Hello, I am new here. I have degenerative scoliosis and am scheduled to have ...

[Irina]

Hi Sheryl,

I wore basic t-shirts under the brace - you don't want a loose t-shirt under the brace as it will fold and irritate you. When it got warmer and I started driving and doing a little grocery shopping, I always wore brace over my clothes to keep people away from me I was afraid of somebody bumping into me and thought that brace would be like red traffic light.

I didn't care for any bras during the first month, but then I wore front closure bras. I didn't want any hooks to be around my scar. I had some sports bras, but putting them on and off was very difficult. T-shirts, yoga pants, sweat pants, and pajamas was all the clothing I needed in the beginning.

[TXMom]

Hi Irina,

Hi Sheryl,

I wore basic t-shirts under the brace - you don't want a loose t-shirt under the brace as it will fold and irritate you. When it got warmer and I started driving and doing a little grocery shopping, I always wore brace over my clothes to keep people away from me I was afraid of somebody bumping into me and thought that brace would be like red traffic light.

I didn't care for any bras during the first month, but then I wore front closure bras. I didn't want any hooks to be around my scar. I had some sports bras, but putting them on and off was very difficult. T-shirts, yoga pants, sweat pants, and pajamas was all the clothing I needed in the beginning.

Thank you, Irina. I really appreciate your answer. That is good advice. I have been stocking up on nice tees because I kind of thought they might be the most comfortable. I guess a few thin camisoles or knit bras might be nice too. I agree that I don't want hooks on my back. And you're right about wearing the brace over your tee shirts. It's probably a very good idea to keep strangers and even acquaintances at more than arms length. That's all one would need -- a nice well meaning person to come up and slap/pat hard on one's back! Ouch!!!!! I can see a brace as being a red light! Maybe I need neon tape on it! HaHa!

Were you able to bend at all after your total recovery? I'm trying to understand what is possible after fusing down to the Sacrum?

Thanks so much, Irina! I truly appreciate it.

[TXMom]

Hi Ed!

Welcome to the forum Sheryl

We really don’t know what to expect other than from reading testimonials, and they can vary. I think the most important thing to have is a good attitude, and accept the change that will happen. Change is always a hard thing, and adapting is necessary. You will master patience as you heal.

The meds they use in the hospital work quite well, and they should keep your initial pain under control.....What can be painful is the eventual weaning process, this is never an easy thing. For me, after surgery, the pain I had was mainly in the lower GI due to taking medications....Constipation can happen and it can be extremely painful.

I battled sciatica for 6 years, had the horse kick in the greater trochanter, and the flame thrower on the top of my right ankle.....fun, fun, fun. My surgical decision was based on the brutal sciatica pain, and knowing that things would not improve in the long run. I just wanted to help justify your decision. In the end, I couldn’t dodge surgery anymore, and really had to get it done. Surgery saved my life. If you have lumbar herniation’s in a large scoliosis curve, these can be especially difficult to deal with.

I didn’t buy anything because I’m cheap. LOL And I wouldn’t buy much since you do have a good support team, and they can get what you need as you go. My insurance company supplied my grabber and walker....and there are 200 walkers in every nursing room basement, and they will gladly give you one for free as they cant get rid of them fast enough. With me, I could never find my grabber, and wasn’t looking for it, so it wasn’t of much value. You will learn to pick up clothes with your foot and big toe. You simply grab, bend your knee and grab from behind. (An example of adaptability) Personally, I would wait to see what they give you at the hospital. I have a beautiful Lazy Boy recliner with heat and vibration, it was an $1800 chair, and I don’t sit in it anymore......They should at least give you a sock installer in the hospital. Loose socks and clothes are easier to deal with.

I see you are doing a 2 stage. Will this be spaced 2 days apart?

Ed

Hey Ed, One question. I'm not able to see your photos of post recovery bending and twisting. The link won't work for me.

[titaniumed]

I'm not able to see your photos of post recovery bending and twisting. The link won't work for me.

I know. It was due to a software update on the NSF server. I could strangle most software developers with my bare hands, and go to jail for it.

