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titaniumed
04-04-2013, 09:09 PM
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

mabeckoff
04-04-2013, 09:28 PM
Ed,

I hope that you get some relief.

I have the same pain problem but for different reasons

Irina
04-04-2013, 09:33 PM
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.

Confusedmom
04-04-2013, 10:24 PM
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

tae_tap
04-05-2013, 08:02 AM
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

Pooka1
04-05-2013, 08:03 AM
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.

TwinmomTN
04-05-2013, 11:07 AM
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

rohrer01
04-05-2013, 11:41 AM
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.

titaniumed
04-05-2013, 04:56 PM
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

tae_tap
04-05-2013, 05:03 PM
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

jackieg412
04-05-2013, 06:29 PM
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

Confusedmom
04-05-2013, 07:58 PM
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

golfnut
04-05-2013, 08:38 PM
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.

JenniferG
04-06-2013, 01:42 AM
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!

rohrer01
04-06-2013, 11:08 AM
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.

jane d
04-06-2013, 09:19 PM
I too was sorry to hear about your Mom. I lost my mother when I was 42 and my dad when I was 37. My mother also was an artist and as a child I went to sleep every night listening to her play classical music on our piano. I still miss them but it does get a lot easier with time. They both died of primary brain tumors.

I had pain in the cervical part of my spine in the early 90's and found out that 3 of my vertebra were fusing on their own. When they completed fusing the pain went away but I do not have good movement of my neck. I have severe degeneration in the rest of my cervical spine and was fused from T4-sacrum 8 months ago. Dr Lenke told me that my fusion might indeed aggravate my neck issues but I had to have the fusion as my curve was progressing significantly. Eight months before my fusion I started having problems with my right arm which were said to be coming from problems at the C5/C6 level by a local surgeon. I waited a month without treatment and it went away on it's own. I know I will probably have more problems because of my neck again at some point. My son bought a used inversion table but it did not help me and I felt it probably had the potential to cause harm. Sleeping on a cervical neck pillow years ago did help with the pain in the upper part of my cervical spine until the vertebra fused and then I no longer needed it. Hope you get some relief soon!
Jane

scooter950
04-09-2013, 08:57 PM
adding my sincere sympathy, for the loss of your mother and now for this new "pain in the neck/ arm/ numb fingers". especially that you cannot look up ugh!

Ed, you know the answer- get the imaging first, then find a neurosurgeon or an ortho who specializes in necks, and get first class advice. I had pretty bad neck pain/ upper back pain radiating down my arm- prior to my C spine surgery. I tried to get a second opinion from a neurosurgeon but he wouldn't see me - for whatever reason. But I decided if I trust my surgeon with my spine then he might as well do my neck too. turned out very well. and surprisingly- I did not lose too much mobility in my neck either.

Conservative treatment? My friend bought a reverse incline chair: you are seated, it is less stress on the spine, and yet it allows you to control the angle of inversion and it did help with her back pain. I'd imagine it might relieve the neck pain- try craigslist.

Injections? steroids may offer temporary relief- they usually do the injection with imaging to be sure they are safe. some people do get significant relief -- but the first step is imaging. make the call- call your Primary care doctor and get the referral for an MRI. then a new referral to the ortho. ( dont'cha love playing the insurance game??)

ALS- now, i will pray that your fears are unfounded. I often have fasiculations too, they get worse, some days ; other days- don't remember I had fasiculations. if you just went through the stress of losing a parent, and no doubt= helping settle the financial burdens -- you have had some amount of stress, that may contribute to the fasiculations. please keep us posted. I am so sad to hear of your new pain, and I will pray for a quick answer and treatment. God bless + Jamie in TX

Doodles
04-09-2013, 09:27 PM
Ed--
You have received lots of good advice here--usually you are the provider of that! I sincerely hope there is a relatively easy fix for you. So sorry this is continuing to be such a problem for you. Thinking of you & hoping for the best. Janet

susancook
04-10-2013, 08:32 PM
Ed, there are tons of reasons for twitching and funny movements. Don't panic and think ALS automatically.

My experience with chiropractors is that they just move things around and in my experience, there was temporary relief, then my back just went back to the painful position.

Let your fan club know how you are doing! I wish you the best.

Hugs, Susan

titaniumed
04-10-2013, 10:29 PM
Funny how I struggled all those years with sciatica pain from my herniated discs......my right leg pain was so much fun. Now itís the reverse, I now have the left arm pain.....I had a few pain free years after my scoli surgeries, that was nice, and now the pain returns. I thought I was home scot free.....

Chiro has pretty much taken care of the neck pain, but my arm is not resolving itself at the speed that I would like and it is now looking like Iím going to have to make that appointment with my surgeon. Traction helps, but doesnít last.

Shots anyone?

Jane, after reading your post, I spent the evening listening to Chopin.

One of the pianists that my mom hung with was Grace Castagnetta. She was an incredible pianist and played worldwide. Once at Christmas, I begged her to play ďflight of the bumblebeeĒ for me and she stated that it wasnít written for the piano, but I have an idea of what you would like to hear. She then proceeded to slam the keyboard from 20 inches and into a quick stacatto run. I was 10 yrs old and was sitting next to her on the stool (with jaw agape) I never recovered. She had ďhandĒ braces made for her in Russia so she could stretch her hands to help in reaching the octave.

Just some memories.....

Iím going to Panama and Colombia this summer......I will be diving Coiba, which is choice advanced diving. I owe this to myself. Scuba Steve will know what Iím talking about. There will be a vast assortment of large apex predators there....(smiley face)
http://en.wikipedia.org/wiki/Coiba

Thanks for everyoneís concern....and I hope everything is ok with you Susan and Irina!

Ed

JuliaAnn
04-11-2013, 10:00 AM
Scuba diving? Wow, Ed, you are truly amazing. I've been praying for you since first reading this thread. I know having a high fusion (up to T1) means I have to be careful with my neck the rest of my life. Your correction was up to T2, right? Did you do a lot of skiing this winter? Do you wear any kind of brace on your neck while skiing, just in case? Sorry about all the questions; I just want you to stay safe and careful. I wouldn't want you to get hurt. You're too valuable.

It must have been so wonderful to have a mom who played the piano. I used to enjoy playing the piano but quit over six years ago when my back hurt more and more. It never occurred to me that perhaps my children liked to hear the music. You have inspired me to play the piano again.

I'm glad the chiropractor worked well for you. I hope you get continued relief.

JenniferG
04-11-2013, 08:09 PM
"I had a few pain free years after my scoli surgeries, that was nice, and now the pain returns. I thought I was home scot free....."

This is my greatest concern - that while things are going very well, it may not last. I don't know how I'd cope if I had to live with pain again.

But the good news is, it's likely that this can be resolved, Ed. And on you will go with your life, your skiing and your diving. Keep hold of that and you will get through this. Keep us up to date. Good luck!

titaniumed
04-11-2013, 09:22 PM
Julia

No, I didnít ski much this winter due to lack of snow. Last winter was bad but this one was worse....I donít wear a brace while skiing, just a helmet.

I donít know what to say about DDD. It seems as if I have bad discs.....or do we scolis have higher disc problems? Maybe there is a study on this question.

Jen

As far as pain is concerned, we are seasoned pros at the pain game.....its like riding a bike. I can handle pain, itís the interrupted sleep that really wears on me.

I made an appointment with my surgeon today because Chiropractic really cant do much if there is disc damage. It can help with some of the pain, and discs can retract,(I have seen this happen with myself a few times) but it seems that after trying for years with my 4 lumbar herniationís, my cutoff point is now set at 2 weeks instead of 6 years. I need a shot to put the fire out. Besides, severe DDD does lead to vertebral end plate damage.

If it ever came down to fusing more levels in my neck, I would be interested in an artificial disc......I wonder if any posters here or on SOS have had this done?

I cant wait to go diving at Coiba.....itís the next best thing to Cocoís Island or the Galapagos. I donít want to do a live aboard because its hard on our muscles. All that rocking 7-24 is really tough to deal with after a few days. Coiba will be land based diving.

I will be sipping champagne and attending Aguardiente parties in Medellin soon...... Itís the local ďrocket fuelĒ. I hope I survive this trip. LOL
http://en.wikipedia.org/wiki/Aguardiente

Ed

mabeckoff
04-11-2013, 09:49 PM
Hope you get some relief soon Ed.

titaniumed
04-16-2013, 09:07 PM
Guys, Iím reading a little but not posting because Iím in pain.....

I have an appt with my surgeon on the 23rd...

I stopped all Chiro and traction....my neck feels ok, just a little sore when looking up, but my arm hurts like the dickens.

4 yr old Celebrex works about 1/2 strength. Do meds lose potency or effectiveness with age?

Hanging in there

Ed

Pooka1
04-16-2013, 09:39 PM
Glad you are hanging in there, Ed. You'll find the answer.

rohrer01
04-16-2013, 10:01 PM
Ed,
I'm glad you are going to see your surgeon. To answer your question, yes, meds lose there potency with age. That's why they have expiration dates. Most meds, aside from some antibiotics as far as I know, do not become "poison" after they expire. They just lose their original strength.

I got chastised by my doctor because I threw out about a four year old bottle of oxycontin because I thought it smelled funny. The chemically smell had just accumulated in the bottle. The doc told me that they would have still worked for me as I needed them badly. At that time I hurt too bad to even get to the doctor and was too embarrassed to call an ambulance. I couldn't move...at all. Needless to say, I felt REALLY STUPID for throwing out that medication.

JenniferG
04-16-2013, 11:16 PM
Glad you don't have long to wait. You'll get to the bottom of this Ed, and get it fixed. Take care.

jrnyc
04-17-2013, 12:39 AM
so sorry you're hurting, Ed
it is my experience that meds lose potency over time...
a doctor once told me meds lose effectiveness...he was telling me
not to keep antibiotics much beyond expiration date...

as for the alcohol...you may still be hurting, but with that level of alcohol
content, you definitely won't care!!!

hope you feel better...
jess...and Sparky

gardener
04-17-2013, 07:42 PM
I'm not fused at all, but I have very similar neck and arm symptoms along with severely degenerated C5-6and C6-7. I can't look up without bending my knees and have limited range in looking left and right. My forearm aches and my hand will just let go of things from time to time. I've tried a lot of treatments but the most helpful has been physical therapy that strengthened and stretched neck muscles, pectorals, arm and hand. The stabbing burning pain in my arm seems improved at the least by increased blood flow. For a period of time I wouldn't trust my hand with holding anything breakable, now at least I get a warning to loss of function with preliminary increase in achiness. I also regularly use Voltaren gel (nsaid) on my neck and that can help quite a bit. I can apply that up to 4x a day. Surgery isn't an option for me right now so these things help at least a bit.

titaniumed
04-17-2013, 08:21 PM
I also regularly use Voltaren gel (nsaid) on my neck and that can help quite a bit. I can apply that up to 4x a day.

