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New member Cervical Neck or ????

addictionconsultaaddictionconsult Posts: 23
edited 06/11/2012 - 8:49 AM in Neck Pain: Cervical
Hello everyone:
I have cervical disc bulge C-5/6, the neuro said there was some spinal cord impingement. wanted an immediate ACDF, he scared me to death and did not tell me anything about the procedure. It is about a year or so since I met with him.
I had the condition for about three years, and two years prior to meeting NS.
Of course now my problems have escalated. I was sent to PM and first cervical epidural was great second just seemed to miss and was very painful No relief Just worsening pain.
The newest and most troubling symptom is: forearm burning sensation both arms from wrist to elbow. Never stops and can drive me near going crazy.
Steroids bring some relief via IV, and lastly morphine stopped the feeling dead in it's tracks.
This past week the burning feeling has moved to right foot and eyes, they burn like an allergy. It is pure hell. Plus my neck hurts so bad and I feel a lump there right at shoulder level.
PM doc uses fluoroscopy, and is same clinic ( spine as my NS whom I have not seen) Doc at ER had CT with contrast done to look for spinal changes and found none, He gave steroids and Valium and pain was gone. I felt great for about 2 days.
I have been to ER 6 times in past 2 months, and they have checked most things. My family doc is aware and does not seem to think there is any emergency.
My question is this.
With all the docs looking and aware, Is it unlikely; there is a serious spinal change going on?

I am frightened since I passed on the ACDF, I was scared of the surgery then and just had recovered from carotid surgery and know I am prone to infection.So I wanted to get a second opinion on the ACDF w fusion.
Did I make a mistake and now my condition is getting worse?
I know you wont be giving medical advice. Im just thinking I really screwed up and should have gotten the ACDF. Now I cant No insurance.

Feels like an undiagnosed nightmare.
Might have to go to ER again for some relief.
Really don't know what to do. In pain and scared.


  • Greetings, and Welcome to Spine Health!

    Much of the symptoms you've described in so far as the pain radiating out, and the burning down your arms I had on the right side when my C5/6 herniated, and then ended up on the cord. I put off surgery (ACDF) for almost 2 years as I too was scared out of my butt that a sharp object would be > < close to my spinal cord!

    Near the end, my NS on the latest MRI and exam warned me I could be paralyzed if I even had a small fall or a minor car accident - I had the surgery. I was freaked out over that pain on only the right side, so I am sure you are not too happy with it being bilateral. If you are getting issues in your legs or feet, I think if it were me, I would be getting back with my surgeon, as this is a change such that your surgeon should be aware to see what is going on, and what your status is.

    Unless trained in the spine, most doctors don't always "see" the connection of symptoms. When able, I (if it were me) would get with a spine specialist or your surgeon. Please let us know how it goes.

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • First let me say welcome to spine-health. Have a look around and you will find many members whom have gone through with surgery and are either recovered or are recovering.

    As far as the question of did you make a mistake by not having surgery, not really. Surgery is a very personal choice and only you can make that choice. Many times we see members ask when is surgery right, my response is you will know when it is right for you. That time is when you would rather cut off your arm than have to continue with the pain. You sound as though you are there? I would call the spine surgeon back and make a appointment. Dependent on how old that last set of mri's are they may want some new ones. Mri's are very good at looking at the soft tissue. They may also want some flexion/extension x-rays to look at the bone. In some instances they may even do a myelogram with CT to get both bones and soft tissue. Of course each surgeon has their own protocol on what they choose.

    Either in this post or some place else I read how many times you have gone through the ER. The ER is just going to reduce your pain not so much as find any permanent fixes, unless they can see a clear cut issue with the cord. In my experience they don't usually do that extensive of testing for that diagnoses, unless it is a trauma coming in. Even then sometimes that degree is going to be done depending on the level of the trauma unit.

    One thing I would do when you plan on seeing the surgeon is have all your medical test and procedures clearly outlined. While you might think the doctor should know all of that don't assume anything just have it ready. Also have a journal documenting the pain that you are dealing with daily. You might also want to set a appointment up with a second opinion that is completely independent of the doctors you been seeing, just for peace of mind that it is all good. Many insurance companies want those done anyway before a surgery. If you get differing opinions then you might want to see a third surgeon as well.

    Keep us posted on how you make out. Once again welcome to spine-health.
  • Hello

    Thank you for the welcomes, I have been using the site as a reading source and just put up first few posts.
    I appreciate the members experience, and yes, Brenda: I am really ready and at the point. ( thinking you're dying, or having some kind of stroke works great as a persuader.

    Tamtam: I thought of trying to severe the nerves myself with a kitchen knife...Not a great plan but at the time, I was desperate.

