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titaniumed
01-04-2012, 04:22 PM
Guys

Iím having neck problems. Stiff neck actually, one of the most stubborn with spasms running down my fusion mass. The spasms are not as bad since being fused holds the vert in position. Iím having trouble holding my head up, and its affecting my reading vision along with eye twitching since last Feb. My eye surgeon says dry eye, and they are dry, but I think its more than that. My neck has no scoliosis in it, it actually looks great to the layman.....I donít know if I have bone spurs in my neck, but I will give it a few more days, before I see my surgeon.....

I sure hope this settles down soon. I am prepared and not afraid just in case I have to do something surgically with my neck.

Sorry about my lack of activity lately, Iíve been wiped out.

Ed

JenniferG
01-04-2012, 05:18 PM
Ed, I'm sorry to hear this. I truly hope it's nothing that needs surgery, but I hope you can see your surgeon asap. You need to know what you're dealing with - hopefully nothing scoli-related. Take care.

livingtwisted
01-04-2012, 06:19 PM
I have very similar issues. For a long time I have had neck pain and headaches. More recently it has turned into a stiff neck and vision issues. At its worst I feel achey and weak along my whole spine and that my head feels way too heavy to hold up. I've been to a neurologist and been diagnosed with atypical migraines, and a combination of diet and occasional migraine meds seems to be helping. I've also been told by one ortho that its possible that the stress of having to hold my crooked body upright is a contributing factor to the migraines.

I haven't had surgery, so its possible that what you are experiencing is unrelated to that. Regardless I hope you find answers and feel better. Please let us know how it goes.

jrnyc
01-04-2012, 10:41 PM
so sorry to hear this Ed...
i hope it is something very temporary...
it sounds uncomfortable & painful....
feel better soon...

jess

LindaRacine
01-04-2012, 10:52 PM
Ed...

We're working on a study to determine just how common (out hypothesis is that they're very common) neck problems are in deformity patients as compared to non-deformity patients.

I wonder if problems might be weather related. I do cervical range of motion exercises every morning, so am very aware when I start having issues, as I can't move my head nearly as well. I've had problems for the last 2-3 months. Every day, I hope that today is the day that my range will return to normal.

Anyway, sorry that you're having issues. Hope it's all temporary.

--Linda

jrnyc
01-04-2012, 11:01 PM
Linda...what is the relationship, IF any, between neck problems and spinal patients who have HAD fusion and neck problems in spinal patients who have NOT had fusion....
do both have neck problems....is there a change after fusion surgery...?
did any have so called whiplash accidents before their surgery, or an
illness with classic neck pain that remains after treatment, like Lyme...
how do you "tease out" these issues?

jess

LindaRacine
01-04-2012, 11:18 PM
Linda...what is the relationship, IF any, between neck problems and spinal patients who have HAD fusion and neck problems in spinal patients who have NOT had fusion....
do both have neck problems....is there a change after fusion surgery...?
did any have so called whiplash accidents before their surgery, or an
illness with classic neck pain that remains after treatment, like Lyme...
how do you "tease out" these issues?

jess

As I said, we're working on it. No data yet. I'm guessing that most spine docs would tell you that the neck issues are pre-existing, and have nothing to do with fusion. I'm also guessing that we won't be able to tell whether fusion changes anything, as we won't know if people who get identified as having cervical issues after fusion, had the problem before surgery, but didn't pursue treatment. Once we've looked at all the data, we may consider a prospective study to answer some of the questions, but I'm not sure there would be enough value in something like that. All we can look at for now, are the numbers of patients who have either reported neck pain to us, or who have had cervical radiographs (in addition to either full spine or lumbar films), in the two patient populations (deformity vs. non-deformity). What we're talking about is arthritic changes, not trauma.

mabeckoff
01-04-2012, 11:28 PM
Ed, I am sorry to hear of your neck issues. I just got back from Dr Bederman and he has given me the green light to go ahead with more PT and OT. Right now, my neck feels like what you are talking about .It doesn't feel like it can hold my head up.
Hope you get some relief

Doodles
01-05-2012, 01:35 PM
Ed--
You've done so well for so long, I'm really sorry to hear this. I've had neck problems and headaches since I was 12--probably the start of the scoliosis. There is a slight curve in my neck from the back x-rays but is a straight slant from side views without the curve it should have. I asked Dr. Lenke if surgery would help the neck problems and he said there were no guarnatees on that. That is true. My neck is usually sore and tired--some days holding up my head is hard--it seems really heavy. Also creates a burn into my shoulder/top of back. I do see chiro who uses "Impulser" which helps. I know when it's at it's worst if I remember to do some neck exercises on the bed it does help. Simply raising head an inch and turning head from side to side & back down. I really don't remember where I got them. Sure hope this gets better for you. Janet

titaniumed
01-05-2012, 01:40 PM
Thx Guys

I have had 2 adjustments at my Chiropractor with some improvement. I donít think Iím done with the problem, at least the nerve jabs have subsided. Iím not taking any meds.

