Bad news!!!

[rohrer01]

no, Back Out...really...i had a myleogram a few years ago...gives excellent diagnostic results...and the only bad thing is you MUST lay still for hours afterwards...kinda like a spinal tap...or you will get the dreaded spinal headache!
but it wasnt bad...just a few pinpricks...NO loss of blood....and if i could stand it, believe me others can..cause my mom (and i miss her so much!)put the fear in me many many years ago of having any tests done involving spine! she got the dreaded headache once...really bad! so i was terrified of the test...but it was OK...honestly...

jess

And yes, I was one of the lucky few who got the dreaded headache. They told me NOT to lie flat after the test, then promptly put me in the CT scanner FLAT. It wasn't my fault, they should have done the CT scan first.

[LindaRacine]

I've had a myelogram, CT scans, MRI's, EMG's. I can't think of a test that I haven't had. My myelogram was 25 years ago, though. But the pain was the same kind of pain then that I have now. Every test I've had over the years comes out clean except for some mild degeneration of the neck and last lumbar disk (which I took a steroid injection for). I can't imagine that another myelogram is going to show something new.

Hi...

Not to defend Dr. Tribus, but what can he do when there's nothing obvious to fix? I can truly sympathize with how you must be feeling. It must be incredibly frustrating. I don't know why this sort of thing happens, but it does.

Something you might want to investigate is Reflex Sympathetic Dystrophy and Complex Regional Pain Syndrome. I have a friend who has this as a result of her spine surgery, and it's destroyed her life. (Not to scare the crap out of people... this is very rare. It does, however, point out how serious spine surgery is, and why one never wants to undergo surgery without a really good reason.)

In regards to CT/myelograms, I had one done about 5 years ago. While it's not something I'd want to do on a whim, I didn't think it was painful. And, while I had to stay supine for an hour or two afterward, I didn't have to be completely still. (That sounds like a nightmare Jess!)

--Linda

[jrnyc]

rohr..i fear if you go off all meds, you wont be able to walk...or crawl, for that matter...please be very careful if you do....
i just hope that after the shock of what this doctor did and after you've had time to catch your breath, you will go see another scoli surgeon to get another opinion!!

linda...it was OK...i was soooo terrified of the dreaded headache that i would have laid catatonic if they'd asked me to!!! and yes, that disease syndrome thng you mentioned sounds horrific...especially as a result of having scoli surgery to try to fix things!! i feel so bad that such a thing could happen to any patient!

jess

[Pooka1]

Okay here are some questions I would ask if it were me:

1. Of the orthopedic surgeon - Why do you think the pain is unrelated to the scoliosis? Is there something about the location of the tight curve in the upper thorax that is inconsistent with the particular pain pattern I have?

2. Of the orthopedic surgeon - What other conditions of the spine besides scoliosis can cause this type of pain? Can you rule them in or out at this point?

3. Of the neurosurgeon - How common is it for a patient to have the kind of pain I have and ALSO have a high thoracic curve?

4. Of the neurosurgeon - Are there any surgical approaches that might be expected to lessen the pain I have now?

5. Of the neurosurgeon and a pain specialist - I'd ask about the conditions Linda mentioned.

6. Of the pain specialist - How to I get off these drugs and keep my pain under control?

[rohrer01]

Hi...

Not to defend Dr. Tribus, but what can he do when there's nothing obvious to fix? I can truly sympathize with how you must be feeling. It must be incredibly frustrating. I don't know why this sort of thing happens, but it does.

Something you might want to investigate is Reflex Sympathetic Dystrophy and Complex Regional Pain Syndrome. I have a friend who has this as a result of her spine surgery, and it's destroyed her life. (Not to scare the crap out of people... this is very rare. It does, however, point out how serious spine surgery is, and why one never wants to undergo surgery without a really good reason.)



