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rohrer01
04-26-2010, 05:33 PM
I had my appointment with my scoli doc today. He totally did an about face on me and told me that NONE of my pain fit with scoliosis. The last two times I saw him was just the opposite. Last month he told me that he was surprised that my neck didn't hurt worse because of where my curve is and I am using so much energy just to hold my head up. He told me if it gets worse to come back and see him and that pain was definitely an indication for surgery. He just wanted to make sure that I would get at least an 80% improvement in pain when we were done. He said that I would most likely need hardware removal surgery after the fusion. So my pain is bad enough to send me to the ER, unable to barely move. I was having muscle spasms so bad I could barely breathe. I get severe cramping in my scapular area, pain in my bones of upper spine and neck. He says it's completely UNRELATED to my scoliosis and won't do the surgery. He said if I had a 60* curve he would do it. Mine is 46* which, he told me last month, was in the surgical gray area, but doable depending on how much pain I am in.
I am on heavy narcotics and can't even sleep through the night because of pain. I had to get a new bed, so I have to sleep separate from my dear hubby to get any comfort. I just don't see how he can say that this is unrelated to my scoliosis. Until now, he was the only scoli doctor that believed me. I don't know where to go or what to do. I started crying right there in his office. He didn't have any advice on where to turn. I'm totally at a loss. I don't have the money to travel around the country looking for a doctor that believes me. He thinks I just have some sort of pain syndrome or something. He said he didn't want to label me, which made me think that he thought it was all in my head. I made it CLEAR to him that I did NOT want to be on all the meds I'm on and that I was desperate to try anything, even going through surgery to get some help. He just said he was sorry he couldn't help me and left me in the room crying. I am SO devastated!
:(

jrnyc
04-26-2010, 05:45 PM
oh my gosh, rohr...it is so awful when doctors do an about face on patients...have had it happen to me, though not with my scoli....
i dont remember what part of the country you live in.... .....and i understand that you cant go running around the country visiting doctors...but you have got to go see somebody else...at least one other doctor...
do you have disc disease, spinal stenosis, arthritis...other things contributing to the scoli pain...i dont for one minute believe any doctors who claim that scoli doesnt hurt...let them try living with twisted body structures and then tell us what hurts! they tried to tell me Lyme disease doesnt hurt, too...back when the ignorance on it abounded!! scoli causes curves that shouldnt be there...therefore, it will cause pain...and other bad things to happen to the back eventually, like disc disease....

what is the situation with your pain doctor...? can you get botox shots for the muscle spasms the way i do every 3-4 months....?

please find another scoli surgeon to consult with...most people want more than one opinion anyway!

hang in there...you will find a doctor who will help you!

jess

lray
04-26-2010, 05:55 PM
I'm so sorry to hear of your disappointment. Why would he do an about-face like that? :mad: You should definitely seek out another specialist. I hope that you can find one very soon.

rohrer01
04-26-2010, 06:58 PM
He is the ONLY one in the state where I live, Wisconsin. I really don't know what happened. He went from being so understanding to making me feel like a drug addict. He said I had three separate problems 1)a pain problem, 2) a drug problem, and 3) scoliosis. Does he think I'm a drug seeker or what? I have NEVER even hinted at a prescription from him. I only want help with my scoliosis. Or, am I misunderstanding him that I have a problem taking drugs. He talked about the vicious drug cycle and I explained that I was well aware of that and that's why I wanted OFF of them and hoped the surgery would help. I just don't understand that having that much pain in the same AREA as my scoliosis can be dismissed as unrelated. I'm the one that LIVES in this body and I know how it feels. I haven't been able to stop crying all afternoon. I feel not only let down, but humiliated at the same time. He didn't even offer any suggestions as to where to turn for help. He said to maybe look up some diseases. I told him that if I go applying diseases to myself I would be turning myself into a hypochondriac! He said, "I like your attitude about that." Geez, thanks! Does he think the pain is all in my head? I told him if I lay on my side my ribs hurt and put pressure on my spine and make it hurt. My left arm goes numb on the side where my neck hurts worst, by the apex of my curve. Nope, unrelated.

I got in touch with my GP's nurse right away and my GP himself gave me a call and assured me we would talk about it on Thursday when I see him. I also called my neurosurgeon's nurse, who promptly called me back AFTER hours to let me know they were right on it and would be in touch with me later this week. I really don't know what any of them can do, as they don't have the qualifications to help me surgically. I can't imagine my insurance approving a visit to an out of state doctor, especially after the hard time they gave me just to go see this guy. And I really liked him, too. :( Sorry, I'm just so sad and frustrated....

Thanks for all your support.

chickatey
04-26-2010, 07:04 PM
I'm so sorry to hear about your experience! I'm in a similar situation of having a 50 degree curve and excruciating pain. The orthopedic surgeon I saw last week wouldn't give me any pain treatment at all, didn't want to do surgery and said that "people with scoliosis are no more likely to have back pain than the average person." I'm so tired of hearing that! I really hope that your GP is able to help you and that your surgeon will be more understanding next time...I'm sorry that I don't have any advice, but I very much feel your pain :(.

debbei
04-26-2010, 07:37 PM
He is the ONLY one in the state where I live, Wisconsin. I really don't know what happened. He went from being so understanding to making me feel like a drug addict. He said I had three separate problems 1)a pain problem, 2) a drug problem, and 3) scoliosis. Does he think I'm a drug seeker or what? I have NEVER even hinted at a prescription from him. I only want help with my scoliosis. Or, am I misunderstanding him that I have a problem taking drugs. He talked about the vicious drug cycle and I explained that I was well aware of that and that's why I wanted OFF of them and hoped the surgery would help. I just don't understand that having that much pain in the same AREA as my scoliosis can be dismissed as unrelated. I'm the one that LIVES in this body and I know how it feels. I haven't been able to stop crying all afternoon. I feel not only let down, but humiliated at the same time. He didn't even offer any suggestions as to where to turn for help. He said to maybe look up some diseases. I told him that if I go applying diseases to myself I would be turning myself into a hypochondriac! He said, "I like your attitude about that." Geez, thanks! Does he think the pain is all in my head? I told him if I lay on my side my ribs hurt and put pressure on my spine and make it hurt. My left arm goes numb on the side where my neck hurts worst, by the apex of my curve. Nope, unrelated.

I got in touch with my GP's nurse right away and my GP himself gave me a call and assured me we would talk about it on Thursday when I see him. I also called my neurosurgeon's nurse, who promptly called me back AFTER hours to let me know they were right on it and would be in touch with me later this week. I really don't know what any of them can do, as they don't have the qualifications to help me surgically. I can't imagine my insurance approving a visit to an out of state doctor, especially after the hard time they gave me just to go see this guy. And I really liked him, too. :( Sorry, I'm just so sad and frustrated....