Iím so glad you posted about this ďtopicalĒ NSAID. I have never heard of this....

Have you taken oral NSAIDís? Celebrex, Bextra, Vioxx, Naproxen, etc? If so, how does Voltaren compare?

I am aware of the dangers associated with NSAIDís but right now I will turn a blind eye.

Thx
Ed

tae_tap
04-18-2013, 09:13 AM
Iím so glad you posted about this ďtopicalĒ NSAID. I have never heard of this....

Have you taken oral NSAIDís? Celebrex, Bextra, Vioxx, Naproxen, etc? If so, how does Voltaren compare?

I am aware of the dangers associated with NSAIDís but right now I will turn a blind eye.

Thx
Ed

Ed,

We use topical compounds that seem to help many with neuropathic pain. Voltaren is not a bad one (but is pricey and has been an on/off again product that we can't always get), I have used it before but if your doctor works with a company that makes topical compounds this is what I would recommend: Baclofen 2%, Bupivacaine 1%, CMO 2%, Cyclobenzaprine 2%, Diclofenac 5%, Gabapentin 6%, Ketamine 12%, Ketoprofen 20%. This is a strong topical that works as an inflammatory neuropathic pain/muscle relaxant. We have seen many positive results from it, especially with the Gaba in it without the normal side effects of the oral medications.

Just a thought you could run by your doctor to see if he could prescribe the compound to be made. Hope you get things figured out.

Tamena

rohrer01
04-18-2013, 11:40 AM
Ed,
I've also used Voltaren gel. I didn't get any relief from it. I was prescribed a topical compound similar to the previous poster, but with not as many things in it. I believe it had Lidocaine, Gabapentin, Ketoprofen (or another NSAID), and one other thing I can't remember. I posted it under one of my threads. It did give me some relief for awhile, then it just seemed to quit working. I know my bottle got old and some of the compounds in it started to crystalize, so that could be the reason. I had to use it 3 to 4 times a day for a few days before it seemed to start having maximum effect. I used it particularly on my neck. I would apply the cream and then lay down with a hot rice pack. It was kind of pricey, but worth it at the time. I think I payed $43 for a one or two ounce bottle if I'm remembering correctly. Tamena's cream compound sounds even better than the one I had. I'd go for that one if you can get a pharmacist to brew it up for you.

jrnyc
04-18-2013, 11:53 AM
hope you find something to help your neck short of surgery, Ed...
just a note...be careful with Celebrex....i had a violent allergic
reaction to Vioxx...apparently i can't handle Cox 2 inhibitors...
more's the pity, as Vioxx relieved a lot of joint pain for me...
but after the violent allergic reaction that cut off my breathing,
i had the start of a reaction to Celebrex (hives, etc) and stopped
it immediately...
just my way of warning anyone allergic to Vioxx may likely also be
allergic to Celebrex...
but that still leaves many other NSAIDS for those people to try...

hoping you feel better....
jess...and Sparky

rohrer01
04-18-2013, 12:00 PM
hope you find something to help your neck short of surgery, Ed...
just a note...be careful with Celebrex....i had a violent allergic
reaction to Vioxx...apparently i can't handle Cox 2 inhibitors...
more's the pity, as Vioxx relieved a lot of joint pain for me...
but after the violent allergic reaction that cut off my breathing,
i had the start of a reaction to Celebrex (hives, etc) and stopped
it immediately...
just my way of warning anyone allergic to Vioxx may likely also be
allergic to Celebrex...
but that still leaves many other NSAIDS for those people to try...

hoping you feel better....
jess...and Sparky

Didn't they pull Vioxx off the market? Maybe it was another one that I'm thinking of. If you have an allergic reaction to any NSAID, it is my understanding that you have the high potential to be allergic to them all. I hope this is not the case for you.

loves to skate
04-18-2013, 05:46 PM
Ed,
I have been away from my computer for a few days so missed your post. I'm so sorry to hear you are having neck issues. My neck problem is at C3C4 and can cause numbness up the back of the head. My primary care gave me a ten day course of an oral cortisone which helped a lot. I also have had facet joint injections which helped. Unfortunately, NASAIDS are out of the question for me. Ice and heat also help. If all else fails, I can get a prescription for a decompression unit from Dr. Hey. By the way, my last appointment with Dr. Hey was canceled at the last minute, this time due to family issues with Dr. Hey, so hopefully I will be seeing him in a couple of weeks.
Yes, Vioxx was pulled off the market but Celebrex is still available. I hope you can get some relief soon Ed so that you can enjoy your diving vacation.
Take care, Sally

titaniumed
04-20-2013, 02:04 PM
Well, thanks guys for the info on the products.....this is always helpful.

I will report after we find out what is going on......

Sally, I hope Dr Hey can help you out. I bought a Franklin Spanish translator EST-7014, I will do a review on that since I have to learn Spanish in record time as I have to go to probate court in Colombia.....
http://electronic-translator-review.toptenreviews.com/franklin-speaking-global-est-7014-review.html

Life always throws new twists for us everyday. I should add this to my signature.

That and ďLiving tissue over metal endoskeletonĒ ďArnold Schwarzenegger in T2Ē
http://www.youtube.com/watch?v=pj5_7jnIXm8

I kinda like that scene.....(smiley face)

Ed

rohrer01
04-20-2013, 02:42 PM
I remembered the other thing in the compound. It was amitriptyline. I'm not sure what the percentages were as I don't have the bottle anymore.

I hope you learn Spanish fast. The sentence structure is different than English so everything sounds backwards.

Are you planning on getting a titanium skull plate if you need surgery on your neck? Then you could have the REAL Arnold effect! My husband got a piece of shrapnel embedded in his chest from grinding metal. It freaked me out because there was a definite hole in his skin and it exposed the shiny metal. He didn't even know it was there. For a moment I wondered if I married an alien in disguise! JK, no I excised it and he was fine. I should have taken a picture of it, though! It was the most awesome injury I've seen on him so far. =)

titaniumed
04-20-2013, 03:36 PM
Arnold wasnít fused to the neck...but that hand he had in that movie was really neat!

(This is a little graphic)
http://www.youtube.com/watch?v=mStmiGS43jQ

If there was some way to replace the spine with something of this caliber, some fine machining work, ....that would be something!

There would be no way they would fuse me all the way up. Thatís for extreme cases.....I certainly have thought about it in the past with my neck locked completely up....Selection of levels for fusion surgery especially when you donít have many left has to be done carefully.

I never had any accidents grinding things....the speed of a 6 inch wheel on a surface grinder running at 3750 RPM equals a surface footage of approx 5400 ft/min or around 62MPH. Bench grinders also run this speed.

I donít like accidents at work. I am constantly watching out and warning for these kinds of scenarios.

Ed

rohrer01
04-20-2013, 03:58 PM
Oh no, not fusion on your neck. You are right, that's the last ditch effort. They can do things with your discs and remove bone spurs, etc. I had a doc tell me that they now have artificial discs at my hospital. That's getting pretty close to the whole mechanical spine thing. Maybe some day they can put it to use in we scolis!

I just meant since you'd be put under general anesthesia, they could slip a plate under your scalp. That way if you ever got cut, you'd freak people out. Not funny for those who really do have skull implants, I know, unless they have a sense of humor about it. I can't get out of my head the scene where half of his face was ripped off exposing his robotic skull and eye. Ahhh, the younger years when gruesome violence and special effects were entertaining for me. I outgrew it. I don't watch stuff like that anymore, but it never leaves your brain. Once in, never out!

Fortunately my hubby's injury was minor. Freaky, but minor.

titaniumed
04-20-2013, 10:40 PM
Yes, they are doing artificial discs now......Its something that I would entertain if need be.

I do have faith in the engineering and the materials....we have come a LONG way in material science in just the last 5 years since I have been posting here.

I know someone who takes amitriptyline.....I donít think I would want to go there. I donít have a depression or anxiety problem, never had. I always try to stay upbeat no matter what happens. I also have not missed a day of work with this current neck problem. It seems that movement helps with the pain. As soon as I stop physical activity, the pain returns so I keep moving.

Pain is something that I have learned to deal with through the years....So has Mick Mars with AS. AS patients use amitriptyline. Here is a quote from Mick

Mars actually offered some advice to those out there who might be diagnosed with Ankylosing Spondylitis. He suggests seeking out second opinions, since he is living, guitar-playing proof that the condition is not a death sentence that fully limits activity. He said, ďThere are a lot of people that go around that suffer from this type of thing and they go to their doctor and he tells them that they will be in a wheelchair. My advice to them is to go to another doctor because he is wrong.Ē
http://loudwire.com/mick-mars-says-illness-wont-stop-him-from-touring-with-motley-crue/

http://en.wikipedia.org/wiki/Ankylosing_spondylitis

Even though A/S is a different disease, we are all in the same boat...

Ed

LindaRacine
04-21-2013, 02:25 AM
Ed...

When I first started taking prescription NSAIDs (about 30 years ago), it took about a year and a half to find the one that worked for me (etodulac). I'd try one for a month or two, and if I didn't notice any discernable difference, it was on the the next one. I kind of thought my rheumatologist was just trying to placate me, but in the end, I learned that he was telling the truth. We're all different, and what works for one of us, may not work for the next one. I actually just got off etodulac. I've been seeing a cardiovascular doctor, and it turns out that etodulac has some sort of effect on the vascular system.

So, my message to you is to keep trying if you think there's something out there that will work. The one thing I know is that you need to take the NSAIDs every day. Taking them only whenI had a lot of pain was totally ineffective for me.

BTW, I've been having some cervical pain myself, for about 6 weeks, and am sort of freaking out at the thought that I might eventually need to have something done. The thought of losing any more flexibility is something I can't even begin to face. This is the first time I've even mentioned the issue.

Hope you get some relief.

