Bad news!!!

[rohrer01]

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]

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]

I'm so sorry to hear of your disappointment. Why would he do an about-face like that? You should definitely seek out another specialist. I hope that you can find one very soon.

[rohrer01]

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]

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]

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]

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]

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]

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.

[rohrer01]

Maybe I should start going back to the chiropractor so I can reach the magical 50* sooner. Isn't that aweful!

[LindaRacine]

Is this Dr. Tribus?

[Back-out]

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!

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-t...aphy-myelogram

[jrnyc]

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]

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]

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!

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-t...aphy-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?

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.