Thanks for all your support.

Hi,
go to http://www.srs.org/find/ and you will find half a dozen surgeons in your state. I recognize one of them in particular that was used by another woman on the forum a year or so ago. If I were you, I'd even go out of network to see one of these guys for a consultation.

rohrer01
04-26-2010, 10:08 PM
Hi,
go to http://www.srs.org/find/ and you will find half a dozen surgeons in your state. I recognize one of them in particular that was used by another woman on the forum a year or so ago. If I were you, I'd even go out of network to see one of these guys for a consultation.

That is odd, because when I did that before, Dr. Tribus was the ONLY one that came up for adult scoliosis. I see that there are two others now. Thank you. Dr. Tribus is out of network for me. I had to fight tooth and nail to see him. He was so understanding the first time I saw him and said that my pain episodes were very typical of scoliosis patients. Even last month he told me that he couldn't believe my neck didn't hurt worse. Now today, a whole different Dr. Tribus. I don't know what happened. No compassion, didn't want to listen,.... maybe he just came from seeing someone with a 110* curve in the next room and here I am with my measly 46* and thought what is she doing here? Who knows. I do know for a FACT that he didn't look at my chart because he said, "You're not even progressing." I corrected him and said, "yes I am. You told me so." He looked again and acknowledged that indeed I had progressed. I guess everyone is entitiled to a bad day. But I don't want someone having a bad day doing surgery on me anyway. Thanks again. Maybe my neurosurgeon will refer me to one of these other doctors for a second opinion.

lray
04-26-2010, 10:49 PM
I guess everyone is entitiled to a bad day. But I don't want someone having a bad day doing surgery on me anyway.

That says it all...time to see another specialist. I wish you the best!

rohrer01
04-26-2010, 10:53 PM
That says it all...time to see another specialist. I wish you the best!

I suppose it does. :) Makes me feel better. But I really did like him.:confused:

rohrer01
04-26-2010, 10:57 PM
Maybe I should start going back to the chiropractor so I can reach the magical 50* sooner. Isn't that aweful!:rolleyes:

LindaRacine
04-26-2010, 11:49 PM
Is this Dr. Tribus?

Back-out
04-27-2010, 12:30 AM
I'm so so sorry to hear of your terribile experience. As if being in such pain weren't enough. Like jrnyc I've had similar experiences though not about my spine and have friends who have too - only to get a "legitimate" diagnosis in the end after nearly being driven mad. One had fibromyalgia, one chronic fatigue syndrome, one Lyme's. I had severe pain in my breast which was roundly dismissed - until it started to bleed! :( (it was benign, though it took a good bit of exploration, including surgery. to tease out the diagnoses)

It's extra hurtful that it came from the one MD you had trusted and who had given you hope. Sometimes patients really need validation as much as relief!

Don't give up. Your pain is real and has a cause. He is an amateur psychiatrist and that's NOT his expertise. (Speaking as someone trained as a psychologist) Doctors feel inadequate when they can't solve problems and rather than say, "I don't know" they blame the patient and almost invariably end up saying it's "all in your head" rather than admit their limits.

I had minimally invasive surgery on my cervical spine for severe spinal stenosis. I had scarcely any pain but some have quite a lot. It can only be diagnosed by MRI. Have you had one? Likewise, I'm supposed to have a test which is especially designed to tell where pain is coming from - a myelogram, perhaps. (What a great help I am without the name! Sorry!) It's not fun (there's blood loss involved) but as I understand it they go vertebra by vertebra, checking. Another thought.

I feel angry with your MDeity now! :mad:

PS I just googled the test and here's a link. God, it sounds awful. Now I feel really queasy. It does sound like it might be indicated for you too, though. I'm sure it would be a blessing to locate the cause of your pain despite the discomfort.

http://www.spineuniverse.com/exams-tests/myelography-myelogram

jrnyc
04-27-2010, 07:03 AM
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

rohrer01
04-27-2010, 10:08 AM
Is this Dr. Tribus?

Yes, he has been so understanding until yesterday. HE'S the one who told me to come back if my upper back and neck symptoms got worse. So I did, and this is how he treated me.

rohrer01
04-27-2010, 10:33 AM
I'm so so sorry to hear of your terribile experience. As if being in such pain weren't enough. Like jrnyc I've had similar experiences though not about my spine and have friends who have too - only to get a "legitimate" diagnosis in the end after nearly being driven mad. One had fibromyalgia, one chronic fatigue syndrome, one Lyme's. I had severe pain in my breast which was roundly dismissed - until it started to bleed! :( (it was benign, though it took a good bit of exploration, including surgery. to tease out the diagnoses)

It's extra hurtful that it came from the one MD you had trusted and who had given you hope. Sometimes patients really need validation as much as relief!

Don't give up. Your pain is real and has a cause. He is an amateur psychiatrist and that's NOT his expertise. (Speaking as someone trained as a psychologist) Doctors feel inadequate when they can't solve problems and rather than say, "I don't know" they blame the patient and almost invariably end up saying it's "all in your head" rather than admit their limits.

I had minimally invasive surgery on my cervical spine for severe spinal stenosis. I had scarcely any pain but some have quite a lot. It can only be diagnosed by MRI. Have you had one? Likewise, I'm supposed to have a test which is especially designed to tell where pain is coming from - a myelogram, perhaps. (What a great help I am without the name! Sorry!) It's not fun (there's blood loss involved) but as I understand it they go vertebra by vertebra, checking. Another thought.

I feel angry with your MDeity now! :mad:

PS I just googled the test and here's a link. God, it sounds awful. Now I feel really queasy. It does sound like it might be indicated for you too, though. I'm sure it would be a blessing to locate the cause of your pain despite the discomfort.

http://www.spineuniverse.com/exams-tests/myelography-myelogram

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. When I had it the first time I had an enlarged nerve root opening at C7, so they were fearful of a tumor and I was having weird nervy sensations down my left arm and twitching in my right hand. I still have all that, only now I get pain down my left arm and actual numbness when I lay in certain positions for very long. Sometimes all I have to do is turn my head to cause it. I can actually at times during a neck flare up put my head down toward my chest and my left thumb will contract. I told them this last time.