--Linda

jrnyc
04-21-2013, 11:05 AM
hey rohr
Vioxx was indeed pulled off the market...quite a while after i
reacted to it...
Celebrex is in the same class of drug...and i cannot take it...
Vioxx, Celebrex, and Bextra are all Cox 2 inhibitors...they selectively
target Cox 2...
the other NSAIDS...that i can take...do not...
i believe they target Cox 1 only...
a pity...Vioxx worked so well for me....before it almost killed me
by cutting off my breathing and starting to close my throat!

jess...and Sparky

Susie*Bee
04-21-2013, 01:26 PM
Vioxx worked well for me also. I'm sorry you had such a close call with it, Jess. Ed-- as with Linda, it took me several tries with different NSAIDs to find something that worked after the Vioxx. Voltaren does the trick for me - generic is diclofenac. They are all different with your unique body chemistry. Some just didn't do anything. When I had to be off it for just a week for some minor surgery, all the arthritis pain set in again... Knees and hips mostly. I can feel my neck popping and grinding too, as I have arthritis there and am hoping it doesn't cause me problems as I'm fused to T2 already.

Linda-- so sorry to hear about your neck pain also. Hope and pray it won't involve more surgery.

jrnyc
04-21-2013, 01:43 PM
Susie...i took diclofenac also...for the hip pain that mysteriously
appeared and disappeared 3 weeks later...
it is not my prescription...but i will ask my pain doc about it this
Wednesday when i see him....
i just have to be careful which NSAID i take...
this is first time since Vioxx that any of them helped me...

hope you feel better, Ed...
and i hope scuba diving does not aggravate the pain...

jess...and Sparky

rohrer01
04-21-2013, 06:33 PM
hey rohr
Vioxx was indeed pulled off the market...quite a while after i
reacted to it...
Celebrex is in the same class of drug...and i cannot take it...
Vioxx, Celebrex, and Bextra are all Cox 2 inhibitors...they selectively
target Cox 2...
the other NSAIDS...that i can take...do not...
i believe they target Cox 1 only...
a pity...Vioxx worked so well for me....before it almost killed me
by cutting off my breathing and starting to close my throat!

jess...and Sparky

Jess, the other NSAIDs don't target only Cox 1. They do, indeed cover both Cox 1 and Cox 2, otherwise they wouldn't work. Cox 2 enzyme is the one that causes inflammation. Cox 1 lays down a protective coating in the gut. That's why there was so much research being done to find an NSAID that targeted Cox 2 specifically. Apparently the molecule shapes are similar, which makes finding a binding site on the Cox 2 molecule challenging. I'm talking cell bio and biochem mumbo jumbo. Anyway, that's how they have to go about it in the simplest terms.

jrnyc
04-21-2013, 06:57 PM
hey rohr
all i know is that the three SELECTIVE Cox 2 inhibitors are Vioxx, Celebrex
and Bextra...and i cannot take any of them....
i will ask my pain doc and my NYC pharmacist why i am able to take
diclofenac..with no allergic reaction...so far...
there has to be a reason i have only reacted to the selective ones...
i had a few other of the NON SELECTIVE ones before...years ago..
i was not allergic....i stopped taking them because none seemed to help...
the hip pain is first time any NSAID helped me at all....
thank goodness the pain disappeared as mysteriously as it came...
so for now, i do not need an NSAID....i take pain meds for the spinal
pain and it is not the sharp kind of pain that so shocked me with the hip
pain...
what did shock me was how much my upper spine hurt while standing
still for all those X ray shots April 18th, when they took so many pix
(because they didn't have correct equipment)...
sorry i didn't leave before they started!

Ed, didn't mean to steal this thread from you...my apologies


jess...and Sparky

rohrer01
04-21-2013, 07:02 PM
Yes, they are doing artificial discs now......Its something that I would entertain if need be.

I do have faith in the engineering and the materials....we have come a LONG way in material science in just the last 5 years since I have been posting here.

I know someone who takes amitriptyline.....I don’t think I would want to go there. I don’t have a depression or anxiety problem, never had. I always try to stay upbeat no matter what happens. I also have not missed a day of work with this current neck problem. It seems that movement helps with the pain. As soon as I stop physical activity, the pain returns so I keep moving.

Pain is something that I have learned to deal with through the years....So has Mick Mars with AS. AS patients use amitriptyline. Here is a quote from Mick

Mars actually offered some advice to those out there who might be diagnosed with Ankylosing Spondylitis. He suggests seeking out second opinions, since he is living, guitar-playing proof that the condition is not a death sentence that fully limits activity. He said, “There are a lot of people that go around that suffer from this type of thing and they go to their doctor and he tells them that they will be in a wheelchair. My advice to them is to go to another doctor because he is wrong.”
http://loudwire.com/mick-mars-says-illness-wont-stop-him-from-touring-with-motley-crue/

http://en.wikipedia.org/wiki/Ankylosing_spondylitis

Even though A/S is a different disease, we are all in the same boat...

Ed


I'm wondering, too, if they can replace cervical discs. If they are doing it, it should be better in a couple of years for those that can hold out that long. I haven't heard anything about the use of these discs in scoliotics, but I'm sure I'm not the first person who ever thought of it. That would be so awesome!

keep us updated as to what Dr. M. says.

titaniumed
04-21-2013, 11:28 PM
I've been having some cervical pain myself, for about 6 weeks, and am sort of freaking out at the thought that I might eventually need to have something done. The thought of losing any more flexibility is something I can't even begin to face. This is the first time I've even mentioned the issue.

Hope you get some relief.

--Linda

Wow, we both started at the same time!....must be neck season!

Why is it that we get our whole spines fused and we have problems with our ďnormalĒnecks? This just isnít fair...It sure seems like we have disc problems across the board as scolis.....all levels.

I am prepared for the worst news and it really doesnít bother me all that much since there is no choice in the matter. I would rather have my neck fused and have my arm functioning than the other way around since I really cant lift much right now, and have chores I would like to do at the house.

Why does the pain always seem to come during the night? It really makes sleeping difficult.

I hope this passes quickly for both of us....

Ed

gardener
04-22-2013, 08:09 AM
I second what Linda said about using the nsaid every day, not just when there's pain. My neck problem began 3 years ago, following poor positioning during a minor surgical procedure. I'd explained my back problen to the surgeon and requested special care in positioning for the procedure. I went under a light anesthesia for a breast biopsy, was repositioned while under the anesthesia and woke up unable to use my left arm. I had to learn to reposition myself for sleeping so I could keep the arm elevated, otherwise the pain was nearly unbearable. I still need to sleep that way, otherwise, I have residual achiness all day.
Working with a great PT, I found a regime of exercises that helped build strength and get back most arm and hand function. It now works most of the time - I haven't dropped a plate or coffee mug in months. After trying a lot of meds, the topical diclofenac, used every day on my neck is what finally seemed to work. I'd had degenerative problems building in my neck for a while, but something got pinched in the repositioning and it took about 4-6 months to get everything calmed down to a reasonable level.

debbei
04-22-2013, 08:51 PM
Ed,

I'm sorry you're going through the neck/arm problems. You've done good for so long, and now this? :( Good luck with your appointment, is it tomorrow? I'll be sure to check back in to see what you report. I'm also very sorry to hear about your mom. You are in my thoughts. ((Hugs))

scooter950
04-22-2013, 08:58 PM
Fused C3- C7

When I started Physical therapy, I was afraid to move my head. But the therapist explained that most of the movement and pivotal action is at C1 C2 - the base of your skull! now, I can rotate my head (not full range of motion but I think it's pretty good); it is difficult when backing out of a parking space, (I like the idea about keeping a hand mirror in the car) And I can look up and down. the side -to- side movement is limited ( try to touch your ear to the shoulder- that is limited for me). I still have aches in the neck, but the pain is much less than pre-surgery.

I didn't want this surgery but when I met with the scoli surgeon I asked him about my neck pain - he told me the neck was just as bad or worse than my back. He recommended fixing the C spine first- to prevent any problems post-op.

As for my hands/ arms: I would drop things and I still have paresthesia in the arm and hands ( at times, not always). I also have stenosis at C2- C3 but I didn't want him to fuse me that high - plus, he would have to do a posterior approach and do a laminotomy ( sp?) so i opted for the anterior approach instead. But he could only reach to level C3, he put in a plate with 8 screws I think.

By God's grace, I will go back for the scoli surgery. I have noticed improved quality of life after the neck fusion, so I am hopeful that my back pain will lessen too, after my scoli surgery - to be scheduled sometime in 2014. I know there are others on the forum who had C spine fusion and scoli surgery too... they gave me advice & courage to do this. Maybe they will share their experiecnes as well. But- of course: I hope and pray that Tied and Linda and no one else here will need C spine surgery. after scoli surgery - may everyone recover and gain strength and stability. Be well , Ed, and travel safely! Jamie in TX

titaniumed
04-23-2013, 12:29 AM
This thread really is turning out to be an excellent ďneckĒ thread packed with information! I have to thank all of you for posting....

I have 2 Celebrex pills left......Oh no! But I also have some 4 year old Naproxen....

Donít worry..... I donít have an old bottle of Laudanum from 1880. (smiley face)

Ed

Pooka1
04-23-2013, 06:36 AM
The diet pills in the 1800s were really pills containing tape worm eggs. :-0

I suppose people lost some weight on those!

jackieg412
04-23-2013, 09:16 AM
This is really a great thread. All of us with spine fusions must put extra pressure on the cervical also. My fusions went like this --T10-pelvis, fractured t-9 right away, Then so many neck problems--had C5,6,7 fusion and the within 6 months had t2-t10 fused because of the fracture at t9. It does not solve all of the problems,but cervical is much easier then the major spine surgery. After this I still have numbness in some of my fingers and a problem in burning in the arms. Dr has not been able to help it out yet. I am on gabapentin for it, but the dose that I was on was making it hard to walk and I was falling a lot. On a lower dose that stopped,but the numbness has not. I must exercise the neck every day or it gets to painful to move much. I welcome everyone's input.
Good luck Ed on your doctor visit!
Jackie

rohrer01
04-23-2013, 09:28 AM
The diet pills in the 1800s were really pills containing tape worm eggs. :-0

I suppose people lost some weight on those!

