Cervical Spondylosis and Spinal Stenosis spasms on face?

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I'm 35 years old  was diagnosed with CS and cervical spinal stenosis in April after my doctor sent me for a head and neck MRI scan. My manager at work has and is making life very hard for me even after a Occupational health referral in my favour. Has anyone else had problems with their employer? I'm on Gabapentin, Amatrypilin and codeine which helps but I've felt constantly foggy with it too. I've been dropping things as my hands have a numbing sensation alot of the time. In the past few weeks I've started to have  what you'd call an comfortable spasm in the left side of my face/ear. After trying acupuncture, physio, steroid and nerve block injections that didn't help and have made me if anything feel worse my neuro consultant has recommended surgery to remove the discs. My friend asked if I've been tested for MS. I mentioned it to my GP who said as I've not got vision problems it was unlikely and only a MRI scan when your symptoms are active would diagnose it and to mention it to the neurosurgeon. I didn't want to look like a hypercondriac so didn't say anything. Has anyone else had the same symptoms? 

Thanks Alison

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  • Posted

    Sorry to hear not only the pain you have but the added pressure from work Syd. 

    I wish I could be more helpful but the only thing in your post that caught my eye was the Gabapentin that was prescribed. I was also prescribed this medication normally used for patients that suffer from epelictict (sp) conditions. I was prescribed 600mg of this medication and believe me after the first time I took it I TOSSED IT. Be very careful what doctors prescribe. If it doesnt work do not continue to take it. Codine is fine but it is a short fix with other problems. 

    Good luck and I suggest contacting an attorney with your working conditions.

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    • Posted

      Thanks Daniel yes the first time I started on Gabapentin I was on 3 x 300mg a day plus the Amatrypilin and codeine. I felt like a walking zombie and after sticking it out for 2 weeks I stopped. My consultant put me on pregabalin but that didnt help and made me have horrendous acne in that I didn't want to go out anywhere when I was taking  it. I'm back on Gabapentin 3 x 100mg but I don't find it helps. Thanks for the advice. I've consulted my union rep at work and looking into what action I can take.
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  • Posted

    You should never be afraid to ask your surgeon anything...period. If you are, I suggest you find a new surgeon. This is a very serious problem and you need to feel comfortable with your surgeon. My empolyer was not thrilled with my situation, but my surgeon stated I was completely disabled until after my cervical fusion surgery. There is nothing your employer can do about it. I suggest contacting an attorney. After my surgery, I was still experiencing immense pain and I still could not work. I was placed on long term disability and I am still going through injections and I am on heavy narcotics. I have damage to my spinal chord and my surgeon does not believe I will ever be able to go back to work. I am now going through the process of disability retirement. I know you are young, but I too am only 48. I also have numbness in my face at times and I still have it in my arm and hand and now it is traveling into my leg as well. I am scheduled for another MRI next month. Please talk to your surgeon or get one that you are comfortable talking too. I know firsthand it is impossible to work when you are in all that pain and on all those drugs, so have your surgeon write you off from work, get long term disability and seek an attorney if need be. Good luck.
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    • Posted

      Thanks Bethany for the advice. I'm sorry to hear how much you have gone through and hope your MRI goes well next month. I was signed off work for 5 months and had to fight everyday to get work to put in place reasonable adjustments like a special chair, adjust my duties as my job is very physical and my hours. After 12 weeks with the unions help I got a Occupational health referral who advised I was unable to return to work until they had made the adjustments and I'd had the steroid and nerve block injections. After 5 months work got me the chair and had talked to me about a phased return to work. My second referral to Occupational health following the injections noted I was likely to be covered as disabled under the legislation but it was a decision that only a tribunal could decide. My manager decided to query it. The union suggested I request a reduction of my sick leave as work had failed to make reasonable adjustments that I requested on day one of my sick leave however even though my manager can agree to this at her discretion she has said she won't and quoted the guidance saying I'm only allowed to take time off under DAL for appointments. I had to contact work regularly whilst I was off to try and get anything done and only got a meeting with my manager after 10 weeks because I got the union and top OH lady involved. I went back to work on reduced hours this week because I thought it would help take my mind off the pain plus I was worried about my sick record given I've been told I will need to have surgery and therefore will be off sick again. It has been hard especially as people in work asking questions saying I look ok. I know there are worse things people are sick with but I feel like my life is on hold at the moment. Your right about speaking to my surgeon. I will definitely discuss it with him. Thanks for your kind words and advice. 
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  • Posted