He mentioned something about fibromyalgia, and I said I asked my GP about that because it runs in the family, but that it was my understanding that this diagnosis is just a name for "unknown pain" and he said YES that's what I think, too. But what he wouldn't even seem to listen to is that MY pain surrounds EVERYwhere around my scoliosis. My spine even hurts to touch sometimes. It was tenter around T1/T2 dudring the exam. My scoliosis it from T2 - T6 and 46* there. You can't tell me that doesn't affect the neck! And my neck pain wasn't related to the scoliosis. Excuse me? Last month he said he was surprised my neck didn't hurt WORSE because of how high and tight my curve is! He said people with scoliosis don't get muscle spasms in their ribs that make it hard to breathe. Sometimes I can fell my ribs 'pop' over each other. Kind of gross, I know. But hey, it's not scoli, right?:rolleyes:

Oh well. all the crying I did last night gave me the best nights sleep I've had for years. I slept for 6 hours straight, then another 3. That NEVER happens. I'm just so emotionally exhausted. I told my husband that I should just quit all the meds and see what happens. If I can't move around too well, then so be it. Long term narcotics are killers. They use morphine so speed up "the end" in old people. I know, I've worked in health care. It's legal euthanasia because it's considered palliative care.

I'm just blown away by the about face. I would believe another cause of the pain if my pain wasn't so much in the area of the scoliosis. And like I said, he didn't even look at my chart.

rohrer01
04-27-2010, 10:35 AM
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
04-27-2010, 11:34 AM
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
04-27-2010, 12:18 PM
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!!! :rolleyes: 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
04-27-2010, 01:52 PM
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
04-27-2010, 03:04 PM
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...:confused: 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
04-27-2010, 03:28 PM
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
04-27-2010, 03:47 PM
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. :confused:

Thanks again.:)

JenniferG
04-27-2010, 05:01 PM
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
04-27-2010, 05:23 PM
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. :confused:

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
04-27-2010, 05:25 PM
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 :p.

rohrer01
04-27-2010, 05:39 PM
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 :p.

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

rohrer01
04-27-2010, 05:44 PM
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
04-27-2010, 05:51 PM
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
04-27-2010, 05:58 PM
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
04-27-2010, 06:03 PM
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))))

Back-out
04-27-2010, 06:30 PM
Pt II - more delicate,

decided to send it in PM.

chickatey
04-27-2010, 07:52 PM
I'm very much sympathizing with your situation, rohrer. Your pain pattern sounds very similar to mine in the thoracic region- spasms, radiating down the left arm, cervical pain as well. My curve is around the same size as yours. I don't have the lumbar pain issue though.

Odd that your doctor had such an about face...very frustrating. I hope you can find another physician that is more compassionate and a good problem solver. I also feel that it seems like a no brainer that the pain is scoli related.

Pooka, those questions you shared were very helpful. I have noted them to ask at my next appointments, as I am in a similar situation of having upper left thoracic pain that my scoliosis doctor dismissed as unrelated to the curve.

Pooka1
04-27-2010, 07:55 PM
Here's some thoughts on Tribus which occurred to me...

1. Your curve is progressing but not very quickly. Your lumbar is almost certainly compensatory so the increase in that is not really on the radar. The surgeon never told me the Cobb angle on the lumbar compensatory curves of my two daughters because they were not structural and indeed almost completely disappeared when the top curve was straightened. Since you are still technically sub-surgical, I think if something went wrong, he might be on the hook for the decision to operate because you are not progressing quickly and because you are sub-surgical. He really can't ever be on the hook for not addressing your pain.

2. It seems like you have multiple pain issues and the ones dealing with your arms and neck are definitely not related to your thoracic curve. That is a big indicator not to operate in the mind of Tribus I'm guessing. Now you seem to have very real, very serious neck issues that should be addressed APART from the thoracic curve. That might be the area of the neurosurgeon and the pain doctor.

3. Tribus may have a file drawer of where he operated on high thoracic curves with pain wherein most people did NOT get the pain relief they desperately sought from the fusion. That could be a BIG reason why he is dissuading you from surgery. You might need to go to someone with many high T curve fusions under their belt with a good track record. I bet Boachie fits this bill. I would at least get an opinion from him.

Good luck.

foofer
04-27-2010, 08:19 PM
Hello Rohrer1,

First of all, my profound sympathy and empathy for your pain, your frustration, and your confusion. My hope is that at some point, hopefully soon, more light will be shined upon your doctor's change of tune, and you will feel better about what occurred.

I have no suggestions or solutions but thought I would share my own mini-journey in the world of painful necks. Sometimes when I read others' stories, something will resound with me, a click in the moment, and I can make a small change that over time will have a beneficial effect. I've had scoliosis all my life, and most of the time I get by pretty fine but through the years I've had various episodes, various epochs and evolutions of pain. Always went to chiropracters, bodyworkers, massage therapists, etc. Sometimes it helped, sometimes it made it worse, but I've been amazed at the way my body has had this travelling pain, never staying in one spot for more than several months or so.

My worst trouble has been with my neck. A few years ago, probably early 2007, I was really being challenged with left shoulder pain, scapular pain, numbness, arm tingling and aching. My scoli is s shaped with a beautiful mountain on my upper right side, so I guess the upper left side muscles are struggling to try to hold the elevation on the right from increasing. I started going to phys therapy and thought I was making some progress after going for a few months, weekly. Then my fitness ball that I sat on at work exploded and I hit the ground really hard. I felt the impact of it in my neck and could not move for a couple days. I went to my back doctor and have degenerative discs c5, c6, some narrowing and bone spurs, and slight kyphosis. This was all in mid 2007. So I did physical therapy a couple times a week for about a year. This accident was a major setback for my neck issues. I have a great PT who I met during this time. I knew right away that I would be going to him for a long time. He just had the right touch and the right instincts about what I could handle. But it has taken a long time, a lot of home exercises, a lot of conscious relaxation in my upper body, especially the trapezoid muscles. I have discovered that I raise and slightly or greatly tense my shoulders when I sit and work, and I think it's because I am trying to "get away, make some room" from all the compaction just below. One of my personal solutions is to relax my shoulders, let them drop- have to remind myself constantly. If my shoulders are up by my ears, I will have a headache tomorrow.

When I would go back to the ortho for follow-ups, my Colorado doctor, who was also following my scoli, would tell me that he was not worried about my neck- I could fall down a flight of stairs and no problem. He also was telling me at that time that I absolutely need scoliosis surgery and soon. So yes on the back and no on the neck. This was all in 2008.

When I went to see Dr. Boachie in early 2009, he was not advocating surgery anywhere for me as my back does not cause heinous pain, only moderate to serious pain. The last time I saw him I told him that my main problem was still with my upper left side, my neck, arm, and all this causing major headaches. I tell people that it gets so all-encompassing that I get almost high from it, like foggy high- it takes up so much room in my brain. I sometimes feel it in my left cheek and eye. Dr B went over , looked closer at my x-ray, and said it was all coming from my neck and scoli surgery would not affect my pain from there. I didn't ask him what would alleviate neck pain. Maybe neck surgery would. Since then with PT, as well as more back pain on the right side where I have not felt it in 10 years, the neck issues have calmed down. I have this personal theory that when pain leaves an area, another area or body part stands up to be counted.

