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Thread: Neck problems above fusion

  1. #1
    Join Date
    May 2008
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    reno,nevada
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    3,547

    Neck problems above fusion

    I think its time for a new thread about by neck and arm....

    I have something going on because I have neck pain looking up. I cannot look up at all. Left and right is ok. My left arm feels like someone punched it really hard, my hand is numb and I am having fasciculations in my arm and its getting weak.

    I do have that PALS worry happening in the background since my father had ALS. Thatís familial inheritance of the disease....but I really think that my neck is the issue since my surgeon mentioned that my C5-6 is getting roasted. No scoliosis in the neck, just the usual age and degeneration issues you have to deal with getting older....fun stuff.

    Chiropractic has helped some, but I guess I will give it another week.

    Iím worried about doing shots in my neck......Nice to know that my neck situation will be dictated by an insurance company. At least the markets are rocking right now....Iím such an expensive date.

    If any of you can find a link or suggestions for a cervical traction device thatís the cats meow, Iím ready to spend money on devices. Typing is hard with numb fingers!

    I would like to thank all you guys for your concern.....

    Thx
    Ed
    49 yr old male, now 58, the new 53...
    Pre surgery curves C12,T70,L70
    ALIF/PLIF T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  2. #2
    Join Date
    Jun 2011
    Location
    Southern CA
    Posts
    2,224
    Ed,

    I hope that you get some relief.

    I have the same pain problem but for different reasons
    Melissa

    Fused from C2 - sacrum 7/2011

    December 8, 2014 - Another Broken Rod Surgery

  3. #3
    Join Date
    Apr 2012
    Location
    San Jose, CA
    Posts
    570
    I don't have any suggestions, but just wanted to say how sorry I am to hear about your neck problems. Hope other people would be able to recommend some device to alleviate your pain.
    I am stronger than scoliosis, and won't let it rule my life!
    45 years old - diagnosed at age 7
    A/P surgery on March 5/7, 2013 - UCSF

  4. #4
    Join Date
    May 2010
    Location
    Indianapolis area
    Posts
    966
    Oh, I hope it's not ALS-related. Most likely with a long fusion, it's putting stress on the joints above and below the fusion. I don't know much about necks. Can they do a decompression without fusion? Sounds like a nerve is clearly being pinched. Have you tried water therapy? Didn't I read somewhere that it can help alleviate pressure on the nerves? What about NSAIDs? Also omega 3s help reduce inflammation. Sounds like you need to go see a neck specialist. I hope you find some relief, and soon! I'm sure the stress of losing your mother is putting added pressure on your neck, as well.

    Evelyn
    age 44
    80* thoracolumbar; 40* thoracic
    Reduced to ~16* thoracolumbar; ~0* thoracic
    Surgery 3/14/12 with Dr. Lenke, T4 to S1 with pelvic fixation
    Not "confused" anymore, but don't know how to change my username.

  5. #5
    Join Date
    Jul 2012
    Location
    Warsaw, MO
    Posts
    373
    Ed,
    Since your spine is fully fused what about trying an inversion table? I know I have different levels of fusion, but my neck often gives me trouble (probably from the scoliosis) but the inversion table helps. I find it funny that it helps with my neck, but not my back. They are not too expensive, but worth the try. Also, bio freeze helps me loosen things enough to go get a neck massage. Maybe some deep tissue therapy will help.

    I too will pray it is not ALS. That is a tough one to tackle.

    Tamena
    Diagnosed at age 12 with a double major curve

    Braced till age 15

    SSBOB T12-L2 Anterior age 34. (October 22,2012) Dr. Robert Gaines Jr. ( Columbia, MO)

    Revision Surgery T2-Sacrum with Pelvic Fixation Prosterior age 35 (November 13,2013) Dr. Michael Kelly (St. Louis, MO)

    Revision Surgery L4/L5 due to BMP Complication age 36 (November 20,2014) Dr. Michael Kelly (St. Louis, Mo)

    Revision Surgery due to broken rod scheduled for October 19, 2016 with Dr. Michael Kelly (St. Louis, MO)

  6. #6
    Join Date
    Jan 2008
    Location
    NC
    Posts
    8,903
    Ed I am very sorry to hear this.

