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rohrer01
11-05-2011, 06:08 PM
Hello. I just wanted to know how your surgery went. If they fused you from T1 to L2, those are the exact same vertebrae that they would fuse on me IF I ever get the surgery. My docs fear that that high of a fusion would impinge my ability to lift my arms. If it's okay to ask, how do you feel? Are you a thin person? My doc was also concerned about the hardware being felt under my skin due to low BMI.

Marina63
11-05-2011, 08:30 PM
Hi! My surgery went well without any complications. I am now 16 weeks post op. I work out six days a week. Currently, I lift weights (very light) three days a week, take spin class (three days a week) and walk four miles, three days a week. I have no problem lifting my arms above my head. Yes, I am thin. My BMI is 20. I also worried about feeling the rods because I am so thin but I cannot. I was very fit before my surgery as well. Since starting PT about three weeks ago, my mobility has increased tremendously and I have a lot less stiffness.

What degree is your curve? Have you thought about when you will have the surgery or even if you will have it?

rohrer01
11-05-2011, 09:17 PM
My curves are 46* and 38* and very painful. They have started progressing over the last 5 years. I'm surprised they were able to brace you, as I was told there was no brace that could hold a curve that high. My highest curve is the largest and convex to the left and it really limits my head mobility at times. My neck hurts, shoulders hurt, my ribs hurt, I have rigid muscles above my top curve and muscle spasms everywhere and daily headaches that can be very debilitating at times. I was diagnosed at 16 with 36* - 39* depending on who measured them with a very minimal compensatory curve which is now structural. I used to be in much better shape, but as I'm getting older I hurt too much to be as active as I used to be. I sound like a sob story, sorry. Thanks for replying. It gives me hope. My surgeon doesn't want to do anything until I'm 60*.

rohrer01
11-05-2011, 11:56 PM
What were your curves? You seem pretty excited to be down to 20*. I guess I would have higher expectations for correction just because my neck is so involved. My curve starts at T1. But I would be happy with 20* if I had the same pain reducing results that you have. I guess I'm just hoping for 0*, but I'm sure that is impossible without a lot of extra stuff done that I wouldn't want done like thoracotomy. For some reason that procedure really scares the bajeebees out of me.

Duh, silly me! It states in your signature that you were 61*. Sorry about that. Did your curve start at T1 or did they just take the fusion up a notch or two to create more stability? I just can't imagine how much pain I will be in at 61* if I am in so much pain now! Eeeeeeks

Marina63
11-06-2011, 05:33 AM
I was braced as a preteen and back then my curve was only in the 30s. I don't remember exactly. My curve has worsened sometime between 1994 (when I went to have it checked prior to getting pregnant) and last January when I went to see an ortho for some nerve issues I was having on the left rib cage. Had NO idea it had gotten worse.

My surgeon said that it is not a good idea to over correct the curve or completely straighten it. That will then create other problems. It's already been an experience with the correction I have had. Everything having to readjust after probably close to 15 years of being way out of whack. I only have the one curve.

I think the curve starts at T3 but the rod starts at T1 to stabilize. He also went down to L2 and the curve ends at L1. I wish I could post a picture on this forum but I don't think it's possible. I can send you my before and after x-rays via email if you are interested.

Ugh, thoractomy sounds very unpleasant. Don't blame you for not wanting that. Has someone suggested you might?

I can't believe you are in so much pain. Your curves don't seem that high. But I guess it all depends on where they are and how they impact your body. It's very interesting to read about others curves and the problems they are having. I must say, I was very lucky with my curve. I was very active, lifting weights 2-3 times a week and really focusing on weights to strengthen my upper back. I had no pain per se but just an annoying burning and tingling sensation under my left breast that I had for about ten years. In the back of my mind, I knew it had something to do with my curve but I never thought it was a result of the curve worsening. When the nerve sensation started getting worse and then I had an odd, very annoying pulling in the back, opposite where the nerves were tingling, I went to see an ortho. I was definitely not prepared for what I was told. The doctor did tell me that had I not been fit and done all the exercises I had been doing, I would not have made it this far with my curve. I am now getting back into exercising and cannot imagine not being able to. I guess I could say it has saved my life.

May I ask why your doctor wants to wait until you are 60? My doctor was very adamant about me not waiting. I wanted to wait a year or so but decided that the stars were all aligned and went ahead and did it in July.

rohrer01
11-06-2011, 06:33 PM
I was braced as a preteen and back then my curve was only in the 30s. I don't remember exactly. My curve has worsened sometime between 1994 (when I went to have it checked prior to getting pregnant) and last January when I went to see an ortho for some nerve issues I was having on the left rib cage. Had NO idea it had gotten worse.