    Hi, I'm 35 also. I also get the face tingling but not very often. Also get burning in ear lobes. Weird!  I think it's muscle spasms coming from the neck and shoulders or nerve entrapment. I was diagnosed with c6 c7 disc bulge with nerve impingement and degeneration in all higher discs in jan. I initially started with headaches at the back and top of head but recently been getting upper back and arm pain and weakness and also been referred to neurosurgeon for possible fusion. I have tried physio etc but no relief. I am scared but also excited by surgery as it is an option that MAY provide relief and allow me to get on with enjoying life. I would like to hear from other people who have had the surgery. Could do with a confidence boost? My neurologist referred me but pain management doc thinks neurosurgeon will say to treat conservatively which would be fine if I was being offered anything. Sorry went off on a tangent. Yes I have had similar pain x x
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    • Posted

      Thanks rachd123 for letting me know I'm not going mad and someone else feels the same way. I have C5, C6 disc bulge and impingement/degeneration too. I have the upper back/neck/arm pain too with headaches. When people look at you they think nothing is wrong with you and I've had my manager actually say that I look fine. Since the injections in September I've had sciatica (my doctors assessment) in my left buttock too. I've been offered surgery which will hopefully help as I don't want to have to take Gabapentin etc for the rest of my life. I am scared too but it's my last hope. My neuro consultant said I would need least two operations as they can't do it all at once. I hope you get the option too. I will let you know how I get on as he said it could be as early as December xx
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    • Posted

      I have right sided sciatica too but the pain goes if I take paracetamol so not as much as a concern as the neck pain. I know what you mean. On the outside I look fine and the majority of the time I just try and get on with things but sometimes it's impossible. It's hard seeing other people get on with their lives whilst feeling at a stand still. Good luck for your op. Hopefully in 6 months we will both be on the road to recovery. Everything takes sooooo long. I was on gabepentin but came off cos I kept having to increase the dose. The withdrawal was a bit rough for a couple of weeks. Make sure you taper down x x
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    • Posted

      Thanks rachD123 it's nice knowing someone else feels exactly the same way as me.You took the words out of my mouth about feeling at a stand still. It's like being in limbo. For me I was hoping to meet a guy and settle down but its hard to meet someone when you feel crap and everyone else is settled down plus I can't drink on the medication as can just about function!  I hate taking the Gabapentin and have lost my appetite but after the injections my consultant said I needed to take them to help the nerves settle down so I'm too worried to stop them now. I don't feel any benefit and take co-codomol more but they have problems too. It does take so long to get things moving but like you said hopefully we will be like new ladies in 6 months time ;-) x
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  • Posted

    hello Alison........ hope i can help - i neuro guy advised i had c5 c6 csm in july and spinal stenosis as well, following a scan, i work for a well known dept store who have been great....

    2 weeks ago i had the c5 c6 fused , and was out the next day !!!!! even after a 3 hr op......... no pain( other than my self inflickd hammering - shoulder pain stupid me !! )

    I was referred priority as the spinal compression was great.

    The lumbar has to wait BUT following this first op only legs ache but no burming ankle pain.. which i had before.

    I will be 6weeks before i see the guy again.

    My advice is if you need a cs disk replaced or fused say YES as soon as possible........i had fear yes but was totally put at ease and it went well,

    I have the rt h fingle tingle, and slight numbness - this and slight clumsiness BUT this will not go the operation is to STOP any further spinal deterioration .

    Do please go for the op and advise the neuro guy of your further symtoms,

    You just come out with a dressing on and wound may be slightly swollen, but mine is down and no pain - my dressing came off after 1 week and was clean, the cut was not stitched, but down with disolve stitches, and so far wow hardly noticeable

    Do note - swallowing is slightly awkward at first- avoid biscuits, crisps chunky bread!! but i could eat straight away after the op.

    This gets ok after a week, but i did cough a lot, 4 boxes of kleenex needed!!!

    I know i have gone on a bit but hope it helps and puts you at ease...