With physical therapy, my experience has been that it takes a long time and a lot of work. I think you have posted that you have been there, done that, but just maybe, maybe, maybe, don't get mad at me, maybe a new PT. Sometimes my PT does nothing but easy massage, some special kind. I like traction units. You will often find me at home with my head hanging over the end of the bed. I often type at night with my microwaved red velvet psyllium husk filled wrap around my neck. I can also put it in the freezer- some days that feels good too. Then a scalding bath. Then try to sleep.

Everyone is different. I do not have kyphosis in my thoracic, like Jenm. My thoracic scoli is apexed at mid-scapula level. Sounds like yours is higher. My neck is not tilted. I don't need to take narcotic pain meds, as I do not get muscle spasms, just the constant dull aching and tightness plus headaches, now diminished considerably. So there may be no parallels at all.

I hope you feel more hopeful tomorrow and that solutions will arise out of this particularly difficult episode. Maybe your painful days now will help a multitude of future forum-seekers and you will be posting your PAST experiences with your pain. I dearly hope so.

Amy

rohrer01
04-27-2010, 10:34 PM
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

Thank you for your words of encouragement. It is all too frustrating for those of us with pain/neurologic symptoms to hear that scoliosis isn't involved. I've had EMG's too that basically come up normal (slight touch of carple tunnel). BUT... I know when I put my head down and my left hand contracts that there is a nerve getting pinched. I don't care what the test says. I'm glad you found someone to help you. If my scoli were at least 50*, I wouldn't be having so much trouble finding help. Only 4* to go. I do not have kyphosis. In fact to look at me sideways in the X-ray, I am too straight. We all should have a certain amount of "normal" kyphosis in our upper spine and my back is flat up there. I'm wondering if that could contribute, who knows? I will be in touch with my GP on Thursday and my neurosurgeon soon, so I will be asking them LOTS of questions. Best wishes for your upcoming surgery. I hope things get better for you!:)

rohrer01
04-27-2010, 11:09 PM
Here's some thoughts on Tribus which occurred to me...

1. Your curve is progressing but not very quickly. Your lumbar is almost certainly compensatory so the increase in that is not really on the radar. The surgeon never told me the Cobb angle on the lumbar compensatory curves of my two daughters because they were not structural and indeed almost completely disappeared when the top curve was straightened. Since you are still technically sub-surgical, I think if something went wrong, he might be on the hook for the decision to operate because you are not progressing quickly and because you are sub-surgical. He really can't ever be on the hook for not addressing your pain.

2. It seems like you have multiple pain issues and the ones dealing with your arms and neck are definitely not related to your thoracic curve. That is a big indicator not to operate in the mind of Tribus I'm guessing. Now you seem to have very real, very serious neck issues that should be addressed APART from the thoracic curve. That might be the area of the neurosurgeon and the pain doctor.

3. Tribus may have a file drawer of where he operated on high thoracic curves with pain wherein most people did NOT get the pain relief they desperately sought from the fusion. That could be a BIG reason why he is dissuading you from surgery. You might need to go to someone with many high T curve fusions under their belt with a good track record. I bet Boachie fits this bill. I would at least get an opinion from him.

Good luck.

Sharon, those are some very good thoughts to consider. Since my thoracic curve is so high, I technically do have a cervical compensatory curve that they do not measure. This is where I believe the nerve pinching is happening. I had MILD disk degeneration in the c-spine on MRI 12 years ago. I'm sure that has progressed at least some since my neck is crooked. I'm sure the disks are being put to work much harder because of the thoracic curve. I agree, that if he hasn't had success with high curves, he's not the one I want doing surgery. I also realize that my curve is sub-surgical, but barely. When there is pain involved it can be justified, even Dr. Tribus told me that.

I don't know how rapidly my curve is progressing. I don't know if the chiropractic visits are what caused it to start moving. If so, 6* would be in one year, not five. That is a bit more significant. I need to get the chiropractor to measure those cobb angles, but I'm not sure she knows how, as I've asked her to do it before and she didn't.

Where is Boachie? I doubt that I could ever afford him. We are pretty poor, especially now with all the medical bill piling up. I'm sure I could NOT convince my insurance to pay out of network again.

As far as my lumbar spine. Dr. Tribus was correct in that it was a separate issue. A little epidural shot took care of the problem. I have a slightly bulging L5-S1 disk with what looked on the MRI as very little nerve pinching on the left. The neurosurgeon thought it was too minimal to be causing the pain it was. The pain doctor disagreed and was actually right. I got a LOT of relief from that shot.

Another thought could also be that 25 years ago, when I was first diagnosed, I was having similar symptoms and maybe it was of something that was too small that it was not yet detectable. I had, at that time, an enlarged C7 nerve root opening. So, of course they thought I had a tumor. Well a lot can happen in 25 years. Maybe it is worth repeating the tests.

As far as the muscle spasms go, I don't know what else could be causing them. They happen all around the region of the curve. My ribs are pretty distorted and stick out quite far in front (almost as far as my breast - sorry if TMI). The ribs on the other side form kind of a dip and they are pretty much crunched up. I think I get intercostal muscle spasms when the ribs get irritated either from sudden movement (like my last incident) or from too much pressure laying on my side, thus the new bed.

I guess if I were a normal person I wouldn't complain too much. My doctors keep me very comfortable. I feel "normal" on the meds they have me on most of the time. It's just I don't want to take medicine all of the time. I want another baby and don't want to hurt the child. Maybe I'm just selfish.

I also know from experience that these drugs will eventually quit working and I am of the mindset to fix the problem rather than just cover it up, no matter what it is. Maybe I just have to get it through my head that some problems just can't be fixed. I truly believe that Dr. Tribus felt bad that he couldn't help me. He really believes that the surgery would cause me more pain, and I can't be mad at him for that. It's just the about face that really caught me off guard, because he flat out told me my symptoms were typical of scoliosis.

Maybe I do have an unrelated pain disorder that presents itself around the scoliosis because that is where my body is vulnerable. If that is the case, surgery won't help because my body will still see itself as vulnerable in that area BECAUSE of the surgery. I don't know. I will keep you all posted as to what I find out.

((((HUGS)))) .... I'm giving lot's of hugs today!:)

tiona24
04-27-2010, 11:12 PM
Sounds like Dr. Tribus in Madison, I saw him yesterday for the third time over the last ten years, he was very unsympathetic, had no recommendations and left me in the room crying. I am convinced he had no interest in helping me.

