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lavenderthistlellavenderthistle Posts: 23
edited 06/11/2012 - 8:49 AM in Neck Pain: Cervical
hmm spondylosis/stenosis they almost sound cute! Like Laverne and Shirley.

Meeting with a pain medicine dr on the 13th. I am requesting a copy of my mri results at the meeting. I'm not sure what to expect or ask. The progression so far has been PA, now Pain med, then if need be the surgeon. I really would like to know the probable outcomes before I commit to a line of treatment. I'm already midway through the month of therapy. Therapists don't seem to like it when your pain is up and down or when you have reactions they don't plan...(ok really ticked off today but not going to dwell anymore) I'm not surgery happy but if mine is ultimately going to lead to surgery I'd rather get it out of the way at 40 instead of waiting for 60.

What are your thoughts and how do I convey this to the doctors? I know doctors don't like to be questioned. My husband is going with me because I cave like a wet noodle. I won't ask about percentages and prognosis. I would meekly nod (if I could) and say 'yes you know best', then kick myself later.

What do say and do? What to ask? Should I always seek a second opinion?

Happy New year!



  • Maybe it's just too early in the morning and I haven't had enough coffee, but I'm not really sure what you're asking. I mean, the questions are clear, but are you concerned about what to ask a new PM? Do you want to cut to the chase, so to speak, and say if I have to have surgery, tell me now so I can get it over with?

    I'm just not sure where your dilemma lies...sorry...so if you could clear it up a bit, maybe we can help you out.

    Like I said, though, it could just be me.

  • the better off you are. Just going from my husband's experience. He did not have any surgery before the age of sixty-five. He probably could have had it long before then but his family doctor was strongly against any form of back surgery unless absolutely necessary. Finally, at 65 and in great pain and losing mobility quickly, the doctor agreed to look into lumbar surgeons. We found ours before he found one who would agree to operate and hubby's recovery has been wonderful. Having read and learned a lot from this forum, I am wondering if his fairly seamless recovery and loss of all pain is due to the fact he had no other surgeries and was in reasonably good shape despite his increasing immobility.
  • Well, in a way, I kind of agree with beaver (we are fellow canadians after all, lol) in the idea of delaying surgery. But it really depends on if the conservative methods of treating your pain are working or not. If it isn't working, and your quality of life is extremely low because you're unable to do almost anything because the pain is that bad, then the surgeon could suggest surgery to help. You can always seek a 2nd, or however many opinions as you wish, as long as you're not just searching for the answer you want to hear instead of what the doctors are telling you. But they will always want you to go through the list of non-invasive treatments first, such as physio, accupuncture, injections, etc, and if those don't work, then surgery.

    I'm not sure what you're other issues are aside from stenosis, but as I've recently found out, it's taken less than two years for my bone spurs to grow back, plus others. Unless the pain is too much to bear, and is severe everyday, I personally would delay the idea of surgery, as it's not a permanent fix to that particular issue. If you do have other issues, and are in extreme pain every day, then maybe surgery is what you want to do. You have to go through the pros and cons of having the surgery, and those of not having it. That could be your starting point with the doctor, ask what would happen if you had surgery, and what would happen if you don't. Good luck!!
    APROUD CANADIANveteranButNOTa doctor, my thoughts are my own
  • Hello LavenderThistle

    I have started to have problems with my cervical spine very recently, since Oct 2010.
    From that time till now, I have been collecting opinions and impressions from a good number of doctors, therapists and academic-medical researches to try to better understand what are the treatments available and what I should expect ahead.
    What I did understand so far is that I will not hear from anybody what my future will really (100%) be, taking any direction of treatment. I think, in fact, no one really can foresee it. There is no 100% in this area.
    What, however, seems to be a general opinion - so far - is that only when the right moment arrives surgery will be recommended (and it does not depend on your age). At this time, I believe this moment is when symptoms come to a point where alternative therapies are "to soft" to deal with the issue.
    I think what I can do now is to try to gather information more and more, for now and for the future, get the good advises from this forum (thank you all), ask as many questions are required to doctors and therapists.

    At this time, I still think that although doctors and therapists are the ones that will hopefully solve my problem, the decision of what to finally do with my neck will almost always be with me. I hope at least.
    That is why I recommend you to make as many questions as you want and consult as many doctors you are able to and\or you feel needed to answer your concerns.
    Information, at least for me, has brought me more relief than I never expected.
    Finally, I believe - there is always the best\more experienced doctors and the best practices for each case. I see as part of my "homework" to be part of this search to find them.

    Hope to have helped.

    PS. I am 51.
  • Wow...my post was really cryptic huh? Things just weren't adding up with the last doctor's office. I hadn't been allowed to meet with a doctor at that point. After that insane post, I took matters into my own hands. I got a copy of my MRI after therapy went horribly awry.