--Linda

I think a painful, progressing scoliosis IS something to fix. 12 degrees in 5 years I don't think is nothing. Granted it was 6 degrees on each curve. He didn't even look at his own notes and said I hadn't progressed... I'm sorry, I live with scoliosis, as most of us here do. I know too many people with scoliosis for ANYONE to tell me that it is not a painful disease. Not everyone has pain, but a good portion of us do. Just look at the boards... and as someone said, validation IS important. He could have suggested SOMETHING we could try if he didn't want to operate just yet.

I do realize the seriousness of spine surgery and that's how desperate I am for help. If it goes badly and I end up with pain, then that's what it is. I AM in pain already. Linda, I will definitely look up those diseases that you mentioned. Dr. Tribus acted frustrated, too. He honestly must feel that the surgery will cause me more harm. I don't think he realizes the kind of pain I have because he's never seen me in that state. I have very good pain control with my meds, which I'm under the impression that he thinks I don't need. It's just the feeling he gave me. When I told him that I was basically paralyzed from the pain, he said, "You weren't paralyzed." Excuse me, but he wasn't there, and NO I wasn't "literally" paralyzed as in the full sense of the word, but how do you describe something like that to someone?

But thanks, really, for the information.

[rohrer01]

Okay here are some questions I would ask if it were me:

1. Of the orthopedic surgeon - Why do you think the pain is unrelated to the scoliosis? Is there something about the location of the tight curve in the upper thorax that is inconsistent with the particular pain pattern I have?

2. Of the orthopedic surgeon - What other conditions of the spine besides scoliosis can cause this type of pain? Can you rule them in or out at this point?

3. Of the neurosurgeon - How common is it for a patient to have the kind of pain I have and ALSO have a high thoracic curve?

4. Of the neurosurgeon - Are there any surgical approaches that might be expected to lessen the pain I have now?

5. Of the neurosurgeon and a pain specialist - I'd ask about the conditions Linda mentioned.

6. Of the pain specialist - How to I get off these drugs and keep my pain under control?

Sharon, these are all good questions.

1. I did ask and his response over and over is that nothing fit. The nerve pathways don't go that way. Five years ago, he told me that my pain pattern was very typical of scoliosis patients. Last month he said he couldn't believe I didn't have more pain in my "neck" (which now he says is unrelated). He's the one who told me to come back if it got worse. I couldn't get a straight answer out of him.

2. I also asked. He said he had no idea, and asked if I had a GP. So I also asked where do I go from here, my GP sent me to you. His response, "I don't know, but I can't help you. I wish that I could." He suggested a CT scan of my neck to find out why I would have neck pain. DUH??? Wouldn't anyone's neck hurt if it came out of their shoulder girdle at 46*? I have massive muscle on the left and practically none on the right. Isn't that pretty obvious, even to a layman?

3. I did ask of the neurosurgeon in terms of my pain. I didn't specifically mention the high thoracic curve because he was looking at the X-ray. He is convinced that the pain is scoliotic. He said that repeatedly. This isn't some backwoods hospital. He is the head of neurosurgery in one of the nations top 100 hospitals. I think he would know what he is talking about.

4. Of the neurosurgeon. Fix the scoliosis. period.

5. Need to do that, and I WILL.

6. I asked that one, too. His only solution is the intrathecal pump. He had me try PT, what a joke. Sorry the girl was nice but obviously didn't know what she was doing. She didn't even LOOK at my spine before she started applying stretches to my neck. Sent me into one heck of a spasm, enough to make a grown woman cry. Pain doc seem to be fixated on that stupid pump, which, by the way delivers morphine or some other narcotic. I said I would like to be OFF the meds. He says, well that is a noble goal, but unlikely. The pump he says will deliver a much lower dose with more efficacy.