My surgeon said that it is not a good idea to over correct the curve or completely straighten it. That will then create other problems. It's already been an experience with the correction I have had. Everything having to readjust after probably close to 15 years of being way out of whack. I only have the one curve.

I think the curve starts at T3 but the rod starts at T1 to stabilize. He also went down to L2 and the curve ends at L1. I wish I could post a picture on this forum but I don't think it's possible. I can send you my before and after x-rays via email if you are interested.

Ugh, thoractomy sounds very unpleasant. Don't blame you for not wanting that. Has someone suggested you might?

I can't believe you are in so much pain. Your curves don't seem that high. But I guess it all depends on where they are and how they impact your body. It's very interesting to read about others curves and the problems they are having. I must say, I was very lucky with my curve. I was very active, lifting weights 2-3 times a week and really focusing on weights to strengthen my upper back. I had no pain per se but just an annoying burning and tingling sensation under my left breast that I had for about ten years. In the back of my mind, I knew it had something to do with my curve but I never thought it was a result of the curve worsening. When the nerve sensation started getting worse and then I had an odd, very annoying pulling in the back, opposite where the nerves were tingling, I went to see an ortho. I was definitely not prepared for what I was told. The doctor did tell me that had I not been fit and done all the exercises I had been doing, I would not have made it this far with my curve. I am now getting back into exercising and cannot imagine not being able to. I guess I could say it has saved my life.

May I ask why your doctor wants to wait until you are 60? My doctor was very adamant about me not waiting. I wanted to wait a year or so but decided that the stars were all aligned and went ahead and did it in July.

No one has mentioned thoracotomy. I'm just scared it might have to be done because the curve is soooo High and tight. When my surgeon saw me and said I had progressed, he talked about surgery and told me to come back immediately if my pain worsened. Well, when I did, he totally blew me off and I know he didn't remember what he told me. He didn't even have his notes with him from my last visit. I should have insisted that he go and get them. My single curve had also turned into a double major, the lower progressed 10* in less than 5 years. My doc, for some reason thinks that the surgery will cause me more pain than my curve.

The trouble with my neck is, that I have a compensatory curve in my C-spine AND severe hypokyphosis, where my back sinks in toward my rib cage instead of the gentle curve outward. That is a double whammy on my neck. I am hoping that if I get it fixed some day that it will relieve some pressure off of my neck, which hurts constantly. I wouldn't even care if they fused a couple of the lower cervical vertebrae as I am not flexible there anyway. Most of your head motion comes from the first two cervical vertebrae and the rest just allow you to move your head farther in the direction you want it to go. Sometimes I am so stiff that I move like I am already fused, but thankfully it's not that way all of the time. I am afraid of a "self fusion" because then there is nothing they can do unless they break bone.

I wouldn't be so upset by waiting if I didn't have to be on daily meds. He also told me I have a drug problem. But honestly, I go on and off the pain meds as I need them and don't need them. At the time I saw him last I was on a fentanyl patch. I have weaned off the meds hoping that it was "drug pain" but sadly it wasn't (you can read my thread I created during my weaning process - I forgot what I named it). I'm now taking percocet as needed. Sometimes more and sometimes less. I'm also taking ultram to give it a boost so as not to have to take so much. I'm on two muscle relaxants three times a day as well as getting steroid injections to help break up the muscle spasms every three months. But now I'm also on heart medication for an inherited arrythmia. That's what scares me about waiting until I'm 60*. Basically he told me if I'm at a constant 4/10 in pain and surgery leaves me with a 6/10, then I'm not going to be happy. But if I'm a constant 8/10 and am left with 6/10, I'll be happy. Why does he think surgery will leave me with a 6/10? I haven't seen much of that on here, although there are some that are left worse off painwise than before. And to be honest I have at times been a 10/10 and ended up in the ER.

When I was 18 I used to ride my bike about 5 miles a day, work out in the gymn and do aerobics faithfully at least three times a week. I graduated to teaching aerobics for a while but had trouble with the gymn (not paying me) and trouble with my heart rate (didn't know I had the arrythmia until about 4 or 5 years ago but in hindsight I can see I had it all along). Now I'm not as active as I would like to be. I used to always take my kids to parks and play right along with them, go on long hike up the bluffs, etc. Now I have a grandson, who is three, and like to take him to the park. The other day when I took him I had back pain from some of the simplest activities. I just don't think I should be having this much pain at the degree of scoli that I have. But I don't think they are taking into consideration my very rare and unusual curve pattern.

