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Spinal stenosis (cervical/neck).

feirfeir Posts: 356Member Pioneering
edited August 23 in Disabled people
Finally got my diagnosis and i have a bulging herniated lumbar disc and spinal stenosis in my neck (in multiple places), i don't have symptoms of osteoarthritis but have had symptoms of rheumatic arthritis. The cervical stenosis is causing me the most problems and i'm just wondering if anyone has any advice for me.

I can't seem to do anything much without causing myself pain, so i have been resting as much as possible for 9 months (many days been unable to move anyway it's been that painful) and since leaving hospital i have been literally not moving at all unless necessary, the not moving has eased the pain off considerably so i felt good enough to go for a 15 min walk today and the pain is back again (in new areas as well as old). Obviously i can't live the rest of my life by not moving, it's boring and frustrating, so i was wondering if anyone else has had/got this condition and has any advice on what improves the condition, and/or if you have had an operation and if this has helped you? I'm seriously considering the operation myself and you probably don't need to convince me to have one, i was hoping to hear others experiences despite this.

Replies

  • jamie1965jamie1965 Posts: 85Member Courageous
    I also have this as well as other issues I have seen the specialist and have new pain killers on top of the ones I already have I don’t really have any strength the my left side due to the narrowing compression on my nerves so tend to drop things and struggle to get dressed and do my hair cause I cannot lift my arm up properly the guy said I will probably need the compression realest surgry due to also having fibromyalgia he said not to expect the pain to fully leave but could gain some of the strength back in my arm but not all surgery is a success I believe they said there is 60% chance of improval but it is better than doing nothing cause that can lead to permanent nerve damage I see them again on the 27th feb and if they can give me the surgery then I will be accepting it but it is a personnel choice I have known a couple of people who have had it done and they said that it is not easy for a couple of month hardly moving and having to see hospital for years so they keep an eye on you but physio helped them after doctor said 5 days and the metal should start to graft to the bone but like you said you cannot go on living your life like this on The bright side we set the metal detectors off at the airport
  • feirfeir Posts: 356Member Pioneering
    that last line made me giggle. :)
    thanks jamie, that was really helpful especially as i don't actually know much about treatment itself. i don't seem to have lost much strength luckily but because of the numbness i am clumsy and bearing weight on anything causes pain.

    yes my concern is that i end up with permanent damage or have to rest forever, i'm already pretty sure i want an operation but i will ask about the risks first and then decide. hope everything goes well for you at your appointment.

  • jamie1965jamie1965 Posts: 85Member Courageous
    Thank you good luck keep me updated 
  • duckett123duckett123 Posts: 81Member Courageous
    duckett123 I have had op on my back for lower disc problems 3,4,5, spinal damage as well and neck pain it do not stop it but helps
  • jamie1965jamie1965 Posts: 85Member Courageous
    That’s what my doctor said that it would not get rid of pain especially as I also have fibromyalgia but would help give me strength back in my left hand side just want to be able to lift my arm above my head and not drop the kettle lol
  • flumpflump Posts: 7Member Listener
    I too have this in my right side neck & lumbar,diagnosed in 2014 unfortunately I can't have an operation as I had a disc taken out of my neck some 20 years ago a spur bone has grown which is touching my spinal cord so they can't operate. Nothing has been mentioned about one on my lumbar?  I suffer with pain 24/7 but I guess without my medication I would be so much worse. I have put 3 stone on since being on medication and I can't exercise due to the pain, anyone else have this problem? 
    They did tell me my condition would never get better, just worse, so I made a bucket list of the places I want to go and the things I want to do,im slowly getting through it. 
    Flump
  • feirfeir Posts: 356Member Pioneering
    Yeah i've been told it won't get better as well. I can't do anything now without being in pain so i've had to literally stop moving, medication doesn't really help for me unless the pain is mild (it usually isn't mild unless i'm not moving).

    I'm being booked in for a discectomy on my lumbar region after i saw my consultant again last week, he said you're only in for a day as well so it sounds like a fairly easy operation. It should relieve some pain and my mobility might improve also. You should look into it @flump ? They can't do anything about pain from spinal stenosis in the neck anyway, so i got told, all they can do is help with weak arms or numbness in the limbs. I think it's just the way the nerves are in the neck that makes this so.

    It's **** this disease, i'm also in therapy now because i have moderate depression but that is helping so that's good i suppose.

    My consultant has said the same as yours @jamie1965 but things are getting moving now, hows things going with you?
  • LyndaMcKLyndaMcK Posts: 25Member Connected
    Hi guys,
    I just had surgery 4 weeks ago. It was bilateral decompression and mechanical fusion on L3 / L4.
    So far I am feeling much better! I can climb stairs again and I am able to walk again without looking like a duck and crippling pain! I am so pleased!
    As several of you mentioned above, I still have bad pain in my back if I walk on an uneven surface or I am not standing completely upright, but my mobility is so much better.
    Unfortunately as we know, it is degenerative and I've been told I will probably need another op in time, but I must say the benefit of the op well outweighed the risks.

  • LyndaMcKLyndaMcK Posts: 25Member Connected
    I forgot to mention above that my mood has also improved significantly! I knew that the chronic pain was causing depression, but just didn't realise how much!
  • feirfeir Posts: 356Member Pioneering
    Hi.Thanks @LyndaMcK that sounds good. i really miss my mobility.