This was no diet pill and could be bought over-the-counter:

http://en.wikipedia.org/wiki/Laudanum

rohrer01
04-23-2013, 09:40 AM
Why does the pain always seem to come during the night? It really makes sleeping difficult.
Ed

Are you sleeping with a therapeutic pillow? My neck pain is different because of my anatomy. Mine is absolutely worst when I'm sitting at a desk reading or doing some other task that requires me to look down for prolonged periods of time. If you sleep on your back, the neck bones tend to flatten out causing a loss of the natural lordosis. If you are a side sleeper, it can sag to the side or your head can be tilted up or down depending on how you position your pillow. I would suggest paying more attention to keeping your neck in proper alignment when sleeping. When my neck hurts really bad at night, I sleep with a soft collar. It helps a lot and might be worth a shot. You can buy them OTC at most pharmacies. I got my first one at the ER, but my second one I got at Shopko. They run around $10 or so.

gardenia
04-23-2013, 01:33 PM
Dear Ed!!!
I have not been on the forum quite as much as I am dealing with other problems but I can't believe that you are in pain. You, as Janet, said were one of my best supporter and of the forum. I think that for every encouragement you gave, you should get double blessing and free pain releive from wherever the magic comes from.

I am sitting here with little pain and feeling sorry about my lack of interests in life. And, you who are filled with things to do and places to go have to deal with pain again. One just wonder why good things happen to good people?

I am glad that you are going to see your doctor versus trying to find aspirin or bandages for temporary relief like so many of us have done in the past. The description of your aches and pain complicated with other stuff should be seriously looked at. Remember that most of us know that if we do something to relief this pain, it creates trouble in another place.

Hope that you doctor and insurance is the tops because you need to go to Coiba. I was born and raised in Panama way back then. Coiba used to be the Alcatraz of San Francisco. Not been back in more that decades but hope you can enjoy your trip there with pain out of the way.

My sincere hopes that there is a magic wand set upon your head down to your sacrum.

Gardenia

loves to skate
04-23-2013, 07:30 PM
I'm wondering, too, if they can replace cervical discs. If they are doing it, it should be better in a couple of years for those that can hold out that long. I haven't heard anything about the use of these discs in scoliotics, but I'm sure I'm not the first person who ever thought of it. That would be so awesome!

keep us updated as to what Dr. M. says.

Rohrer, They have been doing cervical discs at least for four years now. A high school classmate of mine living in the Charleston, SC area sent me a newspaper article about it being done experimentally in Charleston. I don't see why it couldn't be done on scoliotics as long as their fusion is balanced.
Ed, I use a very soft pillow, a synthetic down pillow that I can shape under my neck for support. I used to use a down pillow until a lot of the down managed to work itself out of the ticking and made a mess when I changed the pillow case. My trip to Cape Cod two years ago triggered much neck pain because I forgot my pillow and slept on a very firm bed with a hard pillow. I hope you get relief very soon.
Sally

golfnut
04-23-2013, 08:17 PM
I hope all of you with neck pain can get some relief. Ed, I'm anxious to hear what you find out. I wonder what percentage of those fused eventually have neck pain. I guess there is no point in worrying about it.
Best of luck to everyone.

debbei
04-23-2013, 08:36 PM
I'm looking forward to your update Ed....I hope things went well today.

rohrer01
04-23-2013, 11:03 PM
Rohrer, They have been doing cervical discs at least for four years now. A high school classmate of mine living in the Charleston, SC area sent me a newspaper article about it being done experimentally in Charleston. I don't see why it couldn't be done on scoliotics as long as their fusion is balanced.
Ed, I use a very soft pillow, a synthetic down pillow that I can shape under my neck for support. I used to use a down pillow until a lot of the down managed to work itself out of the ticking and made a mess when I changed the pillow case. My trip to Cape Cod two years ago triggered much neck pain because I forgot my pillow and slept on a very firm bed with a hard pillow. I hope you get relief very soon.
Sally

If they've been doing it for four years, why is it experimental? Also, I meant using artificial discs in place of fusion. Doing something like reshaping the vertebrae and sticking a fake disc in there that was preset not to allow the curve to return. This would still give people some flexibility.

Ed, I hope your lack of response is a good thing and not a bad thing. Let us know.

jrnyc
04-23-2013, 11:16 PM
rohr...every surgeon i asked...and i asked a lot of top ones...
about something flexible that would support the spine....they
all said there is nothing flexible that CAN support the spine...
my husband is convinced that something along those lines will
be developed one day...but i am sure not in my lifetime...
i think 50 years from now there will be a new material, maybe,
that can both support AND give flexibility....
and if the world is still here 100 years form now, maybe
replacement spines will be developed...like replacement hips.
i mean, replacement knees can bend...why not a spine?
someday. and that would take care of fusing the neck, too.

jess...and Sparky

titaniumed
04-23-2013, 11:17 PM
Ahhhh.....The suspense! No, Ti-Ed is not dying yet.....

Well....After x-rays, It looks like my C5-6 and C6-7 is showing signs of degeneration. (I knew that was coming) An MRI was ordered, should probably do that within the next few days and in the meanwhile, Iím taking the following.....and keeping notes of course.

http://en.wikipedia.org/wiki/Methylprednisolone
http://en.wikipedia.org/wiki/Voltarin Diclofenac
http://en.wikipedia.org/wiki/Neurontin Gabapentin

After the MRIís my doc will know more....

We talked about fusing if need be.......it would be from the front, and most likely the 2 levels mentioned above. Full discectomies, with peek cages using synthetic bone pastes.

If the above medications donít work, next course of action would be shots in the neck.

I was just checking to see if there were any ďTombstoneĒ fans
http://en.wikipedia.org/wiki/Tombstone_(film)

Wyatt Earpís wife Mattie Blaylock was ďdependentĒon Laudanum....and eventually overdosed from it. It was the ďcure allĒ in the wild west back in the 1800ís.

I have read over the years of many here that have taken gabapentin and wondered about it.....I guess I will find out here very shortly.....

Ed

mabeckoff
04-23-2013, 11:43 PM
Ed, I hope that you get some relief soon.
Pain is not fun

Melissa

jrnyc
04-24-2013, 05:30 AM
hey Ed
how long are you on the oral steroid...?????????

i hope it calms down the pain...along with the other meds...
and i hope surgery does not become necessary...

jess...and Sparky

titaniumed
04-24-2013, 09:23 AM
6 days

6 pills today, 5 Thurs, 4 Fri, 3 Sat, 2 Sun, 1 Monday....

The gab reduced some of the arm pain last night......slept 8 hrs

Ed

tae_tap
04-24-2013, 11:48 AM
6 days

6 pills today, 5 Thurs, 4 Fri, 3 Sat, 2 Sun, 1 Monday....

The gab reduced some of the arm pain last night......slept 8 hrs

Ed

The steroid should help quite a bit with the inflammation, but watch out for it can also cause one to be cranky and mean! I know from experience through use of it myself and with many of my patients, hehe.

Good to hear you finally got some sleep. 8 hours would be a dream!

If fusion is pretty much inevitable, why do they put you through the meds, shots, and pain if it can be fixed for good another way? I'm sure its insurance protocol, but it still bites that there is such a long drawn out process of trial and error.

Tamena

rohrer01
04-24-2013, 03:14 PM
6 days

6 pills today, 5 Thurs, 4 Fri, 3 Sat, 2 Sun, 1 Monday....

The gab reduced some of the arm pain last night......slept 8 hrs

Ed

Sorry to hear that your discs are going. C5-C6 must be a very common spot to go first. That's where I have a bulging disc and a spur at C5. Everyone with neck problems seem to state that level at least. I hope that they can get the inflammation down enough to get some pressure off of those nerves. It sounds like, two levels = two nerve roots. I think it was most likely the Voltaren that gave you the most relief last night. I've been on gabapentin and it is one of those drugs that you have to titrate up on and takes awhile for the full effect. Maybe it made you sleepy, which is a good thing. Your MRI will be the tell all. If it's bad enough I can't imagine them making you go through steroid shots first. I hope you continue to feel better.

loves to skate
04-24-2013, 03:34 PM
If they've been doing it for four years, why is it experimental?

It was experimental then, probably not by now.

loves to skate
04-24-2013, 03:50 PM
Ed,
I was on the same combination of meds as you are a couple of years ago for neck pain and numbness and it did the trick, so I am hoping it works the same for you. The Gabapentin can make you very sleepy and sometimes spacey which lessens overtime. The steroid can keep you from sleeping. The Diclofenec is a NSAID which works very well on pain. I am glad the Gabapentin overrode the steroid so you could get a good nights sleep.

Tae-tap, why go directly to a fusion when many time, the less invasive will work?

Sally

tae_tap
04-24-2013, 04:01 PM
Sally,

I just wonder if the disks are that bad to start isn't it only going to get worse? I just think sometimes the drugs are just a stall of the inevitable. But I work with feet all day, not spines so I was really just thinking out loud. Many times in my field surgery is the only thing to fix a problem (like bunions, they don't just disappear with a shot) but insurance requires us to do shots and physical therapy prior to a bunionectomy. I just wish the problem could be fixed for good and not just patched for a short time.

Tamena

jackieg412
04-24-2013, 05:34 PM
Hi Ed,
Hopefully all will get better before long. The combination of things you mentioned helped me for a long time. Maybe 10-12 years. It is well worth giving it a try. I was fused c567,but that was well after the first major problem. My daughter is going through the same thing and her dr is treating her like yours recommends. I say it is well worth trying.She does not have the spine problem .I have another post in revision forum looking for some more suggestions also.I am still having some issues in thorasic or neck. Can't tell!

titaniumed
04-24-2013, 11:50 PM
The medication program I am on is working quite well. Its been 14 hours and I would say that the raw tenderness in my neck has reduced about 50%. These medications are incredible and a life saver.

I was expecting some side affects since there are all sorts of warnings about driving and working with machinery. I was not grouchy in the slightest in fact it was the other way around with great jokes just rolling off my tongue all morning.....boy did I have a lot of fun!

I feel so relieved that I could almost stay on this regiment but I think I am gaining weight “by the minute”. (smiley face) Hopefully, I wont explode like the guy in the Monty Python movie.



Ed

jrnyc
04-25-2013, 12:01 AM
so glad to hear that you are getting relief...
i would guess the prednisone type stuff is responsible for the
weight gain...
and it just may be that the weight stops when the dose of steroids
is finished...
i hope the pain relief is lasting...

hope the pain relief helps you to have a great time on your scuba
expedition...but please be careful anyway...no overdoing it!!!

jess...and Sparky

debbei
04-25-2013, 06:19 AM
The medication program I am on is working quite well. Its been 14 hours and I would say that the raw tenderness in my neck has reduced about 50%. These medications are incredible and a life saver.

I was expecting some side affects since there are all sorts of warnings about driving and working with machinery. I was not grouchy in the slightest in fact it was the other way around with great jokes just rolling off my tongue all morning.....boy did I have a lot of fun!