    I am going to follow the course you outlined and has been mentioned by others, Get back with NS and maybe another NS. Ask more about the surgery.
    I think what really scared me off the first time is like man I have read: The fear of the surgery success , complications,...
    But the worst part was the Doc not telling me anything about ACDF w/ fusion and the post-op recovery. All he said was: " 50/50 shot and started scheduling it. " I had to google it and watch youtube videos of the procedure. Wow you want to talk about freaked out. I would not recommend this to anyone. I figured If I'm near death and unconscious, They can go ahead... but otherwise NO way.

    I had carotid surgery and I was down for 6 months, I kept getting infections ( no MRSA) but a serial attack of colds and flu. Then less than a year later they are talking about cutting the neck open again......! I woulda jumped right in, if it were from the rear neck, but the anterior approach really killed the idea for me.

    I have a friend who sells medical devise to NS the cages for the spine and hardware, He actually sits in surgery and guides the Docs on proper installation of the "cages". He offered to get my medical records to a few of his best NS's. Im gonna try to see if he still can do that.

    Thanks again for your replies. I am going to follow up this week. Last nights ER visit was the 3rd time I have heard both Lyrica and Gabapentin, I know the ER docs are not spine specialists, But both had said, No spinal cord symptoms... This is nerve pain radiculopathy ( not sure of the spelling on that one. The decadron has me feeling pretty good still today: No arm burning or neck pain.... just the steroid cold and flu like symptoms.

    I'll keep you posted, I am pleased to read others stories, This is a great place and supportive community. Thank you again.
    ( One of the worst feelings Is feeling alone and like no one believes your pain or symptoms and here that is not the case, It is such a relief) :)
  • I seen your comment about if it had been posterior you would have jumped all over it. Well here is the problem with that, the posterior approach is far more risky and painful and the recovery is much longer, that is coming from someone who has had both.

    The one thing you need to understand about the anterior surgery is that sometimes the anticipation of the surgery is far greater than the actual surgery itself. Many members wake from surgery and the pain is instantly gone, as the compression from the nerve is released. While other times it may take some time to tell. With the nerves it is kind of you never know which way they will respond. I am glad your going to seek out some opinions and have someone helping you. Sometimes once the pain is so bad you just don't even feel like researching it.

    One thing to keep in mind reading the forums is that there are so many whom have the surgery and are long gone, back to normal busy everyday living. Typically you will see members posting whom are just entering or just after surgery, but then in the neck forum for the large part they don't stay around very long.

    Good luck and keep us posted on how you get along. If there is ever anything i can do, don't hesitate to pm me. Take care.
  • Addictionconsult,

    Like I've alluded to, and Tamtam point blank stated about surgery, *you* will for sure know when it is due! Like she noticed, the multiple ER visits, your concerns, and your symptoms, I'm very glad to hear you are at least going to go back to your surgeon, and too maybe get another opinion - nothing wrong with that at all!!

    My surgeries to date have been anterior. Tamtam as had both anterior, and posterior. I've sought her consult on the posterior (revision for me) surgery and its recovery and such. I vote with her. If they are still offering anterior, that is MUCH better for your recovery.

    On my first surgery, when I awoke, all pain was GONE, and the residual numbness too was gone. My second level, the damage was already done. The good out of that surgery is the burning in my shoulder blade was gone, but the weakness and numbness to this day remain - EMG testing revealed no appreciable change pre to post surgery, and as such, it is believed to be permanent - *but* further damage was avoided. That to me even makes that a success. I have other issues going on in part due to dissimilar hardware, but that's for another day.

    Please keep us posted on how it goes. *HUGZ* We're here for ya!!

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • I appreciate your posts. Still scared, But working in logical mind a bit more. Cant really continue route Im going so going to try to get some appointments made. I was put on lyrica and opted for gabaP. The decadron shot worked for 2 days but burning came back with a vengeance tonight. Finally took a GabaP after I realized I was getting worse. Going to turn into bed now. See if it works Scared to take. Not sure why.
    Make some calls tomorrow.
    Thanks again for your experience.
  • Off to bed shortly myself! By the way, my hubbies name is "Robert"...not Rob, Bob, well you get it! (G)

    As for being scared, NORMAL! I put off my first cervical surgery for almost 2 years, and put up with pain sometimes off the 'logical' daily scale. I regretted it (the fears) when I awoke! Like you will see on here in many instances, *we* fear the surgery a lot more and then find after, it wasn't that bad. Sure there is surgical recovery and that pain, but it's different (and less most times) pain.