Much of my scoliosis related data is on an older computer of mine which I need to do some work on.....I should simply take some new photos down at work. I just have to remember to do this again!

But I do have skiing video! LOL I’m in the red jacket.

Putting on ski boots is the ultimate test for full fusion. Its one of the hardest things I have had to figure out after scoliosis surgery.

https://www.youtube.com/watch?v=4tEypv3Vz8o

Ed

[rjmacready]

Know Your Rights

Hello. Just a few thoughts from someone who is in your position. I would suggest your surgeon specializes in ASD procedures. No thanks to anyone here, I discovered Dr. Lawrence Lenke had moved his practice from St. Louis to NYC. Here is his bio:
http://vesta.cumc.columbia.edu/ortho...php?id=+ll2989

I'm not an expert such as others on this forum. I will share with you, verbatim, what Dr. Lenke told me on Dec 7: "You are agreeing to the most invasive, complications ridden, painful surgery on the books. There is nothing that is comparable." Sobering words from a world renowned expert, but when you have a 85 degree throacic curve as do I, there are not a lot of options. The choices boil down to drugging yourself into oblivion in a wheel chair, or rolling the dice. I won't live the remainder of my life in a wheel chair.

My T1-Sacrum Medtronic SOLERA hardware installation, plus various level osteotomies and resections is slated for July. I won't bore you with the full surgical plan. I fully expect complications, obstacles and a boat load of pain. The procedure will be a 12 hour marathon. I will have my entire blood volume swapped out as banking your own is not an option for a procedure of this enormity.

My main counsel would be make sure your instincts tell you this is the right person for the job. You have the right to a fully detailed surgical and pain management plan in advance. Faith in your surgeon and their depth of experience I feel are paramount. But as I said, I'm no expert. I do know this is a one way trip; no refunds or do overs. I wish you the best of luck. RJM

[TXMom]

Hi Ed!

I know. It was due to a software update on the NSF server. I could strangle most software developers with my bare hands, and go to jail for it.

Much of my scoliosis related data is on an older computer of mine which I need to do some work on.....I should simply take some new photos down at work. I just have to remember to do this again!

But I do have skiing video! LOL I’m in the red jacket.

Putting on ski boots is the ultimate test for full fusion. Its one of the hardest things I have had to figure out after scoliosis surgery.

https://www.youtube.com/watch?v=4tEypv3Vz8o

Ed

First of all, Ed, please don't strangle the soft ware developers. LOL We will miss you, your experiences and certainly a fine video of you skiing through the trees. I couldn't ski through trees when my back and knees were good! HaHa! Super impressed am I! Thanks for the encouragement. As for the ski boots, how the heck you ever got them on, is beyond me. They are enough of a challenge when you can bend down to the ground!

Sheryl

[TXMom]

Hi RJM,

Hello. Just a few thoughts from someone who is in your position. I would suggest your surgeon specializes in ASD procedures. No thanks to anyone here, I discovered Dr. Lawrence Lenke had moved his practice from St. Louis to NYC. Here is his bio:
http://vesta.cumc.columbia.edu/ortho...php?id=+ll2989

I'm not an expert such as others on this forum. I will share with you, verbatim, what Dr. Lenke told me on Dec 7: "You are agreeing to the most invasive, complications ridden, painful surgery on the books. There is nothing that is comparable." Sobering words from a world renowned expert, but when you have a 85 degree throacic curve as do I, there are not a lot of options. The choices boil down to drugging yourself into oblivion in a wheel chair, or rolling the dice. I won't live the remainder of my life in a wheel chair.

My T1-Sacrum Medtronic SOLERA hardware installation, plus various level osteotomies and resections is slated for July. I won't bore you with the full surgical plan. I fully expect complications, obstacles and a boat load of pain. The procedure will be a 12 hour marathon. I will have my entire blood volume swapped out as banking your own is not an option for a procedure of this enormity.