I feel so relieved that I could almost stay on this regiment but I think I am gaining weight ďby the minuteĒ. (smiley face) Hopefully, I wont explode like the guy in the Monty Python movie.



Ed

I'm so glad you're getting relief and feeling better. Sounds like the happy Ed is back with all your jokes.

http://www.youtube.com/watch?v=enSYlCEz5VI&ytsession=lGEWhkf2_wTmtrPyCFw8MgQGCjEOdGy6ivAsTdia 2wRwwUWiVywA5DiMvShhxQV3EALDM0kXeLq85nrQzVNfWeTFrt akQ28pXBCk2KHVYjA9GhRf1FRz-rer8giHZe2U1_q5lqzSi3utaq0Nt7kq-XcGE3u5WmfNWMWQm3l0Rl3zxxReY3nTL8kgs1mcfhfnddKXU8-qhvN8AO6dU8-V5aPELMbm3_tvu0-QK5V-OWd2jScmCQ-oUa5RruN69JZnHDC6f9fvAfDsjIw_7VGp3_T5ZGuDIqxFQLGcK D4jjkpqbYcGjMVPFenO3Zk994NjAPhaasr-KVPKN6RNMdT8AV4nsnGGKH9-jX73aJngpC8VYdr5oyEXlRtVWEJYaDPCOy8DWk7P1JTvBuHigj Ia2AqZFjZINXKb_-eOFr3t31xidwGneR7bwbanyvbtp6Atnlncck4JMIv6sEMaS7DQ QInop-qsRSxq4c33WUF3nMk_hPmjbrwJN_Z7g9rF94zdUbFa7rumnYPZ MVQbnyNlIbqCNZJjUwA5AyDb8mecHRrV6hvwcIUs4qYovlSX3B yPo8wvJTRFCIZAHpWkqG8WlWqxQacphoTOw8ttoGClye4

JenniferG
04-25-2013, 06:37 AM
Glad to read that you're getting some pain relief. Take it easy Ed.

Irina
04-25-2013, 12:24 PM
I am also happy that you're doing better, Ed. You've been such a great support to everyone here, like a superman, you have to get better!

Susie*Bee
04-25-2013, 02:57 PM
Yay, Ed. Exciting news! Hopefully the meds won't cause weight gain. I've been on both without having that problem (just chubby on my own at times...). My husband takes gabapentin for his bulging cervical discs... and I've been taking diclofenac for years for my arthritis. Best wishes for the new regimen.

JuliaAnn
04-25-2013, 05:56 PM
Ed, I'm so glad the meds are working for you! I tried a chiropractor for three days once and they didn't do a thing for my back. That was ten years ago, when my back first started to collapse. How does a chiropractor work for a back that's rigid after surgery? I'm quite curious about that since chiropractors work joints pretty hard but a back that's fused should never be twisted.

I've been following this thread with great interest since I'm fused from T1 to sacrum. Those long fusions are really hard on the neck. I mentioned to Dr Hey that I'll be careful with my neck the rest of my life and he agreed that would be good.

Have you been able to figure out if there is anything you did to make your neck worse? I will learn from you and follow any of your recommendations. My neck seems shorter since my surgery and more turkey-neck-curved, much to my disappointment. I try to hold my head up as far as possible often, just to stretch my neck, just in case it will help. Was yours the same or better after your surgery?

I've been thinking of you and keeping you in prayer.

mabeckoff
04-25-2013, 07:52 PM
Glad to hear that you are feeling better

Melissa

loves to skate
04-25-2013, 08:32 PM
Sally,

I just wonder if the disks are that bad to start isn't it only going to get worse? I just think sometimes the drugs are just a stall of the inevitable. But I work with feet all day, not spines so I was really just thinking out loud. Many times in my field surgery is the only thing to fix a problem (like bunions, they don't just disappear with a shot) but insurance requires us to do shots and physical therapy prior to a bunionectomy. I just wish the problem could be fixed for good and not just patched for a short time.

Tamena

Tamena,
Sometimes the pain happens because of the way you sleep or if you are very tense and the neck muscles spasm so once the meds kick in, the muscles relax and the pain goes away. Sometimes the cervical spine will self fuse. My hope is that I will never have to have a fused neck because then you lose all motion in the neck. If the drugs work, it is possible that they will work for a lifetime.

Ed,
I am so glad that you are getting relief.

Confusedmom
04-25-2013, 11:05 PM
Glad to hear it!!

titaniumed
04-26-2013, 12:26 AM
Debbe
I see you posted some Monty Python! Ahhh...the memories. I had Mr Creosote from ďThe meaning of LifeĒ posted. You know, the restaurant scene where he explodes, but decided to delete it..... They really pushed the comical limits pretty hard. LOL John Cleese and many came out of Cambridge and Oxford....(smiley face) Iíve been laughing about that scene for 30 years now.....I guess it was worth it.

Julia
Fused spines should never be adjusted....It was my neck that needed attention, the un-fused area of my spine....

I donít know why I have had so many herniated discs....this is now 6 in my life with 4 CT verified in 2002.
I wonder if some of the really hard ski crashes through the years had something to do with that? I really had a few doozies through the years.... It will be nice when the science progresses and we know more about this because it affects so many people including people without scoliosis.

We talked about me waiting and battling ďexcruciatingĒ pain for 6 years with 4 lumbar herniationís prior to my surgeries. It wasnít worth it, and I am not going to do that again. If my neck mellows out, fine, but how long will I last before the major pain kicks in again? If it does in 6 or 12 months, I will not hesitate to give the green light....I might have little tolerance for this due to my history. My decision scales will tip easily. Ker-plunk!

Funny how decision making changes with knowledge....I am pleased with my current fusion because I donít have pain. Adapting to fusion is easier than living with pain, it really is. But the pain Iím talking about is not your standard early years ďacheĒ in the thoracic, or lumbar humps pain. Iím talking about the nerve related electrical, burning, soldering iron, 10 level pain that is just excruciating. Feelings of flames on your skin or perhaps getting kicked by a horse would be a good way to understand what this is like. I hope that people can understand that this affects decision making, and that those that are younger, need to understand this, and weigh the options. Defining pain is a hard thing. Knowing what you can tolerate is important because what you think might be bad isnít that bad. Living with an un-fused spine is great....I miss it, but it really is ok being fused ďwhenĒ its necessary.

My cervical MRIís will happen tomorrow morning and I hope to get copies to post.

Ed

rohrer01
04-26-2013, 10:46 AM
Ed,
I'm so glad to hear that you are feeling better! It's just like a sigh of relief when that pain is gone. I've had the same steroid Rx that you are on several times. It was a lifesaver for me until I discovered the lumbar epidural. I was also prescribed it for neck pain. My pain never impinged on my nerves in my arm to the extent that yours are. I just couldn't move my head in any direction at all. Since mine wasn't as bad as yours I don't even dare to make a prediction as to how long this will last. Mine always lasted for at least several months.

Is there anything Dr. M. can do except fusion for your neck? If it comes down to it, are you a candidate for artificial discs? When my lumbar gets bad enough, they offered me that instead of fusion, so I'm just curious.

You are so right about pain. It is very hard to rate. You have your four herniated discs in your lower back to compare to. I have an unanesthetized C-section to compare to. It's really hard to get me to say a 10. In fact, I never do. My mother tripped and fell into a table saw and cut all 5 fingers, three were near amputations (holding on by only the skin) and one complete amputation and the thumb to the bone. With all of that, shock set in and she said it didn't hurt at all. After her reattachment surgery was a different matter. That, she said, was a 10 and I totally believe it. They have that pain scale all wrong in the doctor's offices. It shows a simple line with a smiley gradually getting less and less happy until the last one shows a frown and tears. They should show an exponential graph with a smiley person at the bottom and someone screaming, kicking and writhing at the top!

Anyway, I'm glad you're feeling better. A little weight gain is worth the relief. Besides, you'll lose the weight once your done with the steroids.

jrnyc
04-26-2013, 02:43 PM
hey Ed
i am so glad you are feeling better...
but i would not be one tiny bit surprised if the ski stuff definitely
caused some discs to blow...did you never come in from skiing
and think how sore...how much pain...you felt? or wake up the
next day and feel like that...????
you have such an active life in terms of recreation....
how about those heavy scuba tanks...what do they weigh out of the
water...?????

please...do not forget to be careful on your next excursion....
the human body can only take so much!!! and you are not
yet "robo-man"

jess...and Sparky

titaniumed
04-26-2013, 10:56 PM
Well, I have the MRI’s done and you can clearly see the 2 herniations....The pain in my arm has not gone away, the meds have helped BUT, I have an underlying problem for the future. Herniations are such a pain to deal with.

Jess, I do wonder but weight lifters technically should have all their discs blown.....Accidents don’t help, but they cant be the sole problem. Degeneration happens for a reason.......

Kinda tired tonite.

Anyway, here are the goods. You can see my T2 screws at the bottom of the MRI.

mabeckoff
04-26-2013, 11:13 PM
So what do you think you will wind up doing?

titaniumed
04-27-2013, 01:07 AM
Melissa

Well....I still have to see my surgeon again and see what he thinks. I think what will happen is that I will wait a few weeks on my current med program, and if that doesnít work, I will get my 1st shot. From what I have read, if the 1st shot doesnít work after 2 weeks, they try again.

I donít want to be taking meds all the time.... Even though the stuff Iím taking right now doesnít affect my mind, it still is tiring and I get very hungry. Iím gaining weight right now.....quickly. I have no constipation problems.

He told me he thinks the arm numbness is coming from C7. My left index finger is especially numb.

The meds have helped in my neck area but my shoulder, arm and numb hand and fingers are an issue. I have tingling from my elbow to my hand.

I donít think they stack artificial discs. I also have a very strong feeling Iím not going to get away with fusing just one level. I sure hope it isnít 3 levels.... Iím not especially worried about lack of movement. What I am worried about is if we fuse a few levels, will I have a PJK issue down the road from T2 to the bottom of the cervical construct?????

We talked about a ACDF on 2 levels.....(plated from the front) Anterior cervical discectomy with peek cages and synthetic bone cement, no BMP in the neck....thatís off label....

It seems that in this surgery, they donít strip muscles, so its a much easier recovery.

Ed

LindaRacine
04-27-2013, 01:00 PM
Ed...

Getting insurance companies to pay for a single artificial disc is often a battle. Two artificial discs? You'd probably have to hire a lawyer to sue the insurance company. Even then, it's pretty rare. If you've got the money, you can go outside of the U.S. and get artificial disc surgery for a relatively decent price.