I had surgery when I was 16 at the university of Minnesota, and my doctor retired and had recommended Dr. Tribus. My little sister also has Scoli, and we will not be going back to him.

I know of someone who just had surgery in Milwaukee that my mother knows, its sounds as if it went well. My mom thinks it was at childrens hospital.

If you are in northern Wisconsin, you may want to research Mayo or Minn., if you can find a good doctor, it's worth the trip.

Good luck to you, I am sorry that happened.

titaniumed
04-27-2010, 11:15 PM
It doesnít look like he felt that he could help you. It would be best to just move on with your scoliosis journey, and eventually the pieces of the puzzle will come together. It still doesnít mean that he wont operate on you, I know this as my surgeon didnít want to work on me, and I basically had to convince him to do it. That was a 2 year timeframe. Sometimes, they just want to watch and wait. Surgeons donít like failure. At all.

I've seen a few Doctors and Surgeons in my time and have had many different types of reactions...My surgeon not only does scoliosis, but he also specializes in the neck. My Chiro called me to ask how I was doing the other day, and I have not had any more neck problems.

Do you have a coronal x-ray of your neck you could post? I ask this because I knew a girl almost 30 years ago who had quite a neck. Her pain was extreme.
She had 2 S curves, that started way up high like yours. I donít know what happened to her.

Be sure and let us know what happens. The "surgeon interview" process is always different with each of us.
Ed

rohrer01
04-27-2010, 11:41 PM
Hello Rohrer1,

First of all, my profound sympathy and empathy for your pain, your frustration, and your confusion. My hope is that at some point, hopefully soon, more light will be shined upon your doctor's change of tune, and you will feel better about what occurred.


My worst trouble has been with my neck. A few years ago, probably early 2007, I was really being challenged with left shoulder pain, scapular pain, numbness, arm tingling and aching. My scoli is s shaped with a beautiful mountain on my upper right side, so I guess the upper left side muscles are struggling to try to hold the elevation on the right from increasing. I started going to phys therapy and thought I was making some progress after going for a few months, weekly. Then my fitness ball that I sat on at work exploded and I hit the ground really hard. I felt the impact of it in my neck and could not move for a couple days. I went to my back doctor and have degenerative discs c5, c6, some narrowing and bone spurs, and slight kyphosis. This was all in mid 2007. So I did physical therapy a couple times a week for about a year. This accident was a major setback for my neck issues. I have a great PT who I met during this time. I knew right away that I would be going to him for a long time. He just had the right touch and the right instincts about what I could handle. But it has taken a long time, a lot of home exercises, a lot of conscious relaxation in my upper body, especially the trapezoid muscles. I have discovered that I raise and slightly or greatly tense my shoulders when I sit and work, and I think it's because I am trying to "get away, make some room" from all the compaction just below. One of my personal solutions is to relax my shoulders, let them drop- have to remind myself constantly. If my shoulders are up by my ears, I will have a headache tomorrow.


With physical therapy, my experience has been that it takes a long time and a lot of work. I think you have posted that you have been there, done that, but just maybe, maybe, maybe, don't get mad at me, maybe a new PT. Sometimes my PT does nothing but easy massage, some special kind. I like traction units. You will often find me at home with my head hanging over the end of the bed. I often type at night with my microwaved red velvet psyllium husk filled wrap around my neck. I can also put it in the freezer- some days that feels good too. Then a scalding bath. Then try to sleep.


I hope you feel more hopeful tomorrow and that solutions will arise out of this particularly difficult episode. Maybe your painful days now will help a multitude of future forum-seekers and you will be posting your PAST experiences with your pain. I dearly hope so.

Amy

So YOU are the one with the exploding ball!!! I actually LOVED sitting on the fitness ball when my daughter was pregnant. I bought one for both of us to help her with birthing and we would "practice". I found that very comfortable, more so that a chair or couch. I am always afraid they will explode, though. I don't want to land on the pin, so I would make sure it was somewhere harmless. I haven't used it since she had the baby. Maybe I should try it again...?

I actually did give PT another chance. I had a terrible migraine headache when I went to her the first time. She showed my husband how to put me in cervical traction (I used to have an over-the-bed unit) and some pressure points, which I already knew about, but didn't say anything. She also did some neck stretching, very gentle. It sent me into muscle spasms like you would not believe! I don't know why, but I had to take extra percocet that day. It was the day of my epidural and I was in tears. The pain doctor said, "This is why I want to do what we talked about." Which is the intrathecal catheter. Dr. Tribus indicated that it wouldn't work for the kind of pain I'm having. My arm pain isn't really a constant pain, more of an awareness, nervy feeling. Dr. Tribus said that the intrathecal was used for pain that radiated down the limbs. I think it would work for my lumbar spine when the epidural wears off. So I don't know what it would do for my upper back. I'm not yet convinced.

You mentioned that you catch yourself holding your shoulders up to your ears. I do the exact same thing. It's as if I'm trying to protect my neck or something. When I'm aware of it, I try to keep the shoulders relaxed, but I do it alot. I don't know why. So yes, we do have something in common.

I don't know what to say about your surgery. If it were me, I would probably do it even if I didn't have pain. At this point in my life it would be because I have a friend who is dying of complications of scoliosis. She was afraid of revision surgery and put it off for too long and now her heart and lungs are damaged beyond repair. She is on oxygen and "waiting". I wish she would go get other opinions. Maybe SOMEONE could help her.

Being that I have had pain all my life, I would jump at the chance to have the surgery. I really don't know how I would feel in your shoes, though, because you have no pain. It doesn't seem to limit you. You have a job. I have always had a hard time getting a job because of my scoliosis. My doctors always put weight restrictions on me. Soooo, I went to school and got a B.S. in Cell and Molecular Biology and thought I would use my "brain" instead. I still can't find work. I graduated with honors, but it's been too long since graduation they tell me (2003). I actually think it would do me good to get a job. My hubby doesn't want me to work, and some days I get mad at him and other days when I'm crying and can't move even to roll over in bed, I thank him. But it's great that I see all these people with scoliosis WORKING! Every time I try, I get hurt. I NEVER go after workman's comp or anything. I just silently disappear. Anyway, this is off topic. I need to get my ducks in order first anyway. But you worker bee's out there are an inspiration to me for sure!

I hope whatever you decide, surgery or not, you do well. You definitely helped me with your experience. Hugs to you, too! ((((HUGS)))):)

rohrer01
04-27-2010, 11:56 PM
I will have this to say to everyone. You have all been very supportive and thank you so much. I see that many of you are going through the same frustrations.

I am going to try to get to the bottom of what is going on. I will ask for tests, etc. Right now, if I really won't benefit from surgery like I thought I would, it would be foolish of me to go doctor shopping just to find someone who is willing to do the slice and dice for the money. I want a good outcome, and if surgery isn't the answer, I guess the tests will reveal that.