My main counsel would be make sure your instincts tell you this is the right person for the job. You have the right to a fully detailed surgical and pain management plan in advance. Faith in your surgeon and their depth of experience I feel are paramount. But as I said, I'm no expert. I do know this is a one way trip; no refunds or do overs. I wish you the best of luck. RJM

Hi,

Thank you for your reply. I do understand that this is a super serious surgery, just as you said. My doctor definitely specializes in scoliosis and fusion techniques. He studied my films with his colleage and really wanted to try a lesser fusion with some minimally invasive work. He concurred with my Austin doctor, that the full nine level is needed. I am not deluding myself that this will be the most physical pain that I have ever had and if you knew me, you would understand how much pain from other illnesses and surgeries that I have had. I am so sorry that your fusion will be so very intense and so long. I have been told about the blood transfusions as well. I am expecting that I will need two. My doctor will spin my blood and use blood from their bank as well as some of mine to "rehydrate" my system. I don't know how to explain it in medical terms. I asked about banking blood and he said that it isn't possible for this type surgery. You just cannot bank enough blood in a short time. I am just as worried as you are, and I know that my recovery will take a long time. My surgeon has not sugar coated anything, which is exactly what I asked him to do -- shoot straight with me and tell it like it is. I like to know everything, or at least as much as possible, up front. That is how I mentally work through things and possibly work out a solution ahead of the need for one.

I will be praying for you. Perhaps there will be no complications or problems and you will feel just wonderful after you've had a chance for recovery. I promise not to forget to keep you in my thoughts and prayers. I certainly don't blame you for not wanting to spend your life in a wheel chair. I don't want that for you either. My choice would be to spend forever on Norco and endure permanent damage in my legs and feet, and possible incontinence. I can't live like that either. Please know that we all care about you and please let us know how everything goes. Thanks so much for posting this.

Big Hugs,
Sheryl

[Irina]

Hi Sheryl,

I am fused T6 to sacrum - I am pain free and don't feel any limitations. I cannot bend from the waist, but I can bend from the hips. You will be using your knee and hip joints to compensate for a fused back. I easily pick things up off the floor - just squat and lean forward a little. Part of my workout routine is abdominal exercises on the floor. I am getting on and off the floor without any issues and I don't need to lean on anything to get up. In fact, people who didn't know me before the surgery, don't notice anything unusual in my gate, movements etc. If I tell them my story, they say that they would have never guessed that I had these problems with my back. The only thing they say they notice is that I always have this perfect posture.

I am wishing you all the best! I know how scary this surgery is, and we are here to help.

[titaniumed]

various level osteotomies and resections is slated

Chet, thx for letting us know....I think you are in a good place now.

Did he say what levels?

Ed

[Chihuahua Mama]

Hi Ed,

Thanks so much for your reply. Yes, my surgery will take place on two separate days, a Wednesday and a Friday. They will put in the "cages" on Wednesday in late February and then the rods and screws on Friday. I will be in the hospital anywhere from a week to ten days and then either back to Central Texas where home is, or stay at the rehab center in Houston.

I finally had some tests given to me last October and all the pain, tiredness and nerve pain made sense. I certainly wasn't expecting the degenerative scoliosis diagnosis. I have studied many posts here on this forum and it seems to be that no matter the way the scoliosis came to be, the type of surgery seems to be the same. I made the decision to have surgery because I cannot live like this any longer. I can't do a lot of what I used to do and the pain just tires me out and keeps me tied to the meds.

I am always impressed by your posts and what you are now able to do. Did you wear a brace post surgery? I will have one for about three months, which I know will drive me crazy, but it is necessary. What was the most difficult thing for you to get used to post surgery? Thanks for the tips on the clogging of the digestion system. I came to expect that after reading. I might want Miralax in my IV! Ha!

Anyway, thanks so very much for your help, Ed. I truly do appreciate it. I am very nervous about the surgery, the pain afterwards and my limitations going forward. I know that I must do this, however, if I ever want some semblance of normal again.

Hi Sheryl, Actually I found my brace to be a huge comfort. Putting it on and off was the part I hated but once on, it became my lil "blankie" I found it kept me from making mistakes and things just hurt less when I wore it. Everyone is different but I wore mine over my clothes and even after I was cleared to drive, I didn't worry about what others thought. Maybe I'm in a backwoods area, but people even made comments, "OMG what happened to you?" "Did you get in a car accident" etc. When I had my surgery in California, no one ever said a word and I notice many others in braces so it probably depends on where you live. I haven't seen anyone in a brace since my surgery so perhaps there are just more scoliosis surgeons in So Cal, therefore more surgeries? Just a guess.