Dr. Tribus acted almost indignant at the idea of a pump. He said that is reserved for after surgeries where people still have pain (which my pain doc obviously doesn't have the skill to do). I never even brought it up, it must have been in some report they sent him. He said he's never heard of treatment without a diagnosis, that I have been getting treated all along with no diagnosis (like since I was a child and given aspirin for my backaches to now with the pain treatment that I am getting). He was kind of hard to follow, to be honest. Maybe he had his mind on a very difficult case down the hall or in the hospital, but it certainly wasn't with me that day.

Thank you for all your help and suggestions.

I'm not quite sure where I'll go from here. If I'll seek out another surgeon - they scare me now because I can say I've had nothing but bad experiences with them - or just try to manage the pain. I can't see how I will ever do that drug free if I can't find the cause of the pain and fix it. I truly believe with all my heart that my crooked spine IS the cause of the pain, but if you can't find someone willing to fix it, you're stuck.

[rohrer01]

Linda,
I looked up those disorders that you mentioned, and it doesn't sound like me. While I have had generalized burning of my skin at times, it has always been in response to an adverse reaction to a medication. For example, I was prescribed tizanidine for my muscle spasms. I was allergic to this medication as my throat swelled. But instead of getting intense "itching" I got intense "burning" all over and especially in my throat. It went away when the drug wore off.

The pain that I am being treated for now is upper thoracic and neck pain that sometimes radiates down my arms, primarily my left all the way to the hand and sometimes my right about halfway to the elbow. I get intense muscle spasms in the ribs that make it hard to breathe. When I lay on my ribs it pushes on my spine and I get pain in the spine and sternum. I would say that my neck and scapular muscle spasms are what is worst right now. It's all around those stupid curves.

Thanks again.

[JenniferG]

I have a friend who has RSD. First she broke her ankle, then she badly broke her upper arm in a second fall. Then she required a hernia operation. The pain in all three areas, didn't diminish. Her arm was operated on three times. Her orthopedic surgeon told her it was all in her mind and she was pretty disgusted. After years of agony and sinking into depression, her GP put her on a drug which is often used for epilepsy, but her son, who is a pharmacist said it's a drug to "re-program the brain". Apparently her brain had not acknowledged that the pain had gone away and she was still feeling it. She began (with trepidation) on a low dose of this drug and persevered through a month of headaches, vomitting, cramps, etc. then they raised the dose and she endured another month of the same. She's 4 months out now, and now she only has a residual stiffness, no pain.

This RSD took many years of her life. It's a ghastly thing.

[LindaRacine]

The pain that I am being treated for now is upper thoracic and neck pain that sometimes radiates down my arms, primarily my left all the way to the hand and sometimes my right about halfway to the elbow. I get intense muscle spasms in the ribs that make it hard to breathe. When I lay on my ribs it pushes on my spine and I get pain in the spine and sternum. I would say that my neck and scapular muscle spasms are what is worst right now. It's all around those stupid curves.

Thanks again.

I think that Dr. Tribus' request for a neck CT is probably valid. I think that the pain you're describing in your arms would be coming from your cervical spine.

While scoliosis can cause pain, as you pointed you, it doesn't do that in everyone. When a surgeon looks at a CT or MRI, they can tell what is causing the pain.

--Linda

[Back-out]

jrnyc and others - thank you for reassuring me about the Myelogram! Wish I had read your comments before getting off a long phone call (Largely because was routed around to so many wrong departments) entirely about this procedure!

I gather if one lies with head elevated while recovering, it does a lot to ward off the dreaded spinal headache. I feel MUCH less twitchy about it now, thanks to you all.
My concerns now are only about:
a) lying on my stomach for any amount of time. Just the opposite way my lumbar and pelvis want to go as I have Flat back.
b) how I'm going to go a full week without NSAIDS on which I depend, Can't even get out of bed until they kick in

Oh well, as my 93yr old aunt keeps telling me to say and think (her mantra) - "This too will pass."

Figure she's a testimony to her survival methods. Still living independently at her age, entertaining and even helping out at the Soup Kitchen!