There are a lot of theories about which causes disc degeneration. For example, there's a theory that disc degeneration (which includes herniation) is caused by a difference in the vertebral end plates, either from a genetic issue or by some sort of bug. So, it could be abnormal wear, or it might be something over which one has no control.

Hope you get some good relief from non-surgical measures.

--Linda

scooter950
04-27-2013, 05:33 PM
albeit temporary or not.. I have been prescribed gaba but i never took it, I really hate taking meds. <enter whatever sarcastic comment of choice here> (as I live on Ibuprofen and T3/ or percocet) but it's easier to stick to what you know, than start an unfamiliar med.

Ed, I am glad you have such an active lifestyle, and I am sure you will continue to be active- it is who you are! sorry about the appetite - its a consequence of steroids, but at least the steroids relieve inflammation. praise God for a good night's sleep!

the MRI is impressive: that cord is definitely compressed, degenerative changes remain, even if the steroids relieve some of the symptoms. but it may buy you time.

I read your comments about life with a fused spine- my pain is not that bad, as you described, but it's pervasive, it's ever present and annoying and I get crabby and it severely limits all my activity. I'm considering having the surgery regardless of my work probation period, i'm saving vacation time: up to four weeks now, so I won't need FMLA until after my regular vaca time and sick time is used up. things to think about. I read your comments about life with a fused spine- versus pain: I did get relief after the neck surgery, so I am hoping that scoli surgery will eventually relieve some of my back pain too.

anyway: I pray this relieves the arm pain for some time, and maybe you can stay on the gaba? thanks for sharing, I learn so much from everyone's experience- God bless ! Jamie in TX

mabeckoff
04-27-2013, 08:18 PM
Ed, I certainly hope you get some permanent relief

Melissa

Doreen1
04-28-2013, 11:29 PM
I'm sorry to hear about your neck issues, Ed. I have to have a brain and cervical mri next week. Was it uncomfortable laying on your back on the hard table?



Well, I have the MRIís done and you can clearly see the 2 herniations....The pain in my arm has not gone away, the meds have helped BUT, I have an underlying problem for the future. Herniations are such a pain to deal with.

Jess, I do wonder but weight lifters technically should have all their discs blown.....Accidents donít help, but they cant be the sole problem. Degeneration happens for a reason.......

Kinda tired tonite.

Anyway, here are the goods. You can see my T2 screws at the bottom of the MRI.

mabeckoff
04-28-2013, 11:59 PM
I'm sorry to hear about your neck issues, Ed. I have to have a brain and cervical mri next week. Was it uncomfortable laying on your back on the hard table?

Doreen, It was uncomfortable for me but not terrible.You will get thru it OK
what are you having it for?
Hope all goes well
Melissa

Doreen1
04-29-2013, 12:16 AM
Neuro and primary doc think I have MS.




Doreen, It was uncomfortable for me but not terrible.You will get thru it OK
what are you having it for?
Hope all goes well
Melissa

titaniumed
04-29-2013, 12:56 AM
Well Iím winding down on the Methylprednisolone steroid pills.....my last pill is tomorrow morning...

And my arm is very numb right now.....Sigh....I was hoping that somehow, this campfire could be put out.

Its been very hard to judge the gabapentin while taking these steroids......At least in a few days I will be able to judge the effects of the gabapentin. The diclofenac seems to work well.....

---------------------------------------------------------------------------------------------------------
Some fusion trivia......

Michael Collins had a cervical herniation before the Apollo moon flight and had a level fused back in the 60ís. It was a single level ACDF with bone taken from his hip.

Amazing that he was released by his surgeon to eventually resume centrifuge training to simulate 10g reentry. He made the Apollo 11 mission which was the mission in which they landed on the moon in July 1969.

http://en.wikipedia.org/wiki/Michael_Collins_(astronaut)

Ed

titaniumed
04-29-2013, 01:02 AM
Doreen

I thought you were doing ok....try not to assume anything right now, get your tests done. Deep breaths!

I laid my head in a cradle for the MRI and had to ask for something to support the lordosis in my neck while laying down. My arm hurt like heck for 5 minutes and I moaned and groaned....then told them to proceed.

My cervival MRI's were 4 sections of 2.5 to 4.5 minutes each where I had to lay completely still.....It wasnt bad....Not like the fulls they did for the scoli surgeries. Those took a long time.

Ed

mabeckoff
04-29-2013, 02:01 PM
Neuro and primary doc think I have MS.

Please let us know

I will be praying for you

Melissa

mabeckoff
04-29-2013, 02:05 PM
Ed ,

I hope that you get some relief that you can live with.

Melissa

debbei
05-10-2013, 09:54 AM
Hey Ed, how are you doing? I've been thinking of you.

titaniumed
05-10-2013, 04:39 PM
Oh...Debbe, hanging in there but not from my left arm. The meds have helped but the numbness is still in my left forearm and hand. I take one Diclofenac at night per day.....

I still need to make contact... The new ďportalĒ system at the docís office has me locked out. Isnít that lovely?

Software engineers.....gotta love em. Ha! The amount of heartburn these guys can produce is beyond words sometimes...... I have had more stress from this than I had with major deformity surgery.

Iím also not ďoverlyĒ fond of Gabapentin....I did test solo, and this stuff make me dizzy. But I do think it did help with the strong electrical shocks during the extreme painful stage last month....

Diclofenac works well.....it keeps the campfire of inflammation at a respectable height.

Ed

rohrer01
05-10-2013, 11:19 PM
Ed,
Sorry to hear that you are still having symptoms and can't get through to your doctor's office. That's a real bummer. I hope you are right handed! Is the pain under control enough to sleep at night? I hope so. It's the numbness that's got me worried for you. Since you've already had your MRI, will you be finding out what the next step is? Is there any way that they can shave down the protruding discs without fusing your c-spine? I would suggest asking if that could buy you a few years. But, on the other hand, if your neck is also hurting and would hurt still if they trimmed the discs, I guess fusion is the only option. I'm just thinking of possibilities of not having to be fused from top to bottom. You might also ask about artificial discs. But look at Melissa Beckoff. She's hanging in there with more fusion than I think I've ever heard about or seen. She's in pain for different reasons aside from fusion, at least that's my understanding.

I just feel bad for you and am trying to think of all of the different treatment options that I can. You have a great surgeon, so you know you are in good hands. Unfortunately, we all age and we scolies tend to wear our spines out more quickly. My C5/6 is already going, so it's just a matter of time for me, too.

I hope you get in contact with your doctor soon. Technology can be so great and also so annoying when it doesn't work right. Why can't you just call them and get an appointment? I guess I'm confused about exactly where the breakdown is in your medical system. I hope you get better soon.

Susie*Bee
05-11-2013, 08:48 AM
Ed-- thinking of you too. Glad to hear the diclofenac is working. I take it twice a day. Funny how some meds work and others don't. I have taken gabapentin in the past and I think I was ok with it. My husband takes it 3 times a day for his bulging discs in his neck. I am sure (?) it doesn't cause dizziness for him as he drives and uses heavy equipment some, etc. I will need to ask him if his arm is still numb. That was the first symptom he had about the bulging discs... his neck didn't bother him. The biggest problem was at night, sleeping. And his arm problem was why he went to the doctor... He usually just doesn't talk about things like that (aches and pains or numbness), so that is why I sound like an idiot at the moment. (big smile). He is like the energizer bunny, but even the bunny will run into a wall someday. When he got an epidural shot in his neck, that helped a lot. He's just had one. Best wishes.

titaniumed
05-17-2013, 02:39 AM
Thanks everyone for all the replies.....

Here is a fantastic informative ďneckĒ video from Dr Grossi from Duke. He answers many questions on the neck.....

http://www.youtube.com/watch?v=xFPk4efcJ1g

Ed

titaniumed
05-17-2013, 01:10 PM
My goddaughter will become a Doctor today and Uncle Ed is so proud!!!!!

She will do her residency in Louisville, and will train to become a pediatric emergency room specialist....Funny, at age 10 she wanted to do this....

I teased through the years and always called her a pupa growing up. She is no longer a pupa anymore....(smiley face)

Eager young minds....

Dr Crystal English MD

Ed

Pooka1
05-17-2013, 02:21 PM
Congratulations to her!

And congratulations to you for helping her achieve this dream.



My goddaughter will become a Doctor today and Uncle Ed is so proud!!!!!

She will do her residency in Louisville, and will train to become a pediatric emergency room specialist....Funny, at age 10 she wanted to do this....

I teased through the years and always called her a pupa growing up. She is no longer a pupa anymore....(smiley face)

Eager young minds....

Dr Crystal English MD

Ed

JenniferG
05-17-2013, 05:19 PM
How wonderful Ed!

Hearty congrats to you both!

Crystal is now a butterfly. <smiley face>

mabeckoff
05-17-2013, 06:00 PM
What wonderful news!

Doreen1
05-17-2013, 10:38 PM
So exciting about your goddaughter! It is amazing to see dreams come true. :)

Thank you for sharing the video. It was very helpful. What point are you at right now?

jrnyc
05-18-2013, 02:55 AM
hey Ed
what great news to read about your goddaughter...
i bet she will help lots of kids and their families...

just a note....i didn't like gabapentin the time i was given it, several
years ago...didn't help and made me sleepy....
i am still taking diclofenac....started taking it for the bad hip pain i
had....thank goodness that proved to be temporary....
was surprised and pleased that it is helping my spinal pain...
so i still take the diclofenac several times a week, twice a day...
i was pleasantly surprised, as years ago, other NSAIDS didn't seem
to help my back pain at all...

hope things get better for you without need for surgery...

jess...and Sparky

rohrer01
05-18-2013, 03:01 AM
Ed, congratulations on your goddaughter, too! I wanted to be a doctor growing up, too... never finished.

Jess,
When did you start the diclofenac? Is it helping your sciatic pain? I've only tried the topical formulation and it didn't help much. Gabapentin did absolutely nothing for me, either. I think most of my pain is bone pain and muscle pain, although I do get sciatic nerve pain. Is the diclofenac really harsh on the tummies? Anyone?

I have a hard time with NSAIDs because of that. =(

jrnyc
05-18-2013, 03:08 AM
rohr...been looking for explanation as to why i was violently allergic
to Vioxx, slightly allergic to Celebrex, but can take...so far....Diclofenac...
i found from reading internet that the major cox 2 inhibitors...the three
i mentioned to you...work differently on cox 1 and cox 2...
part of explanation of how the major cox 2 inhibitors differ from the older
NSAIDS was explained....