Sorry to ramble so much and THANK YOU for talking to me about your experience. May I ask what kind of nerve pain you are having from your surgery? What you described before almost sounds like shingles pain, but of course you and your doctor know better than me what is causing it.

Elisa
11-06-2011, 07:01 PM
rohrer01, I don't want to sound so simplistic here, but have you ever considered seeing a different scoliosis surgeon for another opinion?

rohrer01
11-06-2011, 07:09 PM
rohrer01, I don't want to sound so simplistic here, but have you ever considered seeing a different scoliosis surgeon for another opinion?

Insurance won't let me. If I do, I have to save the money and things are kind of tight right now. They raised our premiums and cut our coverage.

Marina63
11-07-2011, 12:43 PM
The insurance industry is such a racket! I fortunately have a job with the government and have excellent insurance coverage. But job security is non-existent and the possibility of getting laid off is always there.

I really have no nerve pain, per se. Just tingling and burning occasionally that has gotten much better since going to physical therapy. Funny you should mention shingles. My surgeon's nurse suggested the same thing to me as I had a rash all along my incision that started about 5 weeks post op. Went to my regular doctor and happy to find out it was not shingles. From what I have read here on the forum, the tingling and burning is very common and can go on for months post op. It bothered me more before I knew what it was.

Sounds to me like you really need some help in terms of getting your pain under control. I don't quite understand why your surgeon doesn't want to operate. Is he/she an ortho or a spine ortho?

Hope you get some resolution soon. There's no need to suffer needlessly in this day and age. Keep me posted.

rohrer01
11-07-2011, 04:15 PM
He's an SRS doctor, but the only one in the state so is VERY busy and has to be choosy because of the large patient load. He doesn't recognize me from visit to visit. The SRS lists another one in the Milwaukee area, but I can't seem to find a current location for him as he seems to have moved around quite a bit. He also doesn't have a website. I couldn't trust someone like that even IF I could pin him down and find him.

golfnut
11-07-2011, 06:13 PM
Rohrer,
I don't know how old you are now, but I don't see why your surgeon would want you to wait until you are 60. I had my surgery at age 60, but was in little pain prior to surgery and in pretty good physical shape which made my surgery and recovery fairly smooth. What state do you live in?

Marina63
11-07-2011, 07:09 PM
He's an SRS doctor, but the only one in the state so is VERY busy and has to be choosy because of the large patient load. He doesn't recognize me from visit to visit. The SRS lists another one in the Milwaukee area, but I can't seem to find a current location for him as he seems to have moved around quite a bit. He also doesn't have a website. I couldn't trust someone like that even IF I could pin him down and find him.

What does SRS mean?

rohrer01
11-07-2011, 11:37 PM
He's a member of the Scoliosis Research Society (SRS) and specializes in scoliosis surgery.

rohrer01
11-07-2011, 11:58 PM
Rohrer,
I don't know how old you are now, but I don't see why your surgeon would want you to wait until you are 60. I had my surgery at age 60, but was in little pain prior to surgery and in pretty good physical shape which made my surgery and recovery fairly smooth. What state do you live in?

Hello, I am almost 43. He wants me to wait until my curve is 60 degrees, and he figures at the rate of progression that I will be somewhere in my 60's (and he'll probably be retired!). I don't know why he picked that number. I have talked to other surgeons in the past that said 40 degrees and one that said 50 degrees. It seems that they each have their own favorite number. I just wish this wasn't such a numbers game and they would look at the whole person. It's kind of weird because partly why I want the surgery is because I know I am going to need it eventually as per nearly every surgeon I've talked to. If I need it eventually, then I won't have it looming over my head forever. I'm hoping that I can feel better sooner than later in life. If it doesn't work, I'm left in pain. So nothing will have changed (unless I'm left in worse pain). But if it works, I have a chance at being pain free or at least reduced for the life I have left. But giving this doc some credit, he said he would hurt me worse. If a doctor tells you he's going to hurt you, I think it would be wise to listen. He didn't say, but maybe he's not comfortable with my type of curve.

