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tiona24
04-27-2010, 10:51 PM
Hi All,
New here.

I am 30 years old, and had surgery when I was 16. To be completely honest, I am a little embarrased I cannot speak intelligently about my curve details. I know I have multiple curves, and I have my lower back fused with four screws and a 5 in rod.

I have had chronic discomfort in my upper shoulder blade region and along my upper spine for years. Usually a very tense, burning and almost internal itching sensation. I think they referred to it as bursitis, in which I saw a PT for about 5 years ago. I don't think the pain ever really went away.

I'm now to the point I am exhausted from the discomfort, and decided to once again go complain to my doctor about it. (It's been 4 years since I've been to the doctor).

Yesterday was my appointment, and Dr. Tribus of Madison basically told me to live with it. The great news is my main curve has remained at 35 degrees. Therefore, surgery is really not an option- believe me, last thing I want to go through again if I can help it.

Any other suggestions on how to treat? I've done yoga, the gym, ib profen, I've been sleeping on a heating pad for months... nothing seems to work. I also get regular massages, which usually results in tears, good tears I think- that I get a few hours of relief. Whenever I take a walk (for exercise), my back muscles almost immediately begin to ache.

Thanks for listening to me complain... your advice is appreciated.

jrnyc
04-27-2010, 11:25 PM
Hi Tiona
welcome to forum...lots of good people and good stories shared with others...lots of info and encouragement...

i'd suggest pain management doctor for a consult to see what they think they could offer in terms of options...i have been seeing mine for over 4 years....the botox for upper back is really helping stop the muscle spasms....too bad there hasnt been much to help my lower back...have had epidurals, nerve ablation, facet blocks, and sacroiliac injections, which seemed to help most...but all were very temporary help!

i hope that you find the help you need

best regards
jess

foofer
04-27-2010, 11:38 PM
Hello Tiana,

Welcome to the forum! Wow, sounds like you and Rohrer01 were seen by the same doctor, on the same day, with the same unhappy results. I hope you get to talk to one another.

My advice is to read and read some more on this site. I usually check to see what is new, and then lately I've been researching specific topics of interest from past postings. There is so much on here.

You can also ask lots of questions....and lots of people have lots of answers. It's great....

Hope you find relief in your journey here.

rohrer01
04-28-2010, 12:25 AM
Hi All,
New here.

I am 30 years old, and had surgery when I was 16. To be completely honest, I am a little embarrased I cannot speak intelligently about my curve details. I know I have multiple curves, and I have my lower back fused with four screws and a 5 in rod.

I have had chronic discomfort in my upper shoulder blade region and along my upper spine for years. Usually a very tense, burning and almost internal itching sensation. I think they referred to it as bursitis, in which I saw a PT for about 5 years ago. I don't think the pain ever really went away.

I'm now to the point I am exhausted from the discomfort, and decided to once again go complain to my doctor about it. (It's been 4 years since I've been to the doctor).

Yesterday was my appointment, and Dr. Tribus of Madison basically told me to live with it. The great news is my main curve has remained at 35 degrees. Therefore, surgery is really not an option- believe me, last thing I want to go through again if I can help it.

Any other suggestions on how to treat? I've done yoga, the gym, ib profen, I've been sleeping on a heating pad for months... nothing seems to work. I also get regular massages, which usually results in tears, good tears I think- that I get a few hours of relief. Whenever I take a walk (for exercise), my back muscles almost immediately begin to ache.

Thanks for listening to me complain... your advice is appreciated.

I see you posted on my other thread. Welcome. Dr. Tribus seems to be definitely having a BAD week as far as bedside manners go. :mad: I see a pain specialist as well. I think they can help you. They want to do an intrathecal implantation in my upper back for the pain. There is a gal on here who gets botox injections that help her tremendously. I'm going to try to check in to that myself. But I would definitely see a pain doc. I hope this helps you! If you have a general practitioner, maybe he can give you pain meds temporarily until you get in to see the other doctor. Best wishes!:)

spiritofbamboo
04-28-2010, 01:47 PM
Hi All,
New here.