I have had the occasional neck problems before being fused......but nothing as stubborn as this time. A study would be of some interest.

Iím wondering about the future, if my surgeon can clear out any bone spurs or trim what needs trimming without fusing. If this doesnít straighten out completely by next week, I will have to pay my surgeon a visit and see what he says. He has a Twin fellowship and specialty training in cervical.

I had quite a bit of trimming done in my lumbar, and it really did the trick.

Ed

Pooka1
01-05-2012, 03:54 PM
Ti Ed,

Sorry to hear this.

Cervical seems to be an active area of research as far as I can tell so maybe there is an answer out there. I'll keep an eye out for anything.

Sharon

loves to skate
01-05-2012, 04:00 PM
Ed,
I am so sorry you are having neck problems. Last May, I had a neck spasm that I thought was the end of the road for me, meaning I was thinking surgery. However, after an MRI which looked nasty, and doing some range of motion exercises along with a short course of cortisone, things are much improved. I still get a little tingling up the back of my head on the left side from time to time, but really not much to complain about. I hope it will be the same for you. Just for the record, I have had neck problems that started back in 1999. Physical therapy should help along with ice or moist heat and or an anti-inflamatory. With insurance dictating what Surgeons can or can't do, surgery is the last resort.

Take care, Sally

golfnut
01-05-2012, 05:08 PM
Ed,
I'm so sorry to hear of your neck problems. I hope it's temporary and that you get relief soon without having to do anything major.

dolores a
01-05-2012, 07:05 PM
Hi Ed, sorry to hear about your neck, hope it's winds up not a major issue. The biggest and probably the only issue is also my neck, I also always wondered if it is scoliosis related - my surgeon does not seem too concerned though. I've always had problems in my neck, but after my surgery, my neck never feels right. One thing that happens often is that my neck will make a very loud cracking noise, sounds like a pop gun, so loud people will here it across the room. My theory is that the neck has to compensate more now that I don't have mobility in my back. Anyway, I don't post much anymore, but I do check in to see different issues that everyone might have so I can compare, this forum is still so informative to me even after having my surgery 2 1/2 years ago!

Susie*Bee
01-05-2012, 07:20 PM
Ed-- I also want to let you know I'm sorry to hear about this. I have some neck problems sometimes, but my doctor says I have arthritis there-- plus that is where my fusion starts (T2). So I think it's just an area that is prone to weakness/aching if I overdo or am physically tired there. I can feel it grating sometimes when I turn my neck. But it's not a big problem because I don't do things that stress it very much. I sure hope you get some relief soon and that you're back to your active self soon.

foofer
01-06-2012, 12:42 AM
Hey Ed,
I really hate hearing this. It sometimes seems like scoli-bodies are easier to map starting with the spots that do NOT hurt.

I have neck issues and am not fused. One of my fears is that the surgery will send the neck issues further down the road, but who knows anyway how the cervical problems would progress, with or without surgery? I have had tons of PT and it does help me, but it often takes awhile. I had my first cervical steroid shot a couple weeks ago, and I was dancing around the living room the next day singing Christmas carols. It's not as great as that every day, and I'm thinking that you are somewhat opposed to those treatments for yourself, but it might be a way to buy a little time to enjoy life for a spell. For me, the kicker is often how much sleep disturbance I'm having. I've had episodic spasms, pain, the head-holdin up problem, and they come and go. I get the migrainey headaches and light dances, and they come and go. I had a little work incident in September and am a workers comp case for awhile and their protocol was for me to get the shot, and I finally did it when I had these bizarre all night episodes where my wrist would seize up, wake me up, and when I would straighten it I would hear a large crack. It went on for many nights and I was becoming a very Scroogelike woman. The wrist and electric arm/shoulder thing are better. Now I intend to just kick it at physical therapy. What do I have to lose?

Anyway, I hope you do see your surgeon, even if it subsides. It's nice to know what exact little drama is going on in there. My MRI showed lots of spurs and disc yadayada but nothing horrifying, despite the disturbing symptoms.