I hope your brace becomes your BF for a while. What I hated (and still do) is the 'bottom buddy' and the difficulty in bathroom duty. I found wearing mini-pads helped a lot for what that's worth.

Best of luck!

[rjmacready]

Surgical Plan

Chet, thx for letting us know....I think you are in a good place now.

Did he say what levels?

Ed

Hi Ed and Sheryl, The whole plan: 1) Posterior spinal fusion w/ SOLERA hardware system from T1 to Sacrum
2) Posterior column osteotomy @ T9-L2
3) Vertebral column resection @ L3
4) Anterior spinal fusion from a posterior approach @ L2-4

Dx: Flat back syndrome, kyphoscoliosis, pseudarthrosis, coronal imbabance. Thoracic curve 85+ degrees, no #'s on deformities.
Sheryl:
I fully expect complications as my current situation resulted from a bungled spinal fusion w/ BAK interbody fusion cages @ L3-4, L4-5 in 1998. I don't mean to paint an overly pessimistic picture for you. You asked about women who have undergone this. I have a dialog with a wonderful woman from Australia who is 4 years plus out from a complete fusion, just as you and I are facing. She was out of the hospital in 6 days, and going for long walks at 3 months post op. 18 months later she was hiking, biking, rafting, doing everything she used to do. Not one complication, very little post op narcotic use. If it had not been for her story I might have found a reason to put this off even further than I have. Now my biggest worry is the entire health care insurance system will be in such upheaval by July my current insurance(s) may not cover the costs. I'm guessing this is a $500K production from soup to nuts, that is for me. From pre op testing to being discharged from a month long stay in an inpatient rehab center; the entire bill is going to be astronomical. Best Of Luck, Chet

[titaniumed]

2) Posterior column osteotomy @ T9-L2
3) Vertebral column resection @ L3

This is not your everyday scoliosis surgery shopping cart.....Are you pitched forward and looking down?

This is a 5 level osteotomy with a VCR below it. There is nobody on this forum that I can remember with this much work, maybe Linda can remember. (Pretty hard to forget)

Dr Lenke can handle this you know, and you can too.

Ed

[rjmacready]

Pitching forward indeed

Ed, All I see when I walk is my feet. Good call. It is not particulalry encouraging that this amount of work is unusual. I obviously let it progress way too long, for reasons that I may never fully understand. Any sort of activity lasting more than 20 minutes is excruciatingly painful. Now it is up to the good Dr. Lenke, who did not hesitate to take my case. He asked me to try and lay flat on my back- I was able to do so with some difficulty. This pleased him, saying "you just shaved a few hours off the procedure time". I suspect he sees cases where the procrastination has allowed the spine to become completely rigid. He had a gang of fellows and residents trailing behind him, so he must be at the top of his game. I'll go in knowing he gives me the best chance of success, I did not get that feeling from Kebaish. The approach at Hopkins was disjointed and unsettling, they made obtaining information like a surgical plan seem like I was prying. If I had only known Lenke had moved to NYC, I would have never spent all that time @ Hopkins. I would be well into my recovery by now had I known, but at least I did find out before, and not after! Chet

[golfnut]

Dr. Lenke is the best! You are in good hands.

[titaniumed]

Ed, All I see when I walk is my feet. Good call. It is not particulalry encouraging that this amount of work is unusual. I obviously let it progress way too long, for reasons that I may never fully understand. Any sort of activity lasting more than 20 minutes is excruciatingly painful. Now it is up to the good Dr. Lenke, who did not hesitate to take my case. He asked me to try and lay flat on my back- I was able to do so with some difficulty. This pleased him, saying "you just shaved a few hours off the procedure time". I suspect he sees cases where the procrastination has allowed the spine to become completely rigid. He had a gang of fellows and residents trailing behind him, so he must be at the top of his game. I'll go in knowing he gives me the best chance of success, I did not get that feeling from Kebaish. The approach at