".....was established that the standard NSAIDs, such as indomethacin, diclofenac and ibuprofen, discriminated much less in their inhibition of the two enzymes, or if anything preferentially favoured COX-1 inhibition."

i didnt want to copy all the article...but if you look into it, the info clearly
states that the major cox 2 inhibitors definitely work in a different way....

as far as stomach stuff, i have had no bad effects so far with any
stomach problems from Diclofenac....a few years ago, i had really bad acid reflux and other stomach problems from years of oral antibiotics for Lyme....so i am sensitive to stomach reactions...so far, so good...
i keep forgetting to talk to doctor who gives me Diclofenac about the
cox 1 and 2 things...will try to remember next visit, end of June...

jess

titaniumed
05-18-2013, 01:16 PM
Jen

Yes, she is a butterfly now.....but residency is especially tough.... Much harder than medical school.

Back when she was making the decision to become a doctor, I told her that she has to be fully committed for life. Its not like you do this and do the old 9 to 5 thing....I mean, she could, but thatís not what her personality is about. Too boring and not enough fun. Stimulation requires hard work and new projects. She will specialize, which really means that she just started. This was addressed yesterday at the hooding ceremony amongst all the doctors. You could hear a pin drop at Lawlor events center.

Years ago, she saw how hard I worked with my business. I worked 100 hours a week and after Thanksgiving dinner one year, had to run back to work because I was committed to a project I was working on. I was always exited and committed, these were things that she saw years ago.....and I did it in major pain living with my scoliosis. I think this rubbed off a little bit. She also saw me get hit by the freight train that hard core deformity surgery provides, and saw me bounce back and move forward.....Whatís a little challenge right?

She was also the right kid....my little pupa.
----------------------------------------------------------------------------------------------------------------------------
Doreen

You ask the difficult question, ďWhat point are you at right now?Ē Pretty tired actually, my arm was completely numb yesterday at the ceremony.

I think Iím going to wait......here we go again. After watching this film and seeing that my surgeon has not ďpushed for surgeryĒ (a good sign of a great surgeon) I am going to continue with my current med program (diclofenac) for a while. This really makes things difficult with planning since I never know if I will have a major pain ďepisodeĒ. I like the word episode because it fits. Living with herniated discs can be done, surgery being dictated by how much we can handle. I am aware of your neck situation and you have my sympathy. I will be following your thread closely to see how things turn out for you.

I am proud of our medical school and research center. Itís the best in the world right now. There are billionaires up at Lake Tahoe that hide in seclusion and occasionally get bored, come down the hill, write a check and say, ďtear it down, and start overĒ. Do it now.

Money well spent.
Ed

Susie*Bee
05-18-2013, 01:41 PM
I, too, wish to express my congratulations to Uncle Ed on this most happy occasion! How exciting! How many buttons did you bust? I just am sorry about your own problems now. Take care and know that you are in my prayers and thoughts. Your friend (it's been ages now, hasn't it), Susie

jackieg412
05-18-2013, 04:32 PM
Thank you for the wonderful news about your goddaughter. It is always uplifting to hear good things. I feel bad that you are still being bothered though. You and your DR will know what is the correct thing to do. I am going to try to PM you---about the outcome of my court case. I still cannot post all info. Soon,
Maybe?

JuliaAnn
05-18-2013, 07:45 PM
Jen

Yes, she is a butterfly now.....but residency is especially tough.... Much harder than medical school.

Back when she was making the decision to become a doctor, I told her that she has to be fully committed for life. Its not like you do this and do the old 9 to 5 thing....I mean, she could, but thatís not what her personality is about. Too boring and not enough fun. Stimulation requires hard work and new projects. She will specialize, which really means that she just started. This was addressed yesterday at the hooding ceremony amongst all the doctors. You could hear a pin drop at Lawlor events center.

Years ago, she saw how hard I worked with my business. I worked 100 hours a week and after Thanksgiving dinner one year, had to run back to work because I was committed to a project I was working on. I was always exited and committed, these were things that she saw years ago.....and I did it in major pain living with my scoliosis. I think this rubbed off a little bit. She also saw me get hit by the freight train that hard core deformity surgery provides, and saw me bounce back and move forward.....Whatís a little challenge right?

She was also the right kid....my little pupa.
----------------------------------------------------------------------------------------------------------------------------
Ed

Congratulations to your goddaughter, Ed! What a wonderful achievement. Her ambition and determination are to be commended. Your goddaughter is very fortunate to have you in her life. You're such a great role model. You've been a tower of strength and I'm sure all who know you have been blessed.

I know you're hanging in there, despite such pain and aggravation. Continuing to work and attend events has to be tough. I know you mentioned degenerative disc disease and are hoping it's not something worse. Have you gotten any other test results back? Do you work at the computer a lot? That would affect your neck pain and arm issues. I hope your work isn't demanding so that you can experiment with trying a new position for days to see if that helps.

Do be careful. Even if you can handle great pain, it's not always wise to do so. My surgeon confirmed my back was indeed broken. In his words "The top of your back wasn't even connected to your lower back!" Which is why I had so much grinding pain, numbness that traveled from one foot to the other and loss of bladder control. I just thought it was menopause and old age so I never told anyone those symptoms. Such a dolt I was! I walked around with a broken back for over two months. It's a miracle I didn't suffer permanent damage or paralysis. I would hate for something to happen to you just because you're able to withstand the symptoms. That's such a relief that you have an excellent surgeon. I'm keeping you in prayer, that a really good treatment will be figured out and soon.

scooter950
05-19-2013, 11:51 AM
"Dr English"! what an achievement! and now to face her residency - God bless her! thank you for encouraging her to be committed to life. even with deformities and pain, "life is worth living" and I pray you are coping well between the meds and alternate comfort measures. Graduations are always so imspiring to em- I think we ( family members) get more out of the guest speaker's words than the graduates at times. thanks for sharing such great news!! xxx Jamie in TX

Doodles
05-19-2013, 09:35 PM
Ed--
What a great achievement for your goddaughter! I'm sure you have influenced this young lady in no small way. I truly hope the neck issue can be resolved soon. Janet

loves to skate
05-25-2013, 01:52 PM
Thanks everyone for all the replies.....

Here is a fantastic informative ďneckĒ video from Dr Grossi from Duke. He answers many questions on the neck.....

http://www.youtube.com/watch?v=xFPk4efcJ1g

Ed
Thanks Ed,
I finally had an hour to myself to watch this excellent video.
Also, congratulations to your God daughter. You must be bursting with pride.
How is your neck pain by now. I hope it is much better.
Take care, Sally

titaniumed
05-25-2013, 02:51 PM
How is my neck pain? Iím adapting.....Yesterday, I took no meds.....but there is a little arm pain. Iím used to it.

Crystal is in Puerto Rico hiking with the Coqui frogs in El Yunque. They are noisy little buggers.....you almost need ear plugs.
http://en.wikipedia.org/wiki/El_Yunque_National_Forest

Then its off on a cruise, then back and then another Bahamas cruise.

She was in a hospital working in Thailand last month.

I can figure out her schedule, I cant keep up with her anymore. LOL

I do know that she will start work in Louisville on 07/01/13 here...
http://www.kosairchildrens.com/kosair-childrens-hospital


Ed

JuliaAnn
05-26-2013, 02:25 AM
Ed, I appreciate your updates. The other day my daughter and I were talking about how some people "live large". You are one of those people who live large. Your world isn't small. That is inspiring to me. Thank you.

titaniumed
06-03-2013, 10:08 PM
Well I saw my surgeon today and I donít have any ďextrudingĒ happening......also no stenosis issues at all with plenty of room for the spinal cord and its fluid. It is pushing on the left side of the cord on 2 levels.

I will stay on the diclofenac and if I end up in trouble again, I will schedule a cervical epidural injection......

They tell me it goes in from the front off to the side a bit. Ye-ha.

Has anyone had this done? C5-C6 C6-C7 levels?

Ed

debbei
06-04-2013, 05:32 AM
Well I saw my surgeon today and I donít have any ďextrudingĒ happening......also no stenosis issues at all with plenty of room for the spinal cord and its fluid. It is pushing on the left side of the cord on 2 levels.

I will stay on the diclofenac and if I end up in trouble again, I will schedule a cervical epidural injection......

They tell me it goes in from the front off to the side a bit. Ye-ha.

Has anyone had this done? C5-C6 C6-C7 levels?

Ed

Well that's some good news Ed! is it feeling better now that you were at first? Yikes about that injection! But I guess we've all lived through worse!

JenniferG
06-04-2013, 07:17 AM
Hi Ed, to clarify, what's pushing on the left side of your cord on two levels?

Is this what's causing your pain/numbness?

I hope you don't have to have that injection, but as Debbei says, we've had worse. Good luck!

Susie*Bee
06-04-2013, 08:26 AM
Ed-- my husband had it done at just one level for his bulging disc. He didn't seem like it was anything. I went along as the designated driver... (smile) bug he thought that was silly. It was done in the doctor's office, although I think in a special room. I don't really remember the rest. It's been a couple of years. Jim acted like it wasn't really much, but I'll quiz him.

I'm so glad your news, in general, is quite good.

jackieg412
06-04-2013, 08:33 PM
HI Ed,
I had the injections twice. Both times it was done on my back. The ist inj. lasted around 11 years, The second ones did not help.I say it is worth a try. I was fused later at c5-6-7.Ed try to Pm me as I want to clear something up.Jackie

titaniumed
06-04-2013, 08:56 PM
Jen

Whatís pushing up against my spinal cord are my discs. The discs herniate, the annulus or outer wall gets weak or cracks, and the soft inside nucleus pushes out, AND usually against the spinal cord. This pain can really be intense......ĒPain episodesĒ are when the pain spikes a hard 9 or 10 level when you know something is wrong. This is not an ache, its electrical,burning, nerve related pain.

Living with herniated discs is a DRAG!!!!!!!!!!!!!!!!!!!! and so common even for non scolis. Itís a major problem.

For those that have had herniated discs, they know what Iím talking about. Pain in lumbar discs can create sciatica, which is also devastating. Remember I broke my shoulder before my scoli surgeries and didnít even bother going to the hospital? That will give a good idea of how much pain I was in right before my scoli surgeries. It was way out of control.

My campfire is low right now.....it was hit with 5 gallons of water. The diclofenac after the steroid pack (Methylprednisolone) worked well.

