reason to operate.

    They decided to diagnose me with Fibromyalgia instead, which is just Pain everywhere.

    Don't worry about the injections they really are a breeze as they cover the area with Lidocaine which completely numbs the area.

    Good Luck

    Regards

    Graham

    • Posted

      I'm still rather dubious about them. Heard far more bad than good and the time in which they last for seems to be shorter than the long period you have had them last for! 

      Worst thing is is I am about to move house and my business too! Not good when I'm in this position! Wanted to be rid of the pain before I moved. 

  • Posted

    Hi James and all,

    All you all say sounds very familiar, who was your surgeon may I ask James ??? I had an operation with a consultant called Tim Germon at Derriford in Plymouth, thinking that a Neurologist would know what he is doing. The operation he done was a disaster, and he has totally destroyed the nerve function to my right leg and foot ..... and all he could say afterwards is that he does not know what else he could do ...... he deliberately avoided any further scans, because I believe it would show what an absolute mess he made of my body, and all the Plymouth Trust has done ever since, is ignore the issue, and have lied through their teeth, to cover this appalling dosaster up ...... Many many reviews say the place is a disaster area ........ worst health care ever ....... I would advise anyone to stay well away from this hospital .....   

    • Posted

      Hi Gary, 

      The chap I saw was called Andrew Cook. I feel for anyone who has ever had to see him! Or in fact, him and the Dr Kare of the pain clinic. was told I didn't need treatment, nor injections, just do some leg crunches!

      I think all of them are failing to realise I have a disc pressing on a nerve, I get nerve problems and the Orthopedic specialist said operation and fairly urgently, pain doctor said nah, don't need one at all!

      i would go in tomorrow if I could get it done and finish this endless pain! sad

    • Posted

      Dear Gary that is truly shocking what you have gone through and going through, my heart goes out to you, we put our trust in these surgeons when we are at our witts end. 
    • Posted

      James its very distressing what you are going through i truly understand. When my dsc was pressing on my nerves i was beside myself i felt i couldn't go on. The injections nerve blocker only helped for a short time but as soon as i had my micro discectomy i had no pain so do persevere with second opinion.

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