I am 30 years old, and had surgery when I was 16. To be completely honest, I am a little embarrased I cannot speak intelligently about my curve details. I know I have multiple curves, and I have my lower back fused with four screws and a 5 in rod.

I have had chronic discomfort in my upper shoulder blade region and along my upper spine for years. Usually a very tense, burning and almost internal itching sensation. I think they referred to it as bursitis, in which I saw a PT for about 5 years ago. I don't think the pain ever really went away.

I'm now to the point I am exhausted from the discomfort, and decided to once again go complain to my doctor about it. (It's been 4 years since I've been to the doctor).

Yesterday was my appointment, and Dr. Tribus of Madison basically told me to live with it. The great news is my main curve has remained at 35 degrees. Therefore, surgery is really not an option- believe me, last thing I want to go through again if I can help it.

Any other suggestions on how to treat? I've done yoga, the gym, ib profen, I've been sleeping on a heating pad for months... nothing seems to work. I also get regular massages, which usually results in tears, good tears I think- that I get a few hours of relief. Whenever I take a walk (for exercise), my back muscles almost immediately begin to ache.

Thanks for listening to me complain... your advice is appreciated.

I am an acupuncturist and I do Myofascial Release and Craniosacral therapy. Every scoliosis patient that I treat gets relief from the pain, improves their posture and is able to do things they haven't been able to do. I am saying this because I know this works because it treats the whole body. Scar tissue affects the entire body. Unless it is addressed it will be more difficult or challenging to manage- change the pain syndrome. Pain meds function as a bandaide but do not resolve the root of the problem. (Though sometimes they are necessary.)

rohrer01
04-28-2010, 01:54 PM
I am an acupuncturist and I do Myofascial Release and Craniosacral therapy. Every scoliosis patient that I treat gets relief from the pain, improves their posture and is able to do things they haven't been able to do. I am saying this because I know this works because it treats the whole body. Scar tissue effects the entire body. Unless it is addressed it will be more difficult or challenging to manage- change the pain syndrome. Pain meds function as a bandaide but do not resolve the root of the problem. (Though sometimes they are necessary.)

Are you in Wisconsin?

LindaRacine
04-28-2010, 10:22 PM
Hi All,
New here.

I am 30 years old, and had surgery when I was 16. To be completely honest, I am a little embarrased I cannot speak intelligently about my curve details. I know I have multiple curves, and I have my lower back fused with four screws and a 5 in rod.

I have had chronic discomfort in my upper shoulder blade region and along my upper spine for years. Usually a very tense, burning and almost internal itching sensation. I think they referred to it as bursitis, in which I saw a PT for about 5 years ago. I don't think the pain ever really went away.

I'm now to the point I am exhausted from the discomfort, and decided to once again go complain to my doctor about it. (It's been 4 years since I've been to the doctor).

Yesterday was my appointment, and Dr. Tribus of Madison basically told me to live with it. The great news is my main curve has remained at 35 degrees. Therefore, surgery is really not an option- believe me, last thing I want to go through again if I can help it.

Any other suggestions on how to treat? I've done yoga, the gym, ib profen, I've been sleeping on a heating pad for months... nothing seems to work. I also get regular massages, which usually results in tears, good tears I think- that I get a few hours of relief. Whenever I take a walk (for exercise), my back muscles almost immediately begin to ache.

Thanks for listening to me complain... your advice is appreciated.
Tiona... I would go back to Dr. Tribus and tell him that you're unwilling to live with it.

I don't understand what is going on with Dr. Tribus. He certainly has the training to fix these problems. I wonder if he recently had a patient who had a poor outcome, and is blaming him. I can only imagine how disheartening that is for a surgeon. As you know, patients are always told that their pain may not be any better after surgery, and in fact, can be worse. Unfortunately, there are the occasional patients who think that the surgeon is at fault if they have pain after surgery. Because of those types of situations, surgeons often turn patients away if they have any concern about the patient's outcome.