  • feirfeir Posts: 356Member Pioneering
    edited May 2018
    My legs have gone stiff, the leg that went numb now has rock hard muscle in it now and nobody knows what that is, also the back of my thighs are stiff. it's affecting my mobility (i tried to walk a little further today as the weather was nice but this stiffness made it hard to), does anyone know if this will go after the operation, or is even a reason why i shouldn't have the operation? Told my consultant and he doesn't seem concerned so i kind of trust him and think as my operation is getting nearer i am panicking (went for pre-op diabetes tests yesterday).
  • bluewaterbluewater Posts: 10Member Listener
    Hi everyone I'v just been reading your posts and understand your pain.ive had neck pain for years then in November woke up with the most terrible pain from neck too right shoulder and arm it can reduce me to tears,and the pins and needles and numbness drives me mad,after mri they said discs 5'6'and7 bulging with moderate narrowing of cord, i too was very active but everything i do starts of pain.sorry I'm going on abit but it is nice to talk to people who understand and it's good to get things of your chest.thankyou in advance for anyone who reads this.
  • feirfeir Posts: 356Member Pioneering
    I've been taken off the operation list for now. All my top teeth are falling out and that needs sorting first.
  • Chloe_ScopeChloe_Scope Posts: 4,029Administrator Scope community team
    I'm sorry to hear this @feir, how do you feel about that?
    Chloe
    Online Community Officer
  • feirfeir Posts: 356Member Pioneering
    Not bothered really, without the proper support i'm scared to risk what little mobility i do have now so glad that decision has been taken away.
  • brutusbrutus Posts: 5Member Listener
    Hi, Im new to this site but il explain my predicament, I have 3/4, 5/6 and 6/7 fused in my neck having 2 operations some years ago, I started getting neck and shoulder pain 3 yrs ago and retired as a result, I  had a mri scan in 2015 which showed I had disc herniation at 4/5 , while I have “quality of life” the surgeon will not operate as there would be complications because of my previous operations so I could be at risk. 
    My GP told me only when I started stumbling and dropping objects would they consider operating so here I am slowly deteriorating with symptoms I recognise from the past and hoping it doesn’t worsen quickly. I am 62yrs.
  • Adrian_ScopeAdrian_Scope Posts: 3,036Administrator Scope community team
    Sorry to read this @brutus. You must be so frustrated. Are you getting much support for the pain?
    Senior Online Community Officer
    Scope
  • Chloe_ScopeChloe_Scope Posts: 4,029Administrator Scope community team
    Welcome to the community @brutus. Are they able to provide any support that might help?

    Chloe
    Online Community Officer
  • brutusbrutus Posts: 5Member Listener
    Told to take 20mg amtripyline and co codamol daily, tried naproxen in the past, doesn’t work for me, back to drs in 4 weeks, being honest I do not want the operation because of the risks, because my last 2 operations had separate incisions plus scar tissue etc it makes the operation slightly more difficult.
  • TopkittenTopkitten Posts: 962Member Pioneering
    I am currently suffering my second internal Cervical rupture. The first was fused in 2005 using a plastic cage and, apart from a few headache issues from sleeping awkwardly, has been very successful. The second has never repaired and now will never be due to a mistake by the senior consultant and everyone in his department covering up his mistake and refusing to even speak to me any more. The original surgery I had was micro surgery (Anterior Cervical Discectomy and Fusion) and the reason for the mistake was a long delay during which bone growth prevented me from having a repeat surgery despite the surgeon putting me on the list for one (a colleague of his spotted the mistake and discharged me). Due to the nature of micro surgery there is virtually no scar tissue and disruption to the body is minimal despite being carried out from the front of the neck. Unfortunately there are still few surgeons in the country qualified to do such surgery and the guy who did mine in Romford left the country.

    TK
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • Chloe_ScopeChloe_Scope Posts: 4,029Administrator Scope community team
    Hi @brutus, I'm glad some things have been able to help, even if only a little! I imagine the more operations you have, the harder it would be to operate again?
    Chloe
    Online Community Officer
  • brutusbrutus Posts: 5Member Listener
    In a way I’ve been lucky, my last operation was January 2003, but the more fusions you have it creates more load on the adjacent discs, my fusions were with bone taken from the pelvis,I get the impression if I had been a lot younger they would have gone ahead and operated.
  • Chloe_ScopeChloe_Scope Posts: 4,029Administrator Scope community team
    I can see why that would make sense @brutus! Do you have any plans for today?
    Chloe
    Online Community Officer
  • brutusbrutus Posts: 5Member Listener
    Going for along walk then hopefully paint my man shed 😊
  • Chloe_ScopeChloe_Scope Posts: 4,029Administrator Scope community team
    Sounds like a good plan to me! I hope it goes well :)
    Chloe
    Online Community Officer
  • deb74deb74 Posts: 324Member Pioneering
    I have got cervical spondylosis and scoliosis as well as other things. Had an mri a few years ago and was told they couldn't operate as there was a risk of paralysis. At the time I was in so much pain that I would have been willing to take that risk!  things did get better for a while but have now started to get worse. I struggle to move my neck properly and had to give up driving. I had another mri a few months ago and was told that I may have to have an operation some time in the future if it continues to get worse. I was told that the vertebrae in my neck were compressing. I have been given some exercises to do by the physio but they make things worse and make my neck go into spasm! 
  • brutusbrutus Posts: 5Member Listener
    I see a physio at my own cost once a month,  as I have been fused he does not go near my neck but manipulates my muscles around my shoulders which often tighten up and cause a vice like grip around my neck, my GP and consultant stipulated no one was to go near my neck .
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