    Please please go for the op asap

    kindest regards love A

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  • Posted

    hi just a footnote to add....... i appreciate we have to be annon and not really mention names or where we go for treatment

    Suffice to say mine was in the North West, at a leading Neuro centre and the team were magnificent.

    my thoughts are with you

    A

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    • Posted

      That's good to hear cheshireguy. I too am in the north west but yet to get a date to see the neuro surgeon. I have been struggling since June 13 but they wanted to leave it initially to see if it would get better with conservative management. I didn't seem to be doing too badly for a few months but worsened July 14 with new symptoms. It's nice to hear positive feedback for the surgery. Thank you
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    • Posted

      Thanks A for your kind words and advice you have definitely made me less worried about opting for surgery. Did the numbness and tingling not go after the op? My neuro consultant said I would need a second op because of another disc and narrowing further down my spine as they can't do it all in one. I would be going to a leading neuro centre in the north west too. Did you have any problems with your voice afterwards? I was told about the risks and I was shocked but then did have a giggle at the thought of me ending up with a horse voice as the consultant said there was a chance that could happen. Thank you for the practical advice too, I will stock up on the kleenex ;-) Thanks Alison x
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    • Posted

      Hi Alison............

      I was under for about 3 hrs, on coming round, i had my voice ok, throat fell sosore and as if it had a gobstopper in it. The throat was not too bad, and straight away i could have tea and a biscuit- dunked it .Did have the fish in sauce later and that was good. Swallowing was not brilliant but keep to soft things first few days. no crisps chunky bread etc, taost was ok if soft, but bread was not easy to get down. Clear soups were good, but the end of a week i was fine.My dressing came off after a week and was clean, no further dressing, yes swollen but going down nicely, and hardly visible after nearly 3 weeks.

      I did have sone back ache( but due to my stupidity the week before although my physio advised i would have anyway top of shoulders )

      Do go for walks, short at first, this helps, the op has relieved my lumber problem....so i can actually walk... still some leg ache but far better than it was.

      Sleeping has been a problem but last night was brill- a goos physio will know what to do a massage helps gently done hope this helps .. A.

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    • Posted

      Hi again........ just thought too........... ICE CREAM was amazing for the first few days after surgery..... any flavour !!!! but not with any bits in!!!

      I had no pain in the incision site and it's virtually unnoticeable now- but don't touch it - the dressing will be on for a week, and mine came off without any problem.. and was very clean.

      i will code where i had it done ' sr '

      it this helps. kind regards a

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    • Posted

      Thanks A for the advice it's reassuring to know these things and definitely makes me feel more at ease now I know what i can expect to feel like afterthe operation. 

      I was having massages which were relaxing but stopped after the injections as I was worried if they would make it worse however as the injections didn't help I have nothing to loose so will be booking one tomorrow now! 

      Also good to hear about the ice cream! 

      I don't know where you mean but thanks for trying to let me know :-) 

      Just wondering what you did (stupidity comment) with regards to your back?  

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    • Posted

      Hi Alison. .. well I stupidly hammered out some carpet grippers and did my shoulder in... feel awful knew I should not have done.made this worse and put me on edge... appears no damage but physio allowed to sort me which is good news... went Monday had a different partner in the practice and she was re assuring in that some of the pain would be post op...I go again tomorrow to see usual guy... The massage on Monday helped...

      Post op taste... taste buds did go chocolate tasted awful, and no real taste for a week, but friends took me out after 10 days and I had steak pud and chips now I could taste that... and the pint of beer too!,

      Wine tasted well no taste but was ok last night I had a glass just one small one

      I will try to update ''s royal '' does that mean anything to you where I had it done..... The only bit that scared me was as the anesthetic was taking hold the oxygen mask went on and the smell was awful.... I freaked a bit but then I was out for 3 hrs.

      Hope this helps and my thoughts are with you....kind regards a

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    • Posted

      I'm glad to hear you haven't done yourself any damage and the physio is helping. It's hard to not do things sometimes even if you think they might not help your condition. 

      Thanks for the information about the food and drink. I haven't really had a drink in months as after two glasses of wine a few months ago I felt I had a hangover the next day :-( Ive never been a big drinker and a bit of a lightweight so don't really miss it. Have you found any difference drinking with your medication? Do you still take any medication now you've had the op?

      I'm not good with anaesthetic but have told my neuro consultant so hopefully I will be ok. Thanks for your kind words and advice. 