I hope you get relief some how.

Regards,
Linda



--Linda

rohrer01
04-29-2010, 12:26 AM
Tiona... I would go back to Dr. Tribus and tell him that you're unwilling to live with it.

I don't understand what is going on with Dr. Tribus. He certainly has the training to fix these problems. I wonder if he recently had a patient who had a poor outcome, and is blaming him. I can only imagine how disheartening that is for a surgeon. As you know, patients are always told that their pain may not be any better after surgery, and in fact, can be worse. Unfortunately, there are the occasional patients who think that the surgeon is at fault if they have pain after surgery. Because of those types of situations, surgeons often turn patients away if they have any concern about the patient's outcome.

I hope you get relief some how.

Regards,
Linda



--Linda

Sorry Linda, you don't seem to understand how unsympathetic Dr. Tribus is about pain. My mom told me today that maybe he is having a bad week because of a difficult case or something. I think that may be the case. He sent us both away in tears the other day. However, the very first time I ever saw him, he told me "Avoid narcotics like the plague." That is his view.

I would suggest she go to a pain specialist and use ICE. I have similar upper back pain and that generally works better than heat (unless I'm really cold). I think it's because the ice reduces the swelling and has more of a numbing effect. I found, too, that when I walk, if I swing my arms it exacerbates my upper back pain, so I usually just keep my hands in my pockets.

I know you have more medical experience than I do, but unless you work for Dr. Tribus and know something we don't, I haven't ever found him to be too sympathetic toward pain, other than, in my particular case, he doesn't want to hurt me worse. You may be right, he might have had a patient with a bad outcome blame him. That's not fair to the doctor, but it does happen. We all make our own choices and if we choose to have surgery, we KNOW that the pain may get better OR it may get worse. One can not ever predict with 100% certainty. Dr. Tribus said he likes to be able to give his patients an 80% chance that the pain will improve after surgery, otherwise NO. That leaves 20% with no improvement or worse pain. It's a gamble.

Even if I do eventually have surgery with him, I will NOT use him for post-op pain control after hospital discharge. Just my thoughts, as he has been my doc for over 5 years and I have seen his general overall attitude about pain control.

Tiona24, I hope you can get some help. I'm back at square one, too. I'm seeing doctor's in Physical Medicine and Rehabilitation AND a pain specialist. I've also made an appointment to see my chiropractor again (I NEED to get my hands on her X-rays of me from a year ago) but will be focusing more on muscle work this time. A word of caution: Be careful with chiropractic and scoliosis. They are not always a good mix, especially if the chiro doesn't know what he/she is doing. They can cause harm, but then again so can surgeons. Just my words of wisdom. I hope you feel better!

spiritofbamboo
04-29-2010, 02:25 AM
Are you in Wisconsin?

No. I am in CA. SF Bay area. San Jose to be precise.

jrnyc
04-29-2010, 03:13 AM
is he serious..."avoid narcotics like the plague"??!! does he not know the kind of pain his patients are in?!!

i hate doctors who talk like that...does he really think we are all just drug addicts, looking for a dealer!? :rolleyes:

that is an outrageous comment to make to a human being who is searching for help and relief!!

jess

rohrer01
04-29-2010, 07:14 AM
is he serious..."avoid narcotics like the plague"??!! does he not know the kind of pain his patients are in?!!

i hate doctors who talk like that...does he really think we are all just drug addicts, looking for a dealer!? :rolleyes:

that is an outrageous comment to make to a human being who is searching for help and relief!!