Thank you all for helping reduce my fear. I guess by now everyone knows how much anxiety and tension, lower our pain threshhold. A little Lamaze breathing should do the trick when they insert that harpoon, I mean, needle .

[rohrer01]

jrnyc and others - thank you for reassuring me about the Myelogram! Wish I had read your comments before getting off a long phone call (Largely because was routed around to so many wrong departments) entirely about this procedure!

I gather if one lies with head elevated while recovering, it does a lot to ward off the dreaded spinal headache. I feel MUCH less twitchy about it now, thanks to you all.
My concerns now are only about:
a) lying on my stomach for any amount of time. Just the opposite way my lumbar and pelvis want to go as I have Flat back.
b) how I'm going to go a full week without NSAIDS on which I depend, Can't even get out of bed until they kick in

Oh well, as my 93yr old aunt keeps telling me to say and think (her mantra) - "This too will pass."

Figure she's a testimony to her survival methods. Still living independently at her age, entertaining and even helping out at the Soup Kitchen!

Thank you all for helping reduce my fear. I guess by now everyone knows how much anxiety and tension, lower our pain threshhold. A little Lamaze breathing should do the trick when they insert that harpoon, I mean, needle .

Mine didn't hurt and I was 16 years old and scared to death. My headache was the fault of the physicians who ordered a CT scan immediately following the procedure.

[rohrer01]

I think that Dr. Tribus' request for a neck CT is probably valid. I think that the pain you're describing in your arms would be coming from your cervical spine.

While scoliosis can cause pain, as you pointed you, it doesn't do that in everyone. When a surgeon looks at a CT or MRI, they can tell what is causing the pain.

--Linda

Yes, I agree. But the T-spine is bent up against the C-spine (where to my knowledge the nerves to your arms come out at). Nerves can easily get pinched, and I know they do, because I can feel it. That is another reason to "straighten it out". If I were stiff all the time, I suppose I wouldn't get pinched nerves. But we are moving and dynamic creatures. The position we are in when they do the tests don't tell the whole story. Just technological shortcomings. I can have the CT scan done closer to home by my neurosurgeon. I hear they give off a TON of radiation, though. Not to keen on that, since we scoli people probably glow in the dark already.
Thanks again!

[Back-out]

rohrer01,

Your suffering comes through loud and clear to me, and I'm sure to all fellow sufferers here. At some point we've all been doubted and probably most of us have had our symptoms and concerns blown off. For the unlucky ones, it's been regarding a serious issue where we had to make ourselves persevere despite - well, condescension and even a sense of ridicule. It's is a special source of pain for you, to have been let down by that one "understanding" doc. That must have been like a punch to the solar plexus!

I have only two pieces of advice and one may not be welcome. I'll try to word it with the greatest of sensitivity since I know you are VERY defensive at this point - and no wonder why!

One (easy) - abt tests (for all I know!):
Twenty five years is a long time, especially if you have some kind of anatomical idiosyncrasy. It may have grown or changed. How about trying another myelogram?

Likewise, I can't believe that a cervical MRI (with contrast) isn't revealing something. Same with a thoracic one - maybe even lumbar, as referred pain can be deceptive. Depends a lot on your insurance co.

FYI The Cleveland Clinic will give second opinions (in any department as far as I know) for a flat fee of $250. I'd give that a whirl but not without carefully screening your doctors' reports and office notes first (you have a legal right to see them) . They'll charge you a lot per page, but it's worth it to protect your reputation and increase your chance of being seen afresh. Just be specific about what you want copied. To save money, you can also ask to read them first (on site), and narrow down to what you feel is unfair (and in need of changing).