    As you know, Dr. Hey develops engineering solutions for orthopedic problems. Maybe you can consult with him on some technique me might have to address this. I think he does some sort of u-bar thing with upper back and maybe neck.

    I'll watch the journals for this issue.

    Hang in there.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  7. #7
    Join Date
    Jul 2011
    Location
    Nashville, TN
    Posts
    161
    Ed,

    First, please accept my sympathy regarding your Mom's passing. I have not been on the board much lately and just now noticed this. I hope you are feeling somewhat better with a little time. I realize loss of a parent is something you never "overcome". Just another phase of life.

    Decompression is a possibility to talk over with the surgeon maybe? You mentioned PALS...I don't know what that is. Sorry for my ignorance. I do hope your neck issues are not related to ALS. Please keep us informed.

    Pam
    Pam, age 49
    Thoracolumbar curves 80 and 40 corrected to 20 degrees
    April 20, 2012 surgery with Dr. Lenke
    T-3 to sacrum

  8. #8
    Join Date
    Mar 2010
    Posts
    2,755
    Ed, have you had an MRI or a CT of your neck? A bulging C6 will cause the symptoms you are having. It goes through the shoulder down the side of your arm all the way down to the numb fingers. My orthopedic doc for my shoulder told me this as I have the same symptoms and a bulging C6. My numbness isn't constant, which makes me think you need to get a neuro consult ASAP for your neck. Are all of your fingers numb or just the first three or last two? The last two seem to be related to pain down the back of the arm and under the forearm. I'm not sure what the symptoms of neck onset ALS are. You are more informed of that. It really sounds more like a messed up disc to me. I hope you get it figured out soon! Try not to freak out until you know. My ortho said my neck was a mess (all the scoli people say it's fine - HA! So much for being truthful). You are a little older than me, so yes, age related degeneration is most likely your problem. Also, is there any way that your neck could be taking a harder hit because of the fusion? Are you going back to see Dr. Menmuir? I recall you told me he specializes in necks.

    Take care and feel better.
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

  9. #9
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    May 2008
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    reno,nevada
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    Rohrer

    Last year (Jan 2012) I saw my surgeon and had x-rays done of my neck. I donít have those copies....

    Dr M pointed out that my C5-6 was going to be an issue and if need be he would do shots....I will be as hesitant as possible on CTís due to radiation and would rather do an MRI.....He does have extensive cervical training from TCSC

    I will give it another week and see what happens with the Chiro and ultrasound.....things are improving very slowly.....Iím trying to dodge this bullet....(temporarily).

    Did you know that you can suffer from frostbite from an ice pack? I had no idea....

    I am taking 3 yr old Celebrex at night only. They are expired, and seem to be only half the strength. Hmmm.....

    I now remember struggling with loading my bags into the overhead bin on one flight....Next time, I will fly in a wheelchair. Dr Risser did this 40 years ago and showed up at a scoliosis meeting in the chair and everyone asked ďwhat happened?Ē He then stood up, smiled and said that it was so much easier to travel in this manner. (smart guy)

    Its my left hand that is numb. All the fingers also. The twitching has stopped, but that doesnít mean all that much....fasciculations are common with ALS and it starts as ďLimb onsetĒ or ďBulbarĒ which targets the throat, which is nasty. With limb onset, it starts with one leg or arm, transfers to the other limb, then up or down. My chances of getting it are higher, but it is a rare disease. 1: 100,000

    The twitching makes me very nervous....Michael J Fox stated that his Parkinsonís started with a left pinky twitch back in 1984.

    Sharon, If you find anything that Dr Hey has, Iím interested. We are all interested....

    I had inversion boots in 1982...that was a while ago. I fell off the bar back then and hit my head with 150# plus of pressure and am probably paying for that right now.