I feel for you!!

Confusedmom
01-06-2012, 03:27 AM
Hi Ed,

Bummer! I'm sorry you are having problems. I like to think of you as the poster child for successful back surgery! I know it's not your fusion you're having problems with, but still...

I, too, have neck problems, though I am not fused yet. The back of my neck is always sore. When I do something that requires looking down for any length of time (like typing on my laptop-ha!), it will be even more sore later. Cracks are an all-the-time experience. I have tried to do range-of-motion exercises since I read that Linda did them a few months ago, and I think it helps keep things from getting worse. I have also stopped sleeping with a pillow, because that seems to make things worse. Often times, the neck problems seem to go right into my jaw, and I get cracking there, too, and pains up the right side of my face.

I asked Dr. Lenke about this, because I want to avoid the problems getting worse with fusion. I had a cervical MRI, which he said looked pretty good, actually. He hypothesized that the discomfort is caused by uneven muscle strain from my back curvature. He said surgery "might" help by making things more balanced. I expressed concern about junctional kyphosis creating more neck problems, and he said that's why they plan to fuse me to T3 or T4, so there isn't much space left for kyphosis (or that was my understanding).

I have also found shoulder and neck massage to give some temporary relief.

I hope you find solutions that hopefully do not require surgery. If so, pass them along!

Best wishes,
Evelyn

debbei
01-06-2012, 06:15 AM
Oh no Ed, I am sorry you've been having these problems. I hope it clears up soon!

titaniumed
01-06-2012, 12:35 PM
The pain is gone, but I cant turn my head to the right. Guess I will start racing NASCAR. Specialize in left turns only. Ha ha

Thanks for the support, the shots seem to make the most sense if this doesnít clear up. I am doing rotational stretches very slowly for now.

Stiff is one thing, but when the nerves start hitting it becomes desperate. Iím used to it now I guess. Once again, the back is great!

Neck studies would be of value, not for just scolis, but everyone. Our design is so complicated.....

Ed

jrnyc
01-06-2012, 03:54 PM
i worry that this happend to you at the four year mark, at least, it looks like
4 years in your signature...
is there something in the fusions that adds weight or pressure to the neck that
starts to show after years....
this is what worries me...no "long term studies" of newer rods...
not the folks who had Harrington 20 years ago, but the ones within the last
10 years...WHAT are the long term effects of fusion on the rest of the body....?

that said, i hope you feel better and better everyday...
what does the head turning mean to skiing...?
being a cold weather hater, i know nothing of outdoor winter sports..
brrrrrr...but i want you to be able to continue to ski...for whatever crazy
reason anyone wants to go head first down a freezing mountain....
i sense it brings you great joy....

jess

mabeckoff
01-06-2012, 03:58 PM
i worry that this happend to you at the four year mark, at least, it looks like
4 years in your signature...
is there something in the fusions that adds weight or pressure to the neck that
starts to show after years....
this is what worries me...no "long term studies" of newer rods...
not the folks who had Harrington 20 years ago, but the ones within the last
10 years...WHAT are the long term effects of fusion on the rest of the body....?

that said, i hope you feel better and better everyday...
what does the head turning mean to skiing...?
being a cold weather hater, i know nothing of outdoor winter sports..
brrrrrr...but i want you to be able to continue to ski...for whatever crazy
reason anyone wants to go head first down a freezing mountain....
i sense it brings you great joy....

jess

I am with Jess regarding outdoor sports but it does seem to bring you great joy so I want you to be able to continue doing what it is that you love

What do you do for your job? Could that be involved with your neck?

scooter950
01-06-2012, 05:04 PM
Hi TiEd, like everyone- I am sorry to hear about your neck pain, and spasms along the back- you know I just had my C spine fused, in Nov, I had daily neck and shoulder pain, torticollis, especially with weather changes. But I DID have Cspine Abnormalities on Xray- unlike you.
I'm feeling much better now- just a dull neckache, praise God. But I know what you're feeling, and I sympathize. I'm glad the chiro made it a little better, here's hoping you see great improvement soon! xxx jamie in texas

titaniumed
01-06-2012, 07:25 PM
Jess

You are right! At the end of this month I will be 4 years out. With the neck, stress like Linda has said plays a big part, sleeping wrong also a huge factor, or simply twisting can trigger loud pops every once in a while. Many non-scolis have neck problems, I donít think itís a factor on your decision making. My fusion ends at T2, my neck issues are higher up.

