Bad news!!!

[Back-out]

Pt II - more delicate,

decided to send it in PM.

[chickatey]

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]

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]

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]

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]

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]

Wisconsin Peer

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]

It doesn’t 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 doesn’t mean that he wont operate on you, I know this as my surgeon didn’t 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 don’t 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 don’t 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]

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]

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]

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]

It doesn’t 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 doesn’t mean that he wont operate on you, I know this as my surgeon didn’t 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 don’t 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 don’t 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]

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]

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]

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.