    As for medications and fears there. I know I've been in those shoes due to me finding as I age, more and more allergies! When I get new medications, I make sure that for at least the first 3 doses, my hubby is home should something happen! As you know, none of us are doctors, but we've worn a lot of shoes, so just know you and what you are feeling, are not alone! Nite-nite - sleep well!!

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • I totally understand your fears. I dealt with the pain for almost 5 years with it getting progressively worse. The last 6 months i tried everything to avoid the surgery. I could not use my left arm at all and was taking major pain pills around the clock, it was horrible. Even thought the my orthopedic surgeon said 5 years ago I would know when it was the right time for surgery, I still emotionally struggled. I went for 3 additional surgical opinions and each one recommended the same surgery although the post op care was vastly different. I was amazed at the differences. When you go for your consults you should let them know that the carotid surgery you had caused you to be down for 6 months. If you can get your friend who sells medical devise to NS to show your test results to them I would go for it. The more specialists look at your information the better. I had a 2 level ACDF on 12/9/2010. The surgery itself was no problem as I had the best 2-3 hours sleep I had in a long time. The recovery has had its ups and downs. If you want specifics let me know. Everyone is different as far a pain tolerance, and recovery. Generally when a person has no issues they leave the site quickly so you don't hear from them. People who have had issues stick around for support. Please think intellectually not emotionally, not that I should talk. I like most people are sorry that it took so long to finally have the surgery. Good luck and Keep us posted. :) As my friends say to me Keep your chin up (LOL)
  • Thanks french:
    Trying to keep chin up...
    It's the weird feelings driving me crazy. Something has progressed. I just dont know what. I am going to try anything I can do, Today is another bad day. Tried the neurontin last night slept good just woke up feeling hungover. and now the burn is back.
    Hypersensitivity allover upper body and arms. Dont want to take the gabaP again.
    Trying to get through weekend and to doctors this week.
    Knowing the ER basically said: here is this decadron ... dont come back... It's not an emergency" really has me feeling a bit lost.
    I am thankful for your posts and experience. I wish the NS had spent a little time telling me more about the surgery. I guess Ill have to ask some questions and find out what they will do now.
    I might try the gabaP later but I do not like the sleepiness and other weird symptoms, I have read it might take some getting used to but Wow.
    Get used to feeling Like Im half drunk and ready to just quit breathing gonna take some real getting used to...
    Thanks for the posts
  • I was reading over Brenda's post and some others.
    I am trying to get there, I am pretty good at dealing with pain. But the weird kinda pain this is has me near losing my mind.
    I am going to consult with Doc and NS too and see what they think.
    Every time I think: " Yes" I made up my mind...Im Ready"
    I get really scared and want to back out. The thoughts you all had posted. Exactly.
    You folks are tough, Just to have gone through it.Then to turn around and share to help someone else through. Well Im just impressed. Thank You.
    I've got a friend just had quadruple bypass surgery and he told me if they allowed him to think about it. He would have refused out of fear. Of course they never gave him a choice really. It was simply we are gonna cut you open or you will die.
    This is one of those nights, If they offered tonight Im quite sure Id just go and get it.
    Pretty safe Huh...Chances are nobody's gonna come into my house and take me to surgery.
    I am most frightened what is going on back there.
    I guess if I got a consult with a few other experts and they agreed it would ease my mind,
    Im repeating myself aren't I?
    Oh well better read some more trying to get up the nerve to take the gabaP
    Robert BTW I like your husband's name.:)
  • Howdy Robert!!

    I don't know so much if it's a matter of being tough, but finally getting to the point of knowing when surgery is finally needed. Similar to your friend, in '02' I collapsed at home (911 called) with what I found later to be a strangulating tumor! Basically it had gotten to the stage, that if they didn't remove it immediately, I would be dead by the end of the day! Not much to making that decision! Woke up tumor free, and with a hip to hip smile if you know what I mean - yep, unzipped me from hip to hip!

    It is looking like I will be going through at least 2 surgeries this year - revision plus up to 2 more levels in my neck, and the fusion L2/3/4..sigh. I am more concerned with the neck, so we'll see as they say.

    Robert, basically when we have things we can not control, we learn to work with or around it. Some of our "out of our control" things can be remedied or relieved with surgery or PT, meds etc. From what you've described to me, your wife is very supportive, and *that* is a biggie there. We are here for each other as well. Chat again soon.

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • Quick question. Are you taking Lyrica or Gabapentin? You said in your other thread that the doc prescribed Lyrica and in this thread you are referring to Neurontin (Gabapentin). Both drugs do the same basic thing, just one is much newer and is supposed to accomplish the same thing at a lower dose. Both come with some unique side effects and for your own safety it is important to know which one you are taking in case you wind up going to the ER again.