    I had
    1.)herniations 2-7 (yes all of them)
    a few discs went in 2 directions pressing on peripheral nerves in addition to central canal

    2.) 3 old fractures (?!?! news to me)
    3.) retrolisthesis
    4.) ligament hypertrophy
    5.) Stenosis (central canal and foraminal)
    6.) Spondylosis

    there was more, but I can't recall right now. I was put in a Vista hard collar for a month to see if the small amount of traction from that would be enough for a couple of discs to shrink. Vista has 6 settings...I got number 6, meaning a headache for a month as it stretched my neck to giraffe lengths. I was overdosed on Gabapentin, given normal amounts flexeril & citalopram and given 3800mg of Motrin to try to halt the cord compression (no dice...still ended up with partial paralysis...no big deal though) After the month collared I was reassessed...postitive for Babinski, Hoffmann's, impaired tandem walking, hypersensitivity, hyper reflexia, surgery was deemed necessary to avoid (rapidly approaching) paralysis.

    I hope that clears up my sketchiness in this thread...I was at my wit's end
  • Wow lavendar, that is a lot to deal with!! So what do the doctors say? Are they suggesting surgery? If you're dealing with paralysis, myself, if they say there is a good chance that would go away with surgery, I wouldn't give it a second thought, but that's just me. What is Babinski and Hoffman's? Are they treatable, or is it just pain management from here on out?
    Hopefully we get to see you again in chat soon! Take care;
    APROUD CANADIANveteranButNOTa doctor, my thoughts are my own
  • So when is the surgery or do you know yet? Did they say if the paralysis is permanent or will it get better after the surgery? My surgery was delayed much too long and now i have trouble with signals reaching my legs. I can still walk but i have a lot of leg pain and walking problems along with balance issues. Good luck to you and i hope the best possible outcome for you.
  • I left out that! I had fusion a month ago. All the delay plus a small bleed left me with central cord syndrome. The surgeon says it should eventually clear up. It's an incomplete spinal cord injury... so it's just a matter of the nerves healing or not. He said about a year for them to heal or stay the same.
    Hoffman and Bakinski are myelopathy indicators. Had it been checked when i went to the spine center, things may have been different. But that's life.
    Still collared 1 month post surgery but i can alternate soft/hard. I'm a slow healer.
  • Sounds like you had your hands full. Good to see your on the other side of surgery now. AS far as the myelopathy goes, I hope they told you the damage is done and surgery was done to stop anymore damage from occurring. There are a few of floating around with myelopathy, and the symptoms are not fun at all. There are some old threads in "conditions not covered by other topics", that explains a lot more about myelopathy. Being in the brace that long out doesn't alarm me at all. I spent 3 months in one on two different occasions. I actually liked the brace, as all the things I had been going through prior to surgery, gave my neck muscles some much needed rest. Just be sure to follow all the doctors orders and hopefully they will set you up with some therapy when your further along to strengthen some of those muscles.
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  • Yes, he did tell me some of it is permanent. The problem was the mild cord injury. I also had some whiplash post surgery..(don't ask) So, I have a year to see what clears and what doesn't as far as the cord injury. I am learning something new everyday. I am also looking ahead and trying to take care of the other 3 discs.

    I haven't posted much because I've had a lot to deal with and not really known what to say. I did not have a negative experience at all with the fusion. I am so unbelievably lucky and grateful that things worked out the way they did. I would still have the surgery again, no regrets there. My only regret is a bout of stupidity during healing, but spilled milk...it's all good.

    Finally released from collar :) yay!!

  • I am very interested to follow your story. It sounds like you are feeling quite a bit better now, after your surgery and into the recovery period.

    What symptoms do you still have?
    I have been told that I have some signs of myelopathy - hyper reflexes. The registrar I saw didn't do all the tests, so I am fed up about that.
    At the moment, I am waiting to hear back from the consultant after sending him a letter.
    Other than that, I have an appointment to see him or his registrar in October, after having a complete spine MRI scan and flexion and extension x-rays. He wanted to have me referred to Pain Management, but I am still waiting for that (In the UK - say no more!).

    I am concerned that waiting may leave me with some permanent nerve or cord damage. How long did you have obvious neck problems?

    Hoping that you are feeling better and better each week. :-)

  • im happy to hear you had a positve experience with your surgery, must be a relief for you

    what level/s did you have done?, also, do you no if you had ostephytes at those levels, though i realize it was disc causing the stenosis for you as you said.

    how did you go with the tandem walking test? did you manage it reasonbly well or where you having difficulty with it?

    like jellyhall, im interested to no, as it helps others who are having similiar issues,and look to the forums for patients experiences

    gosh you had those 2 old fractures that were picked up on scan, weired, where they hairline ones?

    happy for you, coming along so well with your recovery, how is your walking?

    take care and keep healing well

  • I actually found out it was 3 compression fractures, they were stable and healed. Really a huge shock. They were causing the vertebral column to collapse a bit.

    I had 5/6/7 fused. I did have osteophytes in the central and foraminal areas on those and there were also spurs off 4 but it was not necessary to fuse 4, just clean it. Some of the stenosis was from the discs and some was from the spurs.

    I didn't do well at all tandem walking pre surgery, post surgery I am great for a cord injury. Meaning now I stumble more and have weakness, but both legs work.

    I had neck problems from a sofa accident 16 years ago...all discs and 3 compression fractures. I didn't start having problems until this past October. Therapy did make things worse for me. Spinal cord was compressed at least 2 years, in retrospect. I was diagnosed with myelopathy and hyperreflexia about 2 years ago.