    Iím feeling a little better today.

    Ed
    49 yr old male, now 58, the new 53...
    Pre surgery curves C12,T70,L70
    ALIF/PLIF T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  10. #10
    Join Date
    Jul 2012
    Location
    Warsaw, MO
    Posts
    373
    Oh Ed! They have come a long way with the inversion table. We no longer hang in boots from a bar, lol! Glad things are slowly getting better though. God knows we all need Titaniumed to be 100% because we depend on him way too much! (smile, wink, wink)

    Tamena
    Diagnosed at age 12 with a double major curve

    Braced till age 15

    SSBOB T12-L2 Anterior age 34. (October 22,2012) Dr. Robert Gaines Jr. ( Columbia, MO)

    Revision Surgery T2-Sacrum with Pelvic Fixation Prosterior age 35 (November 13,2013) Dr. Michael Kelly (St. Louis, MO)

    Revision Surgery L4/L5 due to BMP Complication age 36 (November 20,2014) Dr. Michael Kelly (St. Louis, Mo)

    Revision Surgery due to broken rod scheduled for October 19, 2016 with Dr. Michael Kelly (St. Louis, MO)

  11. #11
    Join Date
    Dec 2008
    Location
    illinois
    Posts
    766
    Hi Ed,
    Sorry you are being bothered. I agree we need you well---you are a great source of information and FUN! I did the neck shots, and it can help for sure. I am sure you need to rule out the other health issues.
    I am fused like you but also have c5,6, 7 fused. I am having problems again with arms and neck and see the Dr on thursday. Lets see what it is now!
    Sorry about your mom. I had tried to reach you but the box was full.
    I hope all works out for you.
    Jackie

  12. #12
    Join Date
    May 2010
    Location
    Indianapolis area
    Posts
    966
    Ed,

    Twitching can be caused by lots of things. Caffeine. Allergy medicine. Magnesium deficiency. Withdrawal from drugs with depressant qualities.

    Finger numbness can also be caused by carpel tunnel.

    Go get yourself checked out, and let's hope it's something minor!

    Evelyn
    age 44
    80* thoracolumbar; 40* thoracic
    Reduced to ~16* thoracolumbar; ~0* thoracic
    Surgery 3/14/12 with Dr. Lenke, T4 to S1 with pelvic fixation
    Not "confused" anymore, but don't know how to change my username.

  13. #13
    Join Date
    Apr 2010
    Location
    Waterloo, IL
    Posts
    1,690
    Ed,
    I don't have any suggestions, but just wanted you to know that I'm thinking of you and hoping that things can get worked out so that you get relief. You are such an inspiration that we all think of you so fondly and also think of you as superman with your wild videos. It just doesn't seem possible that you can be having problems. I guess we're all human. Best of luck with finding a good resolution for your neck problem.
    Karen

    Surgery-Jan. 5, 2011-Dr. Lenke
    Fusion T-4-sacrum-2 cages/5 osteotomies
    70 degree thoracolumbar corrected to 25
    Rib Hump-GONE!
    Age-60 at the time of surgery
    Now 66
    Avid Golfer & Tap Dancer
    Retired Kdgn. Teacher

    See photobucket link for:
    Video of my 1st Day of Golf Post-Op-3/02/12-Bradenton, FL
    Before and After Picture of back 1/7/11
    tap dancing picture at 10 mos. post op 11/11/11-I'm the one on the right.
    http://s1119.photobucket.com/albums/k630/pottoff2/

  14. #14
    Join Date
    Oct 2008
    Location
    Sunshine Coast, Queensland, Australia
    Posts
    3,261
    Good luck Ed. I hope this can be worked out quickly and with the minimum of fuss so you can get on with enjoying your life without your spine having any say in it!
    Surgery March 3, 2009 at almost 58, now 63.
    Dr. Askin, Brisbane, Australia
    T4-Pelvis, Posterior only
    Osteotomies and Laminectomies
    Was 68 degrees, now 22 and pain free

  15. #15
    Join Date
    Mar 2010
    Posts
    2,755
    Quote Originally Posted by titaniumed View Post
    Rohrer

    Last year (Jan 2012) I saw my surgeon and had x-rays done of my neck. I donít have those copies....