I am reviewing contracts for Curtiss Wright.....Jet engine components to be exact. There is a little stress involved in that, the financials are significant. Can I blame them? No, I donít blame anyone.....(smiley face) these things happen.

The lack of snow isnít helping any. We have no natural snow, last year at this time we were running a 30 foot base. Someone needs to turn the switch back on. We just had the least Dec snow for the whole US in 47 years.

On your bending question with the knees, you can do a single knee bend with one hand on a counter top. So, left hand on counter top, bend right knee, move left leg back till left knee touches floor. Since you sit, your knees donít pass the 90 degree mark. This should work for you. You might practice. This is easier than a squat using both legs.

Ed

jrnyc
01-06-2012, 08:04 PM
well, i am glad to hear it is not caused by your work...
you wouldn't need to be searching for a new line of work on top of everything
else! i really hope it resolves with no surgical intervention needed!

i noticed the lack of snow nationwide....
i hope you guys out there get all the snow you wished for at Christmas,
and please, keep it from getting anywhere near the east coast!
we had our fill last winter...
& then the quota was filled with the foot of snow we got back on
October 30th, 2011

thanks for the knee advice...i tried it...i felt awkward, but it
probably takes practice, as you said...
both knees are rotten, but left is worse than right...
isn't getting older fun...?
but i forgot, according to your signature, you are getting younger!

feel better soon...
jess

jeneemohler
01-06-2012, 09:33 PM
:( :( :( :(

BOO!!!! Where is the "dislike" button???

I hope you get to feeling better ASAP, it snows like a son of a gun, and you get out to play!!!
My 1 year appt is next Thursday, and I am on pins and needles, waiting for the go ahead to ski...

Bring it on!!!

kennedy
01-06-2012, 10:23 PM
ed i'm really sorry about your neck

rohrer01
01-06-2012, 11:00 PM
Guys

Iím having neck problems. Stiff neck actually, one of the most stubborn with spasms running down my fusion mass. The spasms are not as bad since being fused holds the vert in position. Iím having trouble holding my head up, and its affecting my reading vision along with eye twitching since last Feb. My eye surgeon says dry eye, and they are dry, but I think its more than that. My neck has no scoliosis in it, it actually looks great to the layman.....I donít know if I have bone spurs in my neck, but I will give it a few more days, before I see my surgeon.....

Ed

Sorry, Ed. I'm sad to hear that this problem has happened to you. It sounds a lot like what I live with on a daily basis... dry eye diagnosis and all. Well, I don't have trouble holding my head up, but it hurts all the time. My neck checked out with a very, very mild bone spur. I get terrible headaches, too. My neuro thinks it is because of the high and tight scoli, but I don't know. One doc's guess is as good as another for me anymore. It's a guessing game with mine. I sure hope they figure out what is causing your problems and I hope it's not too serious. Do you need reading glasses or wear bifocals? I know when my neck hurts really bad I have a hard time reading. I recently got bifocals and I'm not straining so much to read and it actually hurts less in my neck. I think I was tightening up because I couldn't see. I would go with your gut feeling and make sure to tell your doc ALL of your symptoms. I know how aweful neck pain is. I ran out of pain meds and woke up crying the other day. You truly have my sincerest sympathy and empathy. Please let us know what they find. I hope you can get it fixed and feel better soon! Are you going to see the same guy that fixed your back? I think I remember you saying that he specializes in neck pain. Take Care.

titaniumed
01-07-2012, 12:16 PM
Its improving at a slow rate, I will take it. Iím doing the rotational exercises that Linda mentioned and its helping. So much for racing NASCAR....LOL

I have readers, and progressives. The progressives are at work, and have an acute sweet spot....I donít care for them as much. My readers are on my dashboard in my car next to my $8 sunglasses. lol

My vision is fine today....funny how it relates to the neck. I donít get headaches, and the dizzyís stopped about 3 months after I terminated my meds.

Yes, my surgeon went through a scoli and neck fellowship at Twin. He did 19 years of schooling and training. I knew about TCSC, and SRS, and felt that his stats were credible. You think about what has happened there over the years, many of the best surgeons in the scoliosis arena have spent time there at some point.

Jenee
Gosh darn Jenee! You ARE ready! Careful with bending and putting your ski boots on.....thatís a science.
Your emoticons are not showing.....am I running too much security? Hmmm......Iím using Kaspersky.