jess

Well, if one is looking for sympathy or pain relief, this is NOT the doctor to go to. I think he focuses primarily on the surgical aspect. If he can not do surgery or feels it won't help you, he sends you on your way. He was the only one to believe me about my pain, as far as scoli doctors are concerned and he has apparently changed his attitude about scoli and pain in the last month.:confused:

rohrer01
04-29-2010, 07:26 AM
I personally have not been able to do without narcotics for about 12 years now. Really, how much suffering and for how long does one have to suffer to be believed? Before that I was an NSAID addict and continued to be until very recently when my GP said, "No more NSAIDS for you, at least for now." He apparently read a study that NSAIDS have an accumulative effect on the body and can eventually cause kidney failure in some people who use them long term (even though they are not abused). Since I have a medication sensitivity, he said to me if things go wrong from drugs, it usually happens to me! I've had a LOT of bad reactions - so much so that it has created drug anxiety with me. I have to stick to things I know or else get past the anxiety phase of trying a new drug. He doesn't want to take any chances of kidney failure to add to my list of problems. At least he understands my pain aspect of my disease and is willing to treat me for it. This is why I suggest finding a compassionate GP or pain doctor or someone else. Most scoli,...excuse me.... ALL scoli surgeons I have ever seen have been completely non-understanding and uncompassionate about scoli pain simply because they don't think it exists. You would think that the experts in the field would be the ones who understand the most, but they are not.

jrnyc
04-29-2010, 10:32 AM
Hi rohr
i swear that Dr Lonner believes the pain aspect of scoli....
plus if you have disc problems...well, i dont know of anyone, doctor or not, who doesnt believe disc pain! "oh my aching back" is a well known complaint..and that's from people with straight backs! :rolleyes:

when i had Lyme disease ...really bad and very very sick...many doctors didnt believe me...back in the 1980's less was known about it...but that was no excuse...when a patient says he/she is in pain, a good doctor should believe it....some said i had "antibiotic seeking behavior" !! :confused: as if anyone wants antibiotics who doesnt desperately need them...what, did they think i was getting high off antibiotics, when they usually make your stomach sick!!?

i lost respect for doctors then...and it takes a lot for me to respect a doctor now!

jess

tiona24
04-29-2010, 09:45 PM
Wow, thank you all for your advice!

LindaRacine, I actually have seen Dr. Tribus three times now over the last ten years. The first time I saw him, I liked him because he didn't recommend surgery. I don't recall being in pain back then, just went to him for a check up. However, the last two times I was there, he was an aweful doctor. Insists I need to be a swimmer, the cure all for back pain. It seemed as though he gets a thought in his mind, at its a one size fits all answer for everyone. He also told me I was border line pushing it with the doses of IB profen I was taking.

I live in Illinois now, so I'd like to find a doctor in the Chicago land area. I don't know much about pain management doctors and what they do, but I'd take any of your suggestions!

I feel pretty strongly against chiropracty, but would be open to accupuncture or this botox treatment, sounds interesting and perhaps expensive!

Thanks all!

Tiona

jrnyc
04-29-2010, 09:57 PM
Hi Tiona
pain management doctors can do alot...and should be covered by your insurance...the botox is paid for by my insurance company...because it is for pain, not cosmetic...it has been so helpful to my upper back(42 degree curve)...freezes the muscles so they cant spasm...i get the shots every 3-4 months...
as i saaid in an earlier post on this thread....unfortunately, there has been very little that has helped my lumbar curve of 61 degrees....and my disc disease is causing a tremendous amount of pain!! the epidurals, nerve ablation, facet blocks, and sacroiliac injections have helped either very short term or not at all...the sacroiliac shots helped the most, but even so, the relief barely lasted a month!

i think a consult with a pain doctor would be a good idea...they could do an evaluation and let you know what the options are for you...

best of luck
jess

rohrer01
04-29-2010, 10:03 PM
Go to the SRS website to find a Chicago doctor. I know they must have some good ones there. They usually do in the bigger cities. Hope you find a better one than we currently have..;)

LindaRacine
04-29-2010, 10:04 PM
Wow, thank you all for your advice!