    Symptoms...wow, a lot. Arms, legs, (weakness, fatigue, loss of sensation, temp, fine motor skills are affected) I have "other issues" really this list goes on. I'm still in the learning curve with the injury. I don't want to bore or scare anyone so if you need this info, just message me. I don't mind sharing I just don't want to be the downer on the board.

  • As for my experience with the doctors it seems before they will recommend surgery, you usually have to jump through all their hoops first. They want to make sure you have tried all avenues to relieve your pain first because surgery is when it is the only option you have left. I have been going through back pain for almost 4 years and have been on pain medication the whole time. I went through physical therapy twice, epidural injections, NSAIDs , Tens Unit etc.. Now that my pain has steadily gotten worse and my leg is now being affected when it is buckling all the time and I am limping, I am finally being recommended for surgery.

    Even after all of this waiting and dealing with the pain I am still going to get a second opinion. I believe you should always get a second opinion when a decision to have surgery is made.

    The only time I was recommended for surgery first thing was when I had a severe neck herniation that was pinching off my spinal cord on both sides.

    I understand what you are saying about them getting upset when they do not like your outcome. The second time I had physical Therapy the Therapist was getting mad at me because nothing she tried worked. In fact everything she was suggesting made my pain worse. She finally told me in no uncertain terms that she could do nothing for me and that I would need surgery. She was very cold and rude with me which was ridiculous, Didn't she think I wanted to fix this.

    Anyway I hope you will find some relief and will not have to have surgery. It is a long and hard recovery. Keep us posted!!
  • thankyou so much for sharing, it really does help others and also be cathartic for yourself

    dont feel worried about being a downer on hear, we all at times come on here and vent, because the people here get it, often family and friends dont understand

    i also respect you not wanting to scare anyone, but i think if its factual information, that the person has experienced

    that is fine

    obviously post what you are comfortable with

    so pleases your compression fractures healed well, i can very well understand in your casr(and mine) how pre-surgery physio made it worse

    but after surgery, differnt matter, when you get the go ahead from dr, physio will be needed to regain your muscle strengh

    so happy to hear your walking is improving , all takes a long time
    i wish you much improvement,

  • Well...I just re-read some  of my old posts and looking back, I still have no regrets as far as the surgery goes.  I can honestly say that though I do still have pain, I have function.  My surgery was a total success for at that matters to me.  I know some people care more about getting rid of the pain initially, but as things progress, weighing it all out.  I will take function over pain any day of the week!  

    I'm still doing well.  I have had many ups and downs re-learning how things work.  I had to go through some tough learning curves. One of the biggest was realizing the signals from my brain were not getting to my body parts as soon as they should, or in the correct order.  Once I accepted this, and realized that in certain situations (large crowds, drinking outside the home, in crowded parking lots, large cities, very long periods) it really was safer for me and everyone else to use a wheelchair, healing started progressing faster and more predictably.  I'd fallen down the stairs a few times due to body parts not reacting correctly and injured an already weakened (by knee and ankle issues) leg.  Recognizing and accepting this was huge.  I felt like a fraud because I could walk, but not as well as I should.  I could react, but not predictably as I could.  I had to give myself time to start learning to reprocess all those signals coming down the line.  Taking necessary breaks, giving my body time to adapt to all the information, moving slowly and deliberately to reacquaint myself with my body and response times, were all necessary paths to healing.  

    I am now walking really well, I've begun trying out heels one or two days per week.  I'm working outside the home.  I still have some issues processing visual cues in time to move out of the way, I still get fasciculations and some spasms but not like I did have.  After a tiring day I'm more likely to have those fasciculations (muscle twitches), spasms, and some weakness.  Most days are absolutely unremarkable.  I am much more attuned to going slowly now and reading the signs of pending issues.  Each person has to learn what their signs are and how to handle them.  For me, it's an overall heavy feeling.  When my body just starts to feel heavy and doing anything seems like a real feat, then I need to rest.  I need to let my body and mind catch up.  

    If you are new in this journey, it really is possible to have a successful outcome with fusion surgery, it won't likely be pain free, but it can happen to be pain free for many.  There really is hope, there really is help from doctors.  Most importantly you are NOT alone in any of your symptoms.  From the weird bladder, bowel and sex issues, to extreme lethargy, clumsiness and searing nerve pain....not one of you is ever alone.  

  • Lavenderthiistle.. I just read your post thru. I am glad you are doing so much better. I am 5 months out from a ACDF 6/7 severe cord compression, sometimes when I walk I have to put my foot ourpt to make sure the ground is there. I still have cracks and noises. When my muscles are tight it seems I get zingers in my feet. I felt after my surgery I could hold my bladder better and didn't have to wear a pad anymore. I definitely am better than I was 1 month ago. I had no pain before just numbness all over that came then was gone all day long. Most is gone now just some on my shoulders and back now. I pray we continue i.e. healing and can protect the rest of our discs,
  • I hope your healing is going well LVN.  I don't get here as often as I should.  I'm always glad when people come out of surgery better than when they went in.  :) 

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