Marina63
11-08-2011, 09:03 AM
That sounds crazy to me. I am 48, turned 48 while I was in the hospital after my surgery. My doctor kept insisting that having it done now would be much better than waiting until I am older. I wonder what your surgeon's logic is?? You are in pain now. Basically you have to suck it up for another 15 or so years. Are you in the United States???? I am appalled!

golfnut
11-08-2011, 09:44 AM
It sounds crazy to me, too. I don't think your surgeon sounds very confident, which would have me running away from him at full speed! If scoliosis is the cause of your pain, I feel like surgery would certainly be better for you now rather than later. From what I have read, if you wait too long the results aren't as good and the recovery can be tougher. Also, I know that many on the forum were unable to exercise as much as they would have liked prior to surgery because of their pain. I truly believe it's important to be in top physical condition going into any major surgery. Good luck. I hope you can find a different surgeon who will take your insurance.

rohrer01
11-08-2011, 02:50 PM
That sounds crazy to me. I am 48, turned 48 while I was in the hospital after my surgery. My doctor kept insisting that having it done now would be much better than waiting until I am older. I wonder what your surgeon's logic is?? You are in pain now. Basically you have to suck it up for another 15 or so years. Are you in the United States???? I am appalled!

Yep, good ol' US of A. I was one degree off from the surgical criteria as a teen. They could have fixed it then and saved me a lot of trouble. Oh, insurance is wonderful. My husband pays $830 a month (his work pays his half) and my doctors visits and meds bring that total well over $1000 a month. He thought about cancelling it, but I reminded him that if I ever get this surgery it will probably cost over half a million dollars. Upon hearing that, he re-enrolled us in the plan.

rohrer01
11-08-2011, 03:02 PM
It sounds crazy to me, too. I don't think your surgeon sounds very confident, which would have me running away from him at full speed! If scoliosis is the cause of your pain, I feel like surgery would certainly be better for you now rather than later. From what I have read, if you wait too long the results aren't as good and the recovery can be tougher. Also, I know that many on the forum were unable to exercise as much as they would have liked prior to surgery because of their pain. I truly believe it's important to be in top physical condition going into any major surgery. Good luck. I hope you can find a different surgeon who will take your insurance.

The last time I saw him he didn't seem to think the scoli was the source of my pain, although every other time he agreed it was. I complained of pain since I was 12 years old and finally when I was 16 it got so out of control (unbelievable!), I suffered through a whole weekend, then my mom finally took me to a chiro on a Monday. When he took the x-rays, he broke it to my mom that that had been what was wrong. I felt bad because she broke down and started crying. We didn't have insurance and that's why she didn't take me to the doctor or let me go the ER for my pain. After that she took me the Phoenix Children's Hospital where they had a scoliosis clinic.

As far as my insurance, it's a stupid HMO. There are NO doctors on my policy that perform scoliosis surgeries on ADULTS, only kids. I have to get approval to go out of network. I can only get a second opinion from an in-network provider and there aren't any. Now my insurance, after fighting with them for several months to be able to see this doc, as I had seen him before, has the gaul to say that his facility is "their center for excellence" and I can only go there to get a second opinion. C'mon, what kind of a joke is that!? He's the only scoli doc there!

Elisa
11-08-2011, 03:23 PM
As far as my insurance, it's a stupid HMO. There are NO doctors on my policy that perform scoliosis surgeries on ADULTS, only kids. I have to get approval to go out of network. I can only get a second opinion from an in-network provider and there aren't any. Now my insurance, after fighting with them for several months to be able to see this doc, as I had seen him before, has the gaul to say that his facility is "their center for excellence" and I can only go there to get a second opinion. C'mon, what kind of a joke is that!? He's the only scoli doc there!

That is one of the craziest things I've ever heard.

I know I have thoroughly bashed our own BC medical system many times as they did absolutely nothing for my son and his scoliosis but in other aspects they have been very good and of course it's virtually free. Neither the Canadian nor the American medical system is perfect and I honestly don't even know where to begin to make things better for both but I wish I knew.

Marina63
11-08-2011, 03:27 PM
Yep, good ol' US of A. I was one degree off from the surgical criteria as a teen. They could have fixed it then and saved me a lot of trouble. Oh, insurance is wonderful. My husband pays $830 a month (his work pays his half) and my doctors visits and meds bring that total well over $1000 a month. He thought about cancelling it, but I reminded him that if I ever get this surgery it will probably cost over half a million dollars. Upon hearing that, he re-enrolled us in the plan.

Your surgery will probably be up there in price. Mine was $130,000. The hospital alone was $2000 a day!