I had a spinal tap in 2002. They use a flouroscope (x-ray) so they can see the spine and guide the stud in. They numb the area locally, and let er rip.

I have had a LOT of shots in my time........big horsey sized ones to the little ones. I even had my eyes ďdrilledĒ by an eye surgeon to remove metal particles in my eyeballs.

I am so used to this stuff now.....bla,bla,bla
You know when you are a child, doctors and dentists can REALLY be scary......Just check the blood pressure and pulse of your 10 year old while sitting in the waiting room....... Jumpy, jumpy, jumpy!.... like revving your car in park at 3000 rpm. All revved up, and no place to go....

Vroom, vroom.

Ed

rohrer01
06-04-2013, 09:33 PM
Ed,
That's good news. At least you don't have to jump right into a cervical fusion. It lets me know what's coming down the road for me, too. My cervical discs have been dry since my 20's. I have a bone spur on C5 growing inward toward my spinal cord, but thankfully it's really small now. Although, I went to an orthopedic surgeon for my shoulder and he said my neck was a mess and thought some of my shoulder and arm problems could be caused by the neck. My shoulder problem is supposedly not supposed to be painful or make my elbow hurt and hand tingle and go numb. I don't know. I just appreciate people like you that share what you go through. For me it's helpful to know in advance what may be coming my way. I'm glad your pain is down. I hope it stays that way. I've had epidurals for the lumbar disc but not for the cervical. Sometimes they work and sometimes they don't. I'm sure you know the drill. You are right about discs going bad and the pain it causes. It's unbearable compared to many of the other things that hurt.

Keep well and take care.

jackieg412
12-07-2013, 06:11 PM
Hi Ed,
I hope you are doing well. your treatment for your cervical ---is it still working? I saw my Dr on Thursday to discuss more upper spine and shoulder blade issues. It appears as if c7-t-1 is the problem. I am already fused c5-6-7. I want to avoid adding on--so I asked for Pt for upper thorasic and I am to go for an evaluation for epidural at c7. I may ask for steroid pack first. What helped you the most? I have been taking diclofenac for 2 months now---helped a little maybe. It did seam to help me more last year than it is now. And this workers comp case just settled a few months ago---but medical remains open until a MSA can be funded. I am back to dealing with ins people. Yikes!

titaniumed
12-08-2013, 01:20 AM
Jackie

My neck has been ok. A little stiff the last few days with these storms passing through, but ok. I have not taken any Diclofenac since my plane trip to South America Aug 3rd. It snowed 20Ē up at Tahoe.

When you have as many levels fused as you do, its not about how many are fused, its about how many are left.....

Your C7-T1 is a critical level for you, I hope you can put this fire out somehow. The PT effort is worth a shot.

We switched insurance policyís last week because HUMANA feels that they deserve a 40% hike. They pulled that stunt last year also. Nice huh? Insurance has been a pain in the neck lately, thatís for sure. (I would have used the other word, but this is a neck thread) In Colombia, full 100% coverage cost $30/mo and most of the docs are trained in the US and speak English. In Mexico, with an FM3, insurance cost even less. We have some serious insurance problems here, no doubt about it. Iím glad I had my surgeries when I did. I guess they have to prepare since all the baby boomers are starting to get expensive. Men also cost more than women after we hit out 50ís. We just get too beat up and fall apart I guess. (smiley face)

Ed

debbei
12-08-2013, 08:39 AM
I'm glad your neck is doing better Ed! I'm so with you on insurance, it just costs a fortune! It sure isn't like 15-20 years ago. I remember paying a $10 copay to have my daughter 14 years ago--that was IT. Now we all have to pay so much between premiums and out of pocket costs.

jackieg412
12-09-2013, 05:58 PM
Hi Ed
Yes insurance is a nightmare.
However, I wished I had the type that offered more flexibitity. I saw the doctor that my surgeon recommended today. This upper thorasic is giving me issues.
I just want very conservitive treatment, I hope to get it approved. I haven't heard one way or the other if I have an approval. The doctor is recommending an epidural
but it may be the hardware. I do not tolerate to many meds well---I like to stay awake!
It is the c-7 t-1 area--doctor said he could extend the fusion---but that is the very LAST thing I want to have done.
So I sit here with heat packs and rest the head down when I have to, That is the only thing that helps.

What is going to happen next year---with health care changes?
I wished that I had this MSA now then I can just pay the bill and be done.

titaniumed
12-10-2013, 02:04 AM
In keeping this as simple as possible and not turning this thread into an insurance thread, (wrong section of forum) Debbe, I would say the the $10 baby days are OVER! Over the long run, its just going to cost more...... Funny how we wondered what $1 gas was going to be like back in 1974, and now we would do anything for $1 per gallon gasoline. Hmmm.....

Jackie, I am so sorry about your neck, and want to say take it easy even though we donít really have full control over degeneration that happens over decades. Its not like I had some sort of incident or crash, and suddenly Iím in a world of major pain. I do know first hand that my bereavement stress contributed heavily to my neck situation. Things are better now in this regard.

I donít have any hilarious Right Said Fred videos to end this post with a laugh, but thatís ok I guess.

Are we adaptable? I think so, after all we keep proving this time and time again....

I will have to try a heat pack on the neck.....Iíve never done that. Sounds like a pretty good idea.

Ed

JenniferG
12-10-2013, 05:43 AM
Hi Ed,

I'm sorry to hear about your neck problems. I thought they'd resolved. I always found heat helped my pain. What are your plans for the future for your neck?

titaniumed
12-10-2013, 08:54 PM
What are your plans for the future for your neck?

Jen, Oh probably get a neck brace. (smiley face)
http://en.wikipedia.org/wiki/Neck_ring

I wonder if any of these people that wear these have herniationís? Its has to be impossible!

My neck is ok right now, it just gets stiff when the winter storms pass through. No biggie....

Ed

jrnyc
12-10-2013, 10:35 PM
just reread this thread...
hope your neck is not torturing you, Ed...
the whole country has been dealing with snowstorm and now
come the plunging temps (to northeast) down to teens at nite,
highs of 20's in daytime...ugh....

i re-read here how Diclofenac helped me...
until i had allergic reaction...not as bad as to Vioxx, thank
goodness...
but no more NSAIDS for me...

the Skelaxin seems to be helping my neck a little...
i am not noticing that it helps anything else...like my spine...

i am going to risk it and have a steroid shot in left hip
tomorrow...using as little steroid material as doctor can...
will see Manhattan pain doc for it...

turns out my hip was not healed...it felt better from the Diclofenac...
soon as i could not longer take that, the hip pain returned...full force...as has all the spinal pain...

crossing fingers the steroid doesn't crash my cortisol again...

jess...and Sparky

jackieg412
12-15-2013, 05:25 PM
HI jess, I hope your shot helped. I have on ordered for c-7--t1. I am waiting for approval. And that may not happen. My insurance for this is through workers comp. They will pay for my spine but not my neck. So is that disc at the top of the spine or the bottom of the neck. I welcome comments on that issue.

Ed that seems to be a question for you. I have started Pt for upper thorasic and hope that workers comp pays for it, they will not pay for neck-- doc wrote the order for upper thorasic--right shoulder blade to help keep it from getting stuck. also to help ROM in neck---so they may not cover. PT is treating shoulder blade issue and once it helps, ROM in neck will improve.Now try to have the insurance company understand that.

susancook
12-15-2013, 08:21 PM
HI jess, I hope your shot helped. I have on ordered for c-7--t1. I am waiting for approval. And that may not happen. My insurance for this is through workers comp. They will pay for my spine but not my neck. So is that disc at the top of the spine or the bottom of the neck. I welcome comments on that issue.

Ed that seems to be a question for you. I have started Pt for upper thorasic and hope that workers comp pays for it, they will not pay for neck-- doc wrote the order for upper thorasic--right shoulder blade to help keep it from getting stuck. also to help ROM in neck---so they may not cover. PT is treating shoulder blade issue and once it helps, ROM in neck will improve.Now try to have the insurance company understand that.

Hi Jackie, I was reading your email and maybe I do not understand what your insurance company pays for. You said that workers comp pays for "spine, but not my neck". Your cervical vertebrae are part of your spine. The spine goes from cervical vertebrae (7) to the sacrum/coccygeal vertebrae (3-5) and in between are the thoracic and lumbar vertebrae. So, if your insurance does cover spinal procedures, they should cover cervical/neck vertebral procedures. Susan

jrnyc
05-21-2014, 12:51 AM
QUESTION
has anyone had steroid injection in the back of the neck...?
just wondering...
sounds a little creepy...but maybe it would work...
just wondering if anyone has tried it...?

jess...and Sparky

mabeckoff
05-21-2014, 02:17 PM
QUESTION
has anyone had steroid injection in the back of the neck...?
just wondering...
sounds a little creepy...but maybe it would work...
just wondering if anyone has tried it...?

jess...and Sparky

Jess, before I came to CA I had steroid injections in the back of my neck.They did nothing for me

jrnyc
05-21-2014, 07:27 PM
too bad the shots didnt help you, Melissa...

i got alot of help from the half dose shot in my left hip....
i am just wondering if an injection in back of neck would
do anything....
i have to be very sparing with any steroid shots, as it drops
my cortisol level down very low...
i guess if i can get a shot at all, i will ask for left hip...
i would hate to "waste" steroids in my body if there is
a chance the shot wouldnt help me....the drug would still
have an effect on my blood, and could drop my adrenal
function, while not giving me pain relief...

probably better to go with an injection site that has worked
before...

jess...and Sparky

rohrer01
05-21-2014, 09:36 PM
Jess,
They talked about it with me.
They said that I would have to see a different kind of specialist to have cervical injections.
I haven't had any. The Botox and trigger points are helping tremendously.

jrnyc
05-22-2014, 03:42 AM
i am so glad those injections help you, rohr.

i get a little help from botox in upper spine...never got any relief from trigger point...
i need to leave as much time between steroid shots as i can
stand....am risking it by having any steroid shots at all...
the half dose shot was in early January i believe...will have them check the date when i go in Wednesday, May 28th...
scheduled for botox in upper spine...would rather get a half steroid shot....doctor will only do one procedure per visit...if i get the botox shots, i will have to wait to next visit with him to get a steroid shot...
then again, that would stretch the time out further...

a Nobel prize in medicine is waiting for the researcher who can create a steroid tx without side effects!

happy Memorial Day wkend to all.
jess...and Sparky