Ed

rohrer01
01-07-2012, 04:32 PM
Emoticons haven't shown up on my computer since I came back to the forum after my "break" for a little while.

debbei
01-08-2012, 07:29 AM
Emoticons haven't shown up on my computer since I came back to the forum after my "break" for a little while.

Me either (only on this forum.)

Ed--I'm using Kaspersky too, I wonder if that has somehting to do with it.

jrnyc
01-08-2012, 09:47 AM
don't think so..
think it is just a forum thing that started when they reconfigured a little bit....
none of the emoticons seemed to work after that...

jess

mabeckoff
01-11-2012, 11:44 AM
Ed, how are you doing? Haven't heard from you in a while so hope you are doing OK

titaniumed
01-11-2012, 06:30 PM
Melissa

The neck is ok now. I have been so busy at work, crunching numbers all day long.......We have had NO snow at all and they are playing golf in Tahoe.

What was your decision on the shoulder surgery?

Ed

mabeckoff
01-11-2012, 08:07 PM
Melissa

The neck is ok now. I have been so busy at work, crunching numbers all day long.......We have had NO snow at all and they are playing golf in Tahoe.

What was your decision on the shoulder surgery?

Ed

Glad to hear that your neck is better. I am going for PT for several weeks and then on 2/16 I will meet with the shoulder surgeon. My pain is so bad however and I have very
limited mobility

lapieper
01-17-2012, 08:33 PM
I haven't been on here in ages, but thought I'd put in my two cents. Many of the descriptions of the neck pain fit me to a tee -- prior to my surgery. The first thing I remember telling my husband when I first woke up from the first surgery was, "My neck doesn't hurt anymore." And I had whiplash previous to the surgery, and many visits to many different doctors, many X-ray, MRIs, etc. My neck occasionally hurts now, but usually due to sleeping crooked, or as crooked as one with rods in back can do! I've had a one year checkup since my last surgery (Nov 2010), and all appears well. I am extremely glad to have had all the surgeries, but I do have a TENS unit right now for that darned scapular muscle that just won't quit aching. I'm only using the TENS every other day, so I'm progressing through this pain, as I have with all other post-op pains. Dr. Floyd did mention having one more surgery to remove all hardware, stating this might relieve that muscle pain. But I have lots of time to ponder that. I want to continue healing and enjoying life for a couple years before having any more surgery. Got my left basal thumb joint fixed, so healing from that. NO more surgeries for a couple of years, at least. Planning a two week motorcycle trip from Idaho to San Antonio, Texas, this summer. Riding is not a problem!

mabeckoff
01-17-2012, 09:16 PM
I haven't been on here in ages, but thought I'd put in my two cents. Many of the descriptions of the neck pain fit me to a tee -- prior to my surgery. The first thing I remember telling my husband when I first woke up from the first surgery was, "My neck doesn't hurt anymore." And I had whiplash previous to the surgery, and many visits to many different doctors, many X-ray, MRIs, etc. My neck occasionally hurts now, but usually due to sleeping crooked, or as crooked as one with rods in back can do! I've had a one year checkup since my last surgery (Nov 2010), and all appears well. I am extremely glad to have had all the surgeries, but I do have a TENS unit right now for that darned scapular muscle that just won't quit aching. I'm only using the TENS every other day, so I'm progressing through this pain, as I have with all other post-op pains. Dr. Floyd did mention having one more surgery to remove all hardware, stating this might relieve that muscle pain. But I have lots of time to ponder that. I want to continue healing and enjoying life for a couple years before having any more surgery. Got my left basal thumb joint fixed, so healing from that. NO more surgeries for a couple of years, at least. Planning a two week motorcycle trip from Idaho to San Antonio, Texas, this summer. Riding is not a problem!

Glad to hear that you are doing so well. I love road trips. How do you know if your hardware is bothering you?

backissues
01-18-2012, 08:41 AM
Ed, Sorry to hear of your neck issues but glad that the exercises are helping a bit. It's good that you don't have headaches associated with it. You are so supportive of the problems of everyone else, we figured that you were "in the clear." I guess that can be counted on. There are also aches and pain that come as we "age."

There's little natural snow in the East. I thought I would get to try cross-country this year but not much snow in the woods. There is man-made snow on the downhill areas.

I had headaches associated with the occipital nerve. They went away for a while but are back, but less often. Fioricet seems to help but I wait until I can't stand it before I take it and then float for a while until that feeling passes and the headache goes away.

Good luck with feeling better. My thoughts are with you.

Regards, Irene