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    • Posted

      hi Alison

      As i have the lumber stenosis - as well ( the 1st op has fixed the burning legs ) still ache but i can now walk which i could not before very far....)

      So for that i take amytripyline) just 1 at night. Do have paracetamol for the back, tried naproxin but did not do anything apart from not being able to go to the loo...so that given up on Drs orders..........

      In hosp they will give you paracetamol i would think if any pain, i had no pain for the wound, and is very good now almost imvisible.

      Have my taste back now.I'm almost 3 weeks post op, it's just that i'm quite nervous and tend to worry unnessesaarily really......

      I kind friend stayed my first two weeks and now he is on hol for 3 weeks so feel quite empty........ cannot expect him after as he has his life to lead and very good job which needs concentration.

      Kindest regards A

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    • Posted

      Hi A 

      Glad to hear you are able to walk now and your wound has healed well. I take Amitrypilin too at night which I find helps me to sleep but I have a constant thirst all the time and have lost my appetite. I don't know why maybe it's a side effect of the medication but like you I worry about stuff so it could be stress related? 

      I got a consent form and a post op questionnaire from the hospital yesterday so I'm guessing I may be in for the op before Christmas. I also found Naproxen did nothing for me apart from upset my stomach. Your friend sounds like a great guy. I understand how it feels as I live on my own although I am close to my parents who don't live far away so I'm lucky to have them. Will you have to have another op? 

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    • Posted

      Hello alison yes amytri piline does make you dry if you have the pre med date yes its not far away... I had an awful night Friday both hands tingled all night really frighten me.... I can go to the hospital Monday am .thankfully last night it settled. Yes I think I got in a state so very stress panic related. Last night slept right through which was amazing.my physio is working on my back and that has eased, I did not make life easy for myself.my friend was truly amazing looking after me, we do skype so I am in touch which helps. Kind regards a

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    • Posted

      Hi A, yes its a bit embarrassing somtimes as I'm always drinking water so spend alot of time in the toilet plus because my mouth gets dry I sound a bit slurred so people might think I've been drinking! Lol Sorry to hear you had a bad night on Friday no wonder you felt that way with your hands like that but glad you slept well last night. I hope that the tingling gets better in time and the hospital can help you tomorrow. I had a neck/back massage on Thursday but felt more pain on Friday.My stomach was in bits yesterday after I stupidly went out Friday night with the girls after months and had all off three drinks. It's still a bit tender now and will not be drinking again! I'm turning into a old woman :-( thanks to you I just want to get the surgery done  now and hopefully get better. I can imagine it helps when you have amazing friends like yours ;-)
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    • Posted

      Hi just seen you post. ...somehow my lumbar pain in the legs has returned this morning... I can walk but the pain is greater than it was this week. I just take paracetamol when needed.the pre op visit takes about an hour and a half...I was ok with the anesthetic but before you go the oxygen mask comes on which I did not like.hope all goes well with you.. a
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    • Posted

      Hiya, sorry to hear about the lumbar pain returning. I'm the same and only take painkillers when I really have to. I just want to get it done now. Not looking forward to the oxygen mask but thanks for the warning. I will let you know how I get on ;-)
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    • Posted

      Hi I'm having the surgery on Friday so going for my pre op tomorrow and then admitted on Thursday. Feeling a little bit nervous now as I only found out about it a week so don't feel prepared enough for it but then again I probably never will be! How are you feeling now? Have you had any more treatment to help with the lumbar pain?
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    • Posted

      Hi,

      I have an appointment at the same leading Neuro Centre in February who did you see there?  Could the name be the same as the 5th Month of the year?

      I am still getting to grips with my diagnosis of CS, I have been in horrific pain since August last year,  2 x 400mg Gabapentin 3 times a day, 2 x 500mg Co-codamol 4 times and day and 2 x 400mg Ibrupofen again 3 times a day.  A neurologist carried out 2 Epidurals and the second one worked thankfully so if I take my tablets religiously I can get through the day.  It is a very long story but I was private now I have been referred to the NHS because it is not a short fix.  The Neurosurgeon informed me that it will get worse (I am still trying to understand what will get worse) and that I will have to have the operation eventually but he kept saying I was too young (48) and it could paralyse me.  I think half the time they scare you to death because they do not explain exactly what the problem is.  So sorry for the life story but could you please tell me what exactly happens when you go to the Neuro Centre, if you have the time.

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