Thanks to everyone! And to everyone who didn't get a hug... ((((HUGS)))):)

rohrer01
04-28-2010, 12:01 AM
Sounds like Dr. Tribus in Madison, I saw him yesterday for the third time over the last ten years, he was very unsympathetic, had no recommendations and left me in the room crying. I am convinced he had no interest in helping me.

I had surgery when I was 16 at the university of Minnesota, and my doctor retired and had recommended Dr. Tribus. My little sister also has Scoli, and we will not be going back to him.

I know of someone who just had surgery in Milwaukee that my mother knows, its sounds as if it went well. My mom thinks it was at childrens hospital.

If you are in northern Wisconsin, you may want to research Mayo or Minn., if you can find a good doctor, it's worth the trip.

Good luck to you, I am sorry that happened.

Sounds like Tribus leaves people crying in the room more than I thought. Maybe he is having a bad week?:( He was always nice and very understanding before yesterday... that's what I don't get. It was a complete about face. No advice for where to turn for help or anything.

rohrer01
04-28-2010, 12:11 AM
It doesnít look like he felt that he could help you. It would be best to just move on with your scoliosis journey, and eventually the pieces of the puzzle will come together. It still doesnít mean that he wont operate on you, I know this as my surgeon didnít want to work on me, and I basically had to convince him to do it. That was a 2 year timeframe. Sometimes, they just want to watch and wait. Surgeons donít like failure. At all.

I've seen a few Doctors and Surgeons in my time and have had many different types of reactions...My surgeon not only does scoliosis, but he also specializes in the neck. My Chiro called me to ask how I was doing the other day, and I have not had any more neck problems.

Do you have a coronal x-ray of your neck you could post? I ask this because I knew a girl almost 30 years ago who had quite a neck. Her pain was extreme.
She had 2 S curves, that started way up high like yours. I donít know what happened to her.

Be sure and let us know what happens. The "surgeon interview" process is always different with each of us.
Ed

I wish I could post my X-rays. I only have hard copies from 12 years ago. Sorry. I don't know if he would give me any on disk. Do I just call his office and ask for one? It's all computerized now. The X-ray goes directly into his computer and I don't get a copy. Your pictures and X-rays are amazing! You are a real success story, for sure! I really don't want to be fillet-o-fish if I don't need it. I don't want to end up worse. Right now my pain is so unpredictable. At the moment, they are treating it as constant as I have pain every day. I figured that if I had pain post-op, it would at least be more predictable. I just really think this is a lot of the problem (my scoli - even though it is small at 46*), and I have been fighting it all my life. I'm getting tired of going on and off meds or worrying do I have enough on hand in case I get a flare? My chiro has been very good to me. I think she thinks I have written her off. I am actually considering going back. I do get neck relief, but OH can I get some terrible shooting pain down my arms when she adjusts, scary! If she is the cause of the progression, I only have 4* to go to be "surgical", so at least then I would have the option. Do I dare ask about the "foam"?

rohrer01
04-28-2010, 02:24 PM
Well, I got a call from my neurosurgeon's nurse. They thought that they would send me to Physical Medicine and Rehabilitation. I've been there and done that. I don't know what they can do for me. But I said I was willing to go. Then she saw that I am seeing the pain specialist and wondered if I should just keep seeing him. I think when she calls back I will ask to keep seeing BOTH. I think the PM&R people can order and do some of the tests that I would like done. I will keep you all updated. Thanks again!:)

Pooka1
04-28-2010, 02:29 PM
I don't know how rapidly my curve is progressing. I don't know if the chiropractic visits are what caused it to start moving. If so, 6* would be in one year, not five. That is a bit more significant.

This is a whole 'nuther kettle of fish I think. I didn't realize your curve progressed 6* in one year. That is not the paradigm for sub-surgical curves by a long shot and I think you have something going on there beyond the "usual" or average progression rate in AIS.

If that rate continues, you will hit surgical territory very soon although your arm issues won't be resolved but your upper back issues might be.

I realize it is hard to get a second opinion but if you have lost trust in Tribus I don't know that you have a choice.

Good luck.

Pooka1
04-28-2010, 02:29 PM
Well, I got a call from my neurosurgeon's nurse. They thought that they would send me to Physical Medicine and Rehabilitation. I've been there and done that. I don't know what they can do for me. But I said I was willing to go. Then she saw that I am seeing the pain specialist and wondered if I should just keep seeing him. I think when she calls back I will ask to keep seeing BOTH. I think the PM&R people can order and do some of the tests that I would like done. I will keep you all updated. Thanks again!:)

Good plan. Don't drop any specialists yet until you get some relief.

rohrer01
04-28-2010, 02:44 PM
I realize it is hard to get a second opinion but if you have lost trust in Tribus I don't know that you have a choice.

Good luck.

From what I have read and heard, Dr. Tribus gets VERY good results. His post-op cobbs look really good. That is probably because he is so fussy about who he will operate on. I've also heard from another post (not the recent one) that he is lacking in bedside manners sometimes. That doesn't surprise me. Many a doctor in that kind of high stress job lack manners. They are more mechanical thinkers, not psychological thinkers. I can't say that I've lost trust in him. I think he had a really bad day and took it out on his patients - BIG TIME. There are a couple more SRS doctors in the Milwaukee area from what I see on the website. I will give Tribus another chance or two because I do feel that he is a good surgeon. That's what matters most to me. I don't have to go home to him every day - feel sorry for the wife!(if there is one).

I really NEED to get my hands on those chiropractic X-rays! So I will HAVE to make an appointment there. I think it is imperative to know how fast I am progressing right now. It will tell more of the whole story. I think the chiro is afraid of getting in trouble, though.:(

jrnyc
04-28-2010, 04:03 PM
rohr..i believe that you can call any doctor's office and speak to the office manager or the xray tech and ask for a copy of your x rays...technically, you have already paid for them (or your insurance has) so you have a right to them...of course, no telling how long it might take to get them...or you could ask if you could pick up the disk in person...
oh...Boachie is in NYC...he didnt take my insurance...if he still takes any...i did read that he will take "assignment"...of course, i dont have that... i have to go in network....

best regards...
jess

LindaRacine
04-28-2010, 10:08 PM
rohr..i believe that you can call any doctor's office and speak to the office manager or the xray tech and ask for a copy of your x rays...technically, you have already paid for them (or your insurance has) so you have a right to them...of course, no telling how long it might take to get them...or you could ask if you could pick up the disk in person...
oh...Boachie is in NYC...he didnt take my insurance...if he still takes any...i did read that he will take "assignment"...of course, i dont have that... i have to go in network....

best regards...
jess
Caution, however. I've heard from people who have called and who have been told that their xrays cannot be found. I would personally go in person and ask for the films. They still could conveniently "lose" them, but I think they're less likely to lie face-to-face than over the phone.