TBC

[JenM]

Hi Roher01-

I can totally relate to the pain you are feeling in your neck. I have scoliosis and my curves are 55 and 58 degrees. I also found out from my surgeon that I have kyphosis of 68 degrees, which I never knew I had. I also suffer from tingling and numbness that is in my shoulder, goes down through my elbow and into my pinky finger and ring finger. I've had that pain now for almost 2 years. It is soo annoying and at times unbearable. The EMG shows that I don't have any damage to the nerves, which was very aggravating to hear since it is very painful. I totally believe it is related to the scoliosis. My MRI of my cervical spine shows degeneration and a disc protrusion. I believe that this pain in my neck is caused from my kyphosis, which causes me to lean forward and not stand up straight. I am only 31 years old so my neck shouldn't be that bad. Anyway, I told my surgeon in November about the neck/arm/hand pain. I believe he said the pain may go away after having the scoliosis surgery, but if not to have cervical epidural injections after the surgery. I am having surgery June 8th so I can't wait to see if the pain goes away, I'm hoping it does!!! I also have to say that the chiropractor has done wonders for my neck pain/arm and hand pain. The tingling/numbness/painful burning has lessened by about 50%.

Anyway, just wanted to send this message to you as I feel your pain. Before I met my surgeon in November, I went to a NYC neurologist out of NYU who told me that scoliosis does NOT cause pain. I walked out in tears. He told me that I should live with scoliosis and not get the surgery. He made me feel as if the pain was all in my head! That was the turning point where I said to myself I have to have the surgery!

If I were you, I'd get a 2nd and 3rd opinion. Good luck and let us know how you do.

By the way, I was wondering if you also have kyphosis in addition to the scoliosis.

Take care,
JenM

[rohrer01]

rohrer01,

Your suffering comes through loud and clear to me, and I'm sure to all fellow sufferers here. At some point we've all been doubted and probably most of us have had our symptoms and concerns blown off at some point. For the unlucky ones, it's been regarding a serious issue where we had to make ourselves persevere despite - well, condescension and even a sense if ridicule. It's is a special source of pain for you, to have been let down by that one "understanding" doc. That must have been like a punch to the solar plexus!

I have only two pieces of advice and one may not be welcome. I'll try to word it with the greatest of sensitivity since I know you are VERY defensive at this point - and no wonder why!

Simpl (simple one - abt test, for all I know!): Twenty five years is a long time, especially if you have some kind of anatomical idiosyncrasy. It may have grown or changed. How about trying another myelogram?

Likewise, I can't believe that a cervical MRI (with contrast) isn't revealing something. Likewise, a thoracic one - maybe even lumbar, as referred pain can be deceptive. Depends a lot on your insurance co.

FYI The Cleveland Clinic will give second opinions (in any department as far as I know) for a flat fee of $250. I'd give that a whirl but not without carefully screening your doctors' reports and office notes first (you have a legal right to see them) . They'll charge you a lot per page, but it's worth it to protect your reputation and increase your chance of being seen afresh. Just be specific about what you want copies. To save money, you can also ask to read them first (on site), and narrow down to what you feel is unfair (and in need of changing).

TBC

Thanks, not so much defensive as frustrated. I think a bunch of new test will probably be in order. A melogram 25 years ago is a long time. Dr. Tribus thinks CT scans are better at picking up minute things better than MRI's. He suggested a lumbar CT scan the last time I saw him, as I had lumbar pain. My doctor ordered a lumbar MRI, which showed a pinched nerve that I was able to get an epidural injection for. It has helped a lot. So one source of pain down, now to figure out the thoracic and cervical pain. I will submit to as many tests as they want to put me through, I'm not against that. It's just the contradiciton of yes, you have scoliotic pain, then NO you don't fit the bill. I would probably have to have all of those tests and then some before I had any kind of surgery anyway. But you're right, it was like a gut punch. I now feel like I have no where to turn for help. Thank you for considering my feelings on this matter. This forum is a nice place to be right now. The suggestions are great, and I need the empathy of others right now. I'm just having a pitty party again. I'll get back up on my feet and fight this. I just don't know what the enemy is, if not scoliosis. I don't want to let my disease or my pain define who I am. I kind of feel like that's what I've reduced myself to the last couple of days.
Thanks again ((((HUGS))))