LindaRacine, I actually have seen Dr. Tribus three times now over the last ten years. The first time I saw him, I liked him because he didn't recommend surgery. I don't recall being in pain back then, just went to him for a check up. However, the last two times I was there, he was an aweful doctor. Insists I need to be a swimmer, the cure all for back pain. It seemed as though he gets a thought in his mind, at its a one size fits all answer for everyone. He also told me I was border line pushing it with the doses of IB profen I was taking.

I live in Illinois now, so I'd like to find a doctor in the Chicago land area. I don't know much about pain management doctors and what they do, but I'd take any of your suggestions!

I feel pretty strongly against chiropracty, but would be open to accupuncture or this botox treatment, sounds interesting and perhaps expensive!

Thanks all!

Tiona
I'm so disappointed about this. Dr. Tribus was trained by David Bradford at UCSF, who has turned out a large percentage of the best scoliosis surgeons in North America. Either it's an incredible coincidence, or something has happened to the man. :(

In Chicago, check out Pernendu Gupta, Christopher DeWald, or Kim Hammerberg.

--Linda

tiona24
05-02-2010, 12:08 AM
The reason I originally went to Dr. Tribus post op was because he was recommended to me by my surgeon Dr. Ogilvie out of the University of Minnesota because he retired. He had told me Dr. Tribus studied under him. Dr. Ogilvie was amazing... night and day.

rohrer01
05-02-2010, 02:09 AM
The reason I originally went to Dr. Tribus post op was because he was recommended to me by my surgeon Dr. Ogilvie out of the University of Minnesota because he retired. He had told me Dr. Tribus studied under him. Dr. Ogilvie was amazing... night and day.

I saw Dr. Ogilvie's partner, Joe Perra (I believe Ogilvie treats children and Perra treats adults) when I was 29 years old. He was worse than Dr. Tribus. I was having a very bad pain episode right there in his office. I couldn't turn my head to even look at him because I was in so much pain. When I asked him what I could do about it, he said, "Take some Tylenol." I don't know what it is with me always seeing jerky scoli doctors. I'm starting to think they are all that way. Dr. Tribus, at least the first two times of seeing him believed me about the pain and said he would do surgery for it. He told me to come back if it got worse and when I did, I thought I was looking at Joe Perra! I am not a cobb angle, I am a person in pain, that no scoli doctor seem to believe or want to help!

I used to complain to my mom starting about age 12 that my spine hurt. She would say that's rediculous! And I would say, "But mom, my spine isn't in the middle of my back where it should be." She would always answer with that was impossible. Go take some aspirin. I guess this board is the only place where I can talk to people who really believe me, at least I think they do. I've never had validation and it makes me feel like a hypochondriac, which I used to get called a LOT when I had pain as a youngster. Sorry, I guess this isn't the place to talk about that, but the emotional pain is just as real as the physical pain. My husband believes me because he hears me scream in the night just trying to reposition myself (when my pain is not under control). I wake us both up.

So if your family doesn't believe you, the doctor's don't believe you, what are you supposed to do. Neurosurgeon's, General Practicioner's, Pain management doctor's, and Chiropractor's all believe me, but none of them can help me with the real problem. Just frustrated is all. Sorry if I hijacked your thread. I guess just keep searching until you get the relief you are looking for.

dailystrength
05-02-2010, 08:08 PM
Just a quick reply to Rohrer, I think parents have a hard time admitting and facing that anything is wrong with their children that they can't fix, because it makes them feel helpless maybe. I had a hard time getting my mother to understand the imbalances of my spine - it took many demonstrations of the forward bend, and lots of book illustrations to show the rib effect. It is hard I think because scoliosis is complicated- not just being side to side, but causing the upper and lower trunk to rotate in opposite directions--she is finally understanding my quest of how to sit and stand best. My dad is another story; he means well but "stand up straight" is just not helpful. I think they have no idea what to say or do. Good for you for doing all you can; I find that we need to be our best helpers.