--Linda

rohrer01
04-29-2010, 07:43 AM
Caution, however. I've heard from people who have called and who have been told that their xrays cannot be found. I would personally go in person and ask for the films. They still could conveniently "lose" them, but I think they're less likely to lie face-to-face than over the phone.

--Linda

Yes, I know all too well how this can happen. I needed records from a c-section and tubal ligation from a hospital. During the c-section the anesthesiologist either "forgot" to give me the drug to knock me out or didn't give nearly enough, but DID give me the drug to paralyze me for the surgery. I felt EVERYTHING and heard everything as if no drug had been given. A nightmare that can not be explained as far a PAIN and not being able to scream. Long story short, they had NO RECORD that I had ever been admitted to that hospital, even though my son's birth certificate states that he was born there. I don't know how they get away with it.

I am on friendly terms with the chiro and made an appointment for Friday. I don't think she will give me any problems when I explain to her the importance of having copies of the X-rays. There is no disk. She has the old fashioned full blown film. I try to "keep" any I can get my hands on, so maybe she can make me a copy.

dianeh
04-29-2010, 08:04 AM
Rohrer01,
Your doctor was totally unprofessional during that visit and none of this is your fault. Your pain is real and you don't sound at all like you have a drug problem from your posts. Wish I could give you a hug.
I had a similar experience with a doctor who walked out of the room with me hysterically crying, and I ran after him and watched him get in his car and drive away! This was also someone I liked and later found out he had Lyme Disease and was suspended from practice because he was so sick and over medicated. He had been rude to other patients as well but of course, we don't know these things in the middle of the situation. (Not a scoli doctor)
Others have posted some very good advice on this thread. There is another doctor out there who will treat you as you deserve to be treated.
dianeh

LynnMarie74
04-29-2010, 03:07 PM
WOW! Im sorry you had that experience w/Tribus. However, honestly, it doesnt surprise me....my post op checks with him, werent as "personable" and there was one or two times where he was winging it with me (conversaton wise- w/o my chart) and was going on about my anterior and posterior incisions. I corrected him, and said, I only had posterior! He laughed it off...then said I was doing well for being only 3 months out...I was there for me 6 month check. You are right tho, about him being a thinker and highly skilled in his work....maybe there isnt a good balance between that and a bedside manner? There is another gal on here that had a 2nd surgery w/Tribus....I forget her screen name. Her name is Colleen & lives in WI as well. Let me find out for you and get back to you. Maybe she can give some insite as well.......keep us posted!

Lynn

LynnMarie74
04-29-2010, 03:18 PM
As promised....Colleens name on here is ALWAYS SMILIN'

jrnyc
04-29-2010, 03:25 PM
rohr...i cant believe what a nitemare that was...a c section and tubal ligation without being asleep...my gosh, i think i wouldve died, and if i lived, i wouldve sued the pants off the doctor who did that!!

the more i read about this Tribus guy, the more i appreciate Dr Lonner....

i refuse to give any doctor a pass just because they may be a really good doctor...they still need to consider their patient's feelings...i'm not saying they have to cry with us...:rolleyes:
but if they cant at least acknowledge what we are going thru...then i would move on....seriously, how much can any human being take...?! i've had doctors who werent the most....sympathetic...but if they were truly...disgustingly cold and robotic...i walked! Lyme taught me that! the hard way!! the "scientific geniuses" should stay in the research labs!

jess

rohrer01
04-29-2010, 08:09 PM
rohr...i cant believe what a nitemare that was...a c section and tubal ligation without being asleep...my gosh, i think i wouldve died, and if i lived, i wouldve sued the pants off the doctor who did that!!


jess
That's what I mean when I say I'm no stranger to pain. If I say I hurt, then by golly I HURT. That's why I tend to minimize pain is because of the c-section experience. I don't think it gets much worse than that. My back pain can be so bad that I wake up screaming just trying to roll over in bed. It's aweful! I have good pain control now. It's not perfect. I think if I got rid of literally ALL my pain, that would be overkill. I saw my GP today and he was very understanding. I signed my pain contract with him. I think it is a good idea. It keeps the patient responsible for themselves and keeps the doctors out of trouble. We have a very good pediatrician here that lost his ability to prescribe narcotics because someone abused them and got hurt. It's terrible because he is a VERY skilled physician. So the pain contract will hopefully prevent drug seekers from getting these good doctors that are actually trying to help people to be able to live and function with somewhat normal lives from getting into trouble. I absolutely detest people like that, that make it hard for legitimate patients to be taken seriously. I am glad that I have not had that trouble here.

I'm hoping that the docs that I'm seeing next week can help sort things out. Even if I do end up with the stupid pump, at least it will be a lower dose of meds. My GP thought it was a good idea to run some more test. He ordered a cervical MRI and encouraged me to continue to see the Physical Medicine doctor and the pain specialist. I think after taking Linda Racines "quiz" on should you have surgery, I will seek out at least a second opinion for sugery. If it is still NO, then I will stop there. If it is YES, then I'll have to see a third and go with the 2 out of 3. I just don't know how we will afford it...sigh... Thanks for listening!!

Back-out
04-29-2010, 11:27 PM
Dear rohr,

Just checking in. Read about the C-section experience and wanted to say how sorry I am you went through that nightmare. I've read of other patients going through similar things. This FWIW is one of the main reasons they are now changing the laws on lethal injection.

The thinking is, the old med combination might be inhumane, because prisoners could die in that same state - in agony, fully conscious but paralyzed, because one of the meds didn't kick in properly. Meanwhile, the medics search for difficult veins, etc while the prisoner is unable to express his/her pain and terror.

Without getting into a discussion of whether they deserve to suffer for whatever they've done, it ls much a function of non-inmate suffering like yours that the methodology is being changed. Even condemned prisoners facing execution are protected against "cruel and unusual punishment"

What you suffered - and as a new mother!

I am already not very happy with anesthetics which combine paralysis with amnesia. Consider that the pt is unable to move (what the surgeon wants) while forgetting their pain (so they can't complain). Missing - analgesia! Pain relief. I am sure such experiences register and change our unconscious minds.

BTW I am becoming convinced Dr. Tribus is flaking out especially from the duplicate comments. Doctors are not gods and they have breakdowns from personal crises and addictions just like the rest of the non-MD populations. Once I saw a shrink in conjunction with a son's ADD and complained about insensitive treatment from a new MD (to have been my new family doctor).