    Dr M pointed out that my C5-6 was going to be an issue and if need be he would do shots....I will be as hesitant as possible on CTís due to radiation and would rather do an MRI.....He does have extensive cervical training from TCSC

    I will give it another week and see what happens with the Chiro and ultrasound.....things are improving very slowly.....Iím trying to dodge this bullet....(temporarily).

    Did you know that you can suffer from frostbite from an ice pack? I had no idea....

    I am taking 3 yr old Celebrex at night only. They are expired, and seem to be only half the strength. Hmmm.....

    I now remember struggling with loading my bags into the overhead bin on one flight....Next time, I will fly in a wheelchair. Dr Risser did this 40 years ago and showed up at a scoliosis meeting in the chair and everyone asked ďwhat happened?Ē He then stood up, smiled and said that it was so much easier to travel in this manner. (smart guy)

    Its my left hand that is numb. All the fingers also. The twitching has stopped, but that doesnít mean all that much....fasciculations are common with ALS and it starts as ďLimb onsetĒ or ďBulbarĒ which targets the throat, which is nasty. With limb onset, it starts with one leg or arm, transfers to the other limb, then up or down. My chances of getting it are higher, but it is a rare disease. 1: 100,000

    The twitching makes me very nervous....Michael J Fox stated that his Parkinsonís started with a left pinky twitch back in 1984.

    Sharon, If you find anything that Dr Hey has, Iím interested. We are all interested....

    I had inversion boots in 1982...that was a while ago. I fell off the bar back then and hit my head with 150# plus of pressure and am probably paying for that right now.

    Iím feeling a little better today.

    Ed
    I'm glad you are feeling a little better. I would be careful with chiro adjustments of the neck if you have underlying problems. I've had some neck adjustments that literally felt like lightening bolts were shooting out of my fingertips. My doc wasn't pleased with that at all.

    I don't know a whole lot about ALS. You read my post about my dad having some form of undiagnosed disease in the class of Muscular Dystrophies. That's why I was so upset when they refused to diagnose him, because they are all pretty much hereditary. I've had constant twitching in predominantly my right hand ring finger since I was 16 years old along with some of the other symptoms he had. So I understand your worry. It really is best for you right now to get your neck thoroughly checked out. You know that nerve impingement can cause permanent damage if untreated too long. It will also relieve any anxiety you are having to know for sure that it is your neck that is causing these symptoms.

    Yes, I understand about the radiation exposure from CT's. I've only had one, but we scolies probably all glow in the dark as it is! I would definitely get an MRI asap. I was told by my scoli doc that some things can be seen better with a CT scan, but for looking at disc problems and arthritis I'm sure an MRI is just fine.

    You are like our Rock of Gibraltar here. You help everyone here so much. So, if there is any way we can help you in return, I'm quite positive I can speak for everyone here that we will do what we can to return the favor. I know I'm just throwing ideas your way, ones that I'm sure you have already thought of, but I'm just drawing on my own limited experience.

    Have you thought of getting in to see your original surgeon? Will it take long? If so, I have gone through my PCP to get tests ordered. It's just a way to expedite things. New symptoms are extremely nerve wracking.

    Oh, and YES you can get frost bite from an ice pack. That's why you should always wrap them and leave them on no longer than 20 minutes at a time.

    I was prescribed Celebrex not long ago, just to see how it helped versus the OTC NSAIDs. It didn't work nearly as well as Aleve (naproxen sodium). So, if your stomach can tolerate it, I've found Aleve to work the best over any of the other ones (the name brand gelcaps seem to work the best). I've tried just about all of them, Rx and OTC. It even works better than ibuprofen.

    I hope you find some relief soon!

    Take care.
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

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