    Hope you get some relief soon.

  • I'm going to pretty much mimic Tamtam here - anterior surgery is far easier than posterior surgery when it comes to the cervical spine. It sounds scarier, but when you think about all the muscles and facia in the back of the next that need to be cut to get in there, well that's some pretty big healing.

    Additionally, the surgeon can reach the problem areas easier from the front (generally) than from the back. I also found that the anticipation was worse than the surgery and I had a 3-lvl ACDF. My arm problems had gotten so bad that I couldn't even lift a glass of water with my left arm and my right arm was tingling and numb 24/7. My surgeon and I felt there was no choice because any fall or accident could cause paralysis while there were bone spurs indenting the spinal cord.

    I also believe that many doctors won't describe the surgery in detail unless you ask. To them it's pretty routine and because they're not good teachers and many times not great communicators, you need to ask exactly what they're going to do for them to explain it to you.

    You can, of course, read articles and see videos on this site about an ACDF that will give you details instructions, and the videos are animated, so no gorry stuff to look at, just showing what they do during and ACDF.

    Like everyone said, making the decision for surgery is a very personal one and it's up to you whether to have it or not. But at least for me, my surgeon said it wasn't a matter of if I had surgery but when, it was that bad. He wouldn't even try conservative measures because I'd already been through PT, nothing was working and my symptoms were progressing rapidly.

    So, hang in there and do what you and your surgeon feels is best. Worth with your surgeon to determine your best course of action and go from there.

    Take care,
  • I totally agree with Cathie. From everyone I have spoke with and my surgeon anterior surgery is far easier than posterior surgery. You only want to go that route if necessary. THe scare will virtually disappear if you have a good surgeon. I am so pleased with the way my incision looks at 6 weeks. I was told that it could look ugly for 6 months. I do not even feel as if I need to keep it covered at this point. Surgery is a very difficult decision to make. I know that I am sorry that I postponed it for as long as I did. People told me I would feel that was and I told them that wouldn't be the case. So now I am eating my words. Again, surgery is a very personal decision and oly you and your spouse if you have one can make that decision with your surgeon. Good luck and keep up posted. This is a wonderful support group.n
  • Robert,

    The one thing about that medicine is it is not a medicine to take when you feel pain, but rather something you need to set on a schedule to take. The pain your describing is somewhat of the pain I get from the nerve issues, and that med is to help with nerve pain. The side effects of it as your describing can take sometime to get used, so you might need to work with it so your taking it on going to bed. Hopefully if you do surgery, you won't need the med for any longer than it takes you to get to surgery. Hope you were able to get some sleep last night and the side effects weren't to bad.
  • Hello All:

    Been running around a lot lately. Went to PCD
    and going to see PM tomorrow. Bad day today and have not been able to sit up for very long. I have the "creepy" flesh feeling and tingles going on today then some on again off again chest pain.

    I take the Gaba hagland they prescribed both But PC thought the gaba would be cheaper and work as well. I have been resistant to take it after the first night.
    I am going to try tonight.

    I just wanted to stop by and read some. Going to head to the sofa and try to lay down and see if it gets better.

    I hope you all have a good evening. I apologize Just not a good day.

  • Hello All:

    Been running around a lot lately. Went to PCD
    and going to see PM tomorrow. Bad day today and have not been able to sit up for very long. I have the "creepy" flesh feeling and tingles going on today then some on again off again chest pain.

    I take the Gaba hagland they prescribed both But PC thought the gaba would be cheaper and work as well. I have been resistant to take it after the first night.
    I am going to try tonight.

    I just wanted to stop by and read some. Going to head to the sofa and try to lay down and see if it gets better.

    I hope you all have a good evening. I apologize Just not a good day.

  • Hi There :) First let me tell you I have had 3 spine operations! Yes I was terrified as you are now. Spine surgeries have came along way so try to relax if you decide to have surgery. Many people who come to Spine-Health for help have also have had at least 1 spine operation and are improving their quality of life. Here is the question you need to ask your self. "Can you live in the pain your in right now"? If there is a chance of being paralyzed can you accept that ? It sounds like you NS was correct and you should consider what he has suggested. Doctors will not suggest a fusion if its not necessary.