His response, "I can't believe it! That's the fourth complaint I've heard this week". The shrink didn't even have an immense practice. Obviously the doc was letting everyone have it. Maybe he kept it up. I don't know as I never went back.

As a matter of fact, I know (because he told me separately) that he'd been saddled that week with triple his patient load in his group practice, according to the terms of his contract. (Several other docs had left suddenly). Guess that was his way of reducing his load!

Shame they have so much power over us mortals. And the ones who really crack and mess up are protected by the professional cabal against squealers. We had an alcoholic anesthetist who remained in practice for years leaving a trail of deaths and damage in the wake of "his problem" until somehow the truth came out.

So sorry for you who were affected recently. FWIW if a doctor's behavior is unprofessional and really beyond the pale, even just in manners, a letter (if well written ) to the AMA, can sometimes actually force an apology. I regretted not standing up for myself in the experience I referred to above.

rohrer01
04-29-2010, 11:51 PM
Dear rohr,

Just checking in. Read about the C-section experience and wanted to say how sorry I am you went through that nightmare. I've read of other patients going through similar things. This FWIW is one of the main reasons they are now changing the laws on lethal injection.

The thinking is, the old med combination might be inhumane, because prisoners could die in that same state - in agony, fully conscious but paralyzed, because one of the meds didn't kick in properly. Meanwhile, the medics search for difficult veins, etc while the prisoner is unable to express his/her pain and terror.

Without getting into a discussion of whether they deserve to suffer for whatever they've done, it ls much a function of non-inmate suffering like yours that the methodology is being changed. Even condemned prisoners facing execution are protected against "cruel and unusual punishment"

What you suffered - and as a new mother!

I am already not very happy with anesthetics which combine paralysis with amnesia. Consider that the pt is unable to move (what the surgeon wants) while forgetting their pain (so they can't complain). Missing - analgesia! Pain relief. I am sure such experiences register and change our unconscious minds.

BTW I am becoming convinced Dr. Tribus is flaking out especially from the duplicate comments. Doctors are not gods and they have breakdowns from personal crises and addictions just like the rest of the non-MD populations. Once I saw a shrink in conjunction with a son's ADD and complained about insensitive treatment from a new MD (to have been my new family doctor).

His response, "I can't believe it! That's the fourth complaint I've heard this week". The shrink didn't even have an immense practice. Obviously the doc was letting everyone have it. Maybe he kept it up. I don't know as I never went back.

As a matter of fact, I know (because he told me separately) that he'd been saddled that week with triple his patient load in his group practice, according to the terms of his contract. (Several other docs had left suddenly). Guess that was his way of reducing his load!

Shame they have so much power over us mortals. And the ones who really crack and mess up are protected by the professional cabal against squealers. We had an alcoholic anesthetist who remained in practice for years leaving a trail of deaths and damage in the wake of "his problem" until somehow the truth came out.

So sorry for you who were affected recently. FWIW if a doctor's behavior is unprofessional and really beyond the pale, even just in manners, a letter (if well written ) to the AMA, can sometimes actually force an apology. I regretted not standing up for myself in the experience I referred to above.

I actually thought about writing a letter. I'm not sure who to write it to. I would write it directly to Dr. Tribus if I thought he would read it, but there is no guarantee there. He wans't like totally rude, but not with where we were last month. He is the one who told me to come back if my neck got worse because he couldn't believe I wasn't having more pain in it due to the high thoracic curve. In fact he said he was surprised that I could turn my head, then to say it is unrelated when I do come back. It was a 2 hour drive for me to go there and waste my time!

rohrer01
05-01-2010, 06:34 PM
This is a whole 'nuther kettle of fish I think. I didn't realize your curve progressed 6* in one year. That is not the paradigm for sub-surgical curves by a long shot and I think you have something going on there beyond the "usual" or average progression rate in AIS.

If that rate continues, you will hit surgical territory very soon although your arm issues won't be resolved but your upper back issues might be.

I realize it is hard to get a second opinion but if you have lost trust in Tribus I don't know that you have a choice.

Good luck.

As it turns out, I started seeing the chiropractor in April 2008. ALL my progression appears to have happened since then. I finally got the X-ray. She measured it at 41*, which was where I was in 2000. In 2005 Dr. Tribus measured me at 40*, now in 2010 I'm 46*. I know the chiro treatments caused the progression. BUT I was already having severe PAIN when my curve was in the upper 30's.

So the question is, do I keep having chiro treatments so I can get into "surgical territory" and finally be able to have the surgery that I need? Or to let the pain guys get their hands on me and stick a catheter in my spine? I have an appointment for an MRI of the neck on Tuesday along with seeing a PA-C from Physical Medicine and Rehabilitation. I'm taking my chiro X-rays along with me to see what they think.

I'm also considering traveling out of state to get a 2nd and 3rd opinion. If the 2nd opinion says NO to surgery, I'll stop there. But if he/she says Yes to surgery, I'll get a 3rd opinion and go with the 2 out of 3. Dr. Lonner in NYC does minimally invasive surgeries with seemingly good results. I would like to consult with him. Dr. Lenke in St. Louis also seems to get some good results considering the age group he operates on. So I thought he would be a good one, too.

If anyone has any other suggestions they are more than welcome to recommend a doctor. Dr. Gupta is closer to me, in Chicago. I don't want to go back to Minneapolis, I was treated badly there by Dr. Perra. He was more concerned with numbers than the patient sitting in front of him. His magical 50* no matter what. He also didn't believe scoliosis caused pain. So will NOT go back there (that was 2000 - not progressing at the time). Thanks again!
;)

jrnyc
05-01-2010, 07:35 PM
oh, rohr...please be careful using a chiro to speed up the scoli...he/she might do more damage...or damage to some part of the back other than the scoli...that will cause problems that wont be fixed with the surgery...i just think it is a dangerous plan...and i'm afraid for you...

jess

rohrer01
05-01-2010, 10:20 PM
oh, rohr...please be careful using a chiro to speed up the scoli...he/she might do more damage...or damage to some part of the back other than the scoli...that will cause problems that wont be fixed with the surgery...i just think it is a dangerous plan...and i'm afraid for you...

jess

I'm just being snippity.:rolleyes: My daughter said the same thing about doing something so foolish. I'm not going to do anything stupid like that. I told her she wasn't allowed to touch my T-spine. I did get a neck adjustment. My neck still hurts, so it is probably a waste of my time, I don't know. It seems I get relief, but it is short lived. The muscle work, however, was just a quick massage where she was able to get her little fingers kind of under the scapula where the muscle spasms are. I haven't had any bad muscle spasms since. I know she won't hurt me with just massage, and she's hiring a massage therapist to work in her office. That is probably who I will be seeing. Massage DOES help with pain for sure.