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Neck and head pain

AnonymousUserAAnonymousUser Posts: 49,899
edited 06/11/2012 - 8:22 AM in Back Surgery and Neck Surgery
My story sounds very similar to most everyone I have read here so, I will make my story/questions as short as possible.

Summary of my surgeries:

Pain began in 2004-numerous Dr's visits(Dentist, Optometrist, Primary care, Naturopath, food allergist etc. finally Neurologist and then recent Orthopedic)
Pain began with headaches, pain behind my ears, top of head pain and base of head pressure/pain. At first convinced was TMJ so went to dentist, went through splint therapy with little relief that didn't last. Ultimately, after CT scan Neuro surgeon stated bulging disk, degenetrative disk disease had anterior cervical fusion of c6-7 this was in 2006. Following this surgery learned had a leaky dura (sp?) the level 10 headaches were gone! thankfully!! but, still a lot of pain that never went away so, in May of this year/2008 more test done by new Dr/Orthopedic and found needed level 4-6 fused. Ortho took previous larger bracket out and placed smaller with the fused 4-6. Now, almost 4 months after surgery and still back of head (I think it is Occipatal area of head)so where top of neck and base of head meet I continue to have pressure, pinching, numbness that radiates all over my head and I think this is causing pain in my jaw/TMJ joints, behind my eyes, ear pain and all of this leads to waves of dizziness. I have just recently had CT scan and my Dr states every thing is healing nicely but, I have "puddles of inflammation" to help with inflammation I have had one set of steroid injections that helped tremendously! for a day and now everything is creeping back, my Dr has scheduled another injection, from my understanding you can have a max of three injections. The initial injection has helped but, I am still taking something for pain every couple of hours. I apologize this has gotten pretty lengthy but, I am praying that others have similar symptoms and what are you doing for relief and does this sound like it is inflammation and I am just not giving it enough time to heal. My questions are: Do the symptoms I describe sound "normal"
Typical time frame any one has heard begin to see improvement?
What meds have helped? (meds where you can still function day to day and non-addictive) took Ultram works great but very addictive! and began making me even more dizzy.
Thank you to anyone that will take the time to read this and provide feedback. I believe that God has a plan for all of us and will never leave us so, we have to pull together and support each other. I sincerely believe if we all pray (when one or more are joined together I think the Bible states..) we can bring a lot of comfort and healing to each other. We are still alive! so we are winning this battle
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Comments

  • I only had fusion to C4-5 so your surgery was much more extensive then mine. I had surgery in April 08 and it took awhile for the headaches and pinching to go away. I can realate to the headache. A headache that last for months can make you nuts. I really watch how much I read as this is what brings it on for me. Used to pick up a good book and not put it down until I was done. Watch looking up and down repeatedly.

    PT has helped me the most. I also started on Cymbalta for nerve pain. Seemed to help but I just went off of it and I am still pain free. I do strength building exercises every day and this has help me the most.
  • Hi and thanks much for the response! it is unbelievably helpful to hear when someone has some form of success =D>

    You mention Cymbalta; I think I was placed on that for a few days but made me very sleepy. I have heard others on this and seems to be the medication that helps the most. Did it make you sleepy? I may try it again... maybe lower dose? thanks again!
  • Glad you are here on the forum. It's a great place for info and support. I have learned so much here! You have been thru so much, and I admire your strength. God bless--Mazy (I am also in Colorado.)
  • Hi thanks for the response! I too have found this site very informative and helpful/encouraging. I think we all have our strengths and areas we are weak that is when we should be reaching out to others. Take care and God Bless.
  • I had the EXACT same symptoms as yours for 17 years due to at least a herniated disc at C5-C6. By and large, this was tolerable and I lived a good quality of life. However, 2.5 years ago I had a fusion that massively escalated these symptoms and, for the first time in my life, even caused general pain up and down the spine that I never had before surgery.

    In many ways, the surgery was a dismal failure and made things catastrophically worse. Nearly every moment was a living nightmare for the first 3 months especially, despite a "solid union" and "perfect post operative spine". I found myself hoping and praying that I could have a clean death, as suicide is something I philosophically am against.

    What made is worse is that my doctors shrugged their shoulders and washed their hands of me, stating that I would live a life of pain and should consider opiates and so. They also changed the goal posts on me, saying that the surgery was to prevent paralysis and more damage as opposed to being the pain "silver bullet" they promised. I will never in words adequately be able to describe the pain, horror, and sense of betrayal I had.