    I had a cervical fusion from C3 to C5 4 years ago and before that all the symptoms you have described were the same as mine. I didn't want to live like that so I braved the surgery and once I woke up and the healing process started I was very happy with the results. The arm burning means something is touching one of your nerves in your neck. There are 2 drugs I know of that relax the nerves in the spine. It's not a cure but they can give you some relief until you fix the root of the problem. You could also buy a soft cervical collar. I did post pone my surgery by wearing a collar but eventually it stopped working as well. Once all my efforts were exhausted then I agreed to surgery. :)
    2005-ACDF with Corpectomy at C3-C-5.
    2006-L4-L5 diskectomy.
    2009-Cervical laminectomy at C3.
    Steroid injections series x 4.
  • Well sorry about last night I was having really rough time.Today not too much better.
    I guess the choice has been made for me.

    PM visit today, He said there was nothing more he could do and he was sending me back to NS.
    In a way I am kinda relieved. I really cannot live the way I feel know and think about death a lot.
    Might as well have a shot of getting better.

    The experience you have all posted has been helpful, I am still frightened a bit, But also out of options.

    I have called my PC and getting her to schedule a new MRI I figure if the last one was that bad, This one ought to have me on the fast track, ACDF.

    I want to talk to the NS about recovery. I guess I'll be fairly quickly. Thank you all for helping me not feel so alone.
    I am generally a pretty positive guy ( you can tell from my upbeat posts) :) But I really cannot take the misery any longer. I hope there is some relief in this.

    Still scared but at least moving towards something soon.

  • Howdy Robert,

    Sorry to hear you're hurting more. Like I mentioned earlier, *you* will know internally when "enough is enough" as they say. Hopefully a new MRI won't reveal more bad than before, and too give you the final answers you need from the medical professionals as to whether surgery is now fully on the table.

    Try not to stress out too much. We all do though! You might want to right down all your questions to ask the surgeon before you go. Many of us go into "brain fade" when we meet up, and forget, then as we are going back to our cars, blamoo - all the questions we forgot to ask! Another thing that might help? Bring your wife with you. I do that with my hubby, as he is great with asking questions that I miss, and too he hears everything said!

    Please keep us posted. *HUGZ*

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • Robert, This is a place that you can say exactly how you feel without feeling guilty or having to apologize. Most of us have been where you are and actually understand how and what you feel both physically and emotionally. Hopefully the new MRI won't show much more damage than the one before. I had a 2 level ACDF on 12/9/2010. There are great threads as to what you should have in the house prior to surgery. My favorites bendy straws, stool softener and soft foods. Good luck and keep up posted. Remember you never have to apologize.
  • Robert - I am also new to the site but have suffered with herniated discs at C-5,6 & 7 & degenerative disc disease & arthritis with severe pain radiating down my right arm for the last 17 years. Not to say I am an expert in this area but I have been to over 40+ doctors & physical therapy & other types of places looking for help but never did surgery on my neck. My doctor said to just learn to live with it. So, I researched myself and found that neurontin was really the answer along with finding a good neurologist for me. I found someone who knew about medication and learned that you can start at a low dose of a medication and then slowly add to it over time. That it key to controlling all of your pain. Your choice may be surgery down the road, so until you feel comfortable with doing it, work with your dr. with a bottle that has 100 mg of the pills and then slowly build up to what you need throughout the day to take, until you level off and feel no pain. Neurontin tricks your brain so you feel no pain. I have been taking it for years. I was on a dose at one time close to 4,000. Now I only take 400 a day. This in combination with a pain killer like percocet, 5 or 10 mg (or more) or oxycodone together should be discussed with your dr. to give it a try. For sleep, my neurologist gave me a pill called limbatrol which works great. Remember, the pills should be taken throughout the day till about mid afternoon. Then about 7:30 or so, take the limbatrol for going to sleep by 11 which is when it kicks in. You may also wish to discuss going to physical therapy to learn neck exercises and try to sleep without a pillow. Also watch your posture and when you answer a phone, don't tilt your neck. Massages also may help you.
  • MetalneckMetalneck Island of Misfit toysPosts: 1,364
    I have had both a failed 2 level anterior and a revision 3 level anterior - posteror - 2 level corpectomy - vertebrectomy 2 posteror rods, cage, 12 screws, 8 days in the hospital (3 in ICU) for the last revision.

    My simple statement is when all the PT, Meds, meds combo's, ER visits, consults, heating pads, etc, etc.. do little to nothing to relieve the pain - you may get to the point that as scared or objectionable you maybe to the concept - idea of invasive cervical surgery (anterior - posterior - both - autograft - allograft) you will plead for the surgery. Only you will know when you have reached that point .... I have reached that point twice in the past 4 years.

    I now have developed a new area of stenosis above my construct and am dealing with again all the tricks of pain management. The potential of a 6th surgery within the next year or two is very possible. When all the other treatment modalites fail and the quality of life goes further down the craper, I will be the first to advocate proceeding with yet another procedure.

    Lord help us all,

    Warmest regards,


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