    Well, fast forward to now. I am "cured". I have lingering symptoms of what you described, but to an innocuous degree. It is just background noise. Whereas I once wept and railed at thought of being debilitated for life, I now regularly run, play soccer, lift weights, and pursue my career ambitions. I even can go days without real pain. Suffice to say, I am once again a proud and motivated husband and father...but one who never takes anything for granted anymore.

    Why did I heal and get to this point? Nobody knows. Not my doctors. Not me. But, I can tell what I did along the way. Here is a synopsis:

    2 Weeks after Surgery

    I try some opiates and have serious hallucinations. They didn't mask the pain in so much as they stupefied me. I vow never to take them again, as even in these weeks the dosages were increased significantly and prescriptions changed.

    I am in suicidal pain. Being in that collar and immobilized made it even worse.

    8 Weeks after Surgery

    I no longer have to wear the collar and am back at work. But, every movement, especially walking with hard shoes or with every stroke of a finger on a keyboard, the head symptoms you describe are amplified...like a booming echo!

    I start to do light PT under medical supervision. It is very light and basic, often causing more pain.

    3 months after Surgery

    Doctors proclaim solid union and no swelling or inflammation. They encourage me to play sports and let my body tell me what to do and not to do. Great advice, eh?

    ;)

    Well, I did try to run and play soccer. I also slightly intensified the medically supervised PT, augmenting it with light swimming. I start to notice a pattern: Exercise caused a brief interlude between pain...only to return in a day or two much, much worse.

    Regretfully, I had to scale back my running and soccer ambitions.

    6 months after Surgery

    Life is still a nightmare, but I earn a living and continue PT. I also start again playing soccer and running. I notice that the cycling between interludes of relief and pain increase. I can go longer and longer without pain.

    1 Year after Surgery

    I start seeing a physiatrist at UCSF, where the neurosurgeons offer nothing but pain management and regrets. I get a gifted and compassionate lady doctor who agrees that I was misled and that she too doesn't know what is exactly going on. She hypothesizes that my nerves were both traumatized during surgery and still needed to heal after 17 years of serious impingement.

    She suggests gabapentin and amitryptolene, which are not opiates. I take them for 3 months. For the 1st time since surgery, I actually had some nights of good sleep. Running and soccer could be done more forcefully and there were even some "magical" days free from most pain.

    About this time, I also meet Troy Dayak, a professional soccer player who had my same surgery. He failed to get a solid union for well over a year. He committed himself to fighting through pain and exercising and, one day, he was tested and found to be fused. He then played 6 more seasons in Major League Soccer for the San Jose Earthquakes.

    This man INSPIRED me. I more than ever vowed to stay true to my athletic passions and try to break through the pain as well.

    2 Years after Surgery

    I was increasingly running, playing soccer, and following the weight program developed by my PT. But, sometime last September, I really went all out and played soccer for 2 hours, taking some hard shoulder tackles. I felt PERFECT for 2 days...until I drank red wine and triggered a MASSIVE cycle of pain reminiscent of my initial post operative pain.

    I was devastated to have fallen back so badly. I also thought I messed up my spine even worse. Like I said, I had general pain up and down the spinal column that never was there before surgery. After this, I took a 3 month break and once again started light PT.

    I also realized: "Listen Mate you dumb shit! DO NOT DRINK ALCOHOL". I cried, as I love my Napa Valley red wine collection more than sex. I am not kidding.

    3 Months Ago

    Pain is minimal. I can run and play soccer at will, for 2 hours at a pop. I even can now lift fairly heavy objects without inducing pain.

    Don't get me wrong, as I have the head symptoms you describe, only in light degree. I don't think they will ever go away, but if they do, well, that is a bonus.

    ;)

    Again, I can't say exactly why I healed. But, I tried to lay out for you what I did and didn't do. Maybe there was a correlation between this and my healing? Maybe I got lucky? And, who knows how long it will last, although I hope it is a lifetime?

    I'm with you. I had your same symptoms. I wish you all the best. At the very least, know that these things can be overcome, even if it takes months and years.

    God bless.

    Cheers, Mate
  • Thank you, thank you, thank you! For detailing what you have gone through. I was becoming very fearful that my symptoms were not all "normal" From your experiences noted I have to say I admire your courage and strength not to settle and give up. It sounds like you remain very active and with a positive attitude. I would absolutely never wish this pain on anyone but, know that your experience has provided me much needed encouragement. I am in my early forties and love life and want to continue enjoying ice-skating, working out, etc. When I am out of pain think how much more I will enjoy the things that I used to take for granted!! (notice I say when I get better see things are already looking up haha) O:) God Bless.. and I know HE does Bless us each and every day.
  • thanks for taking the time to tell your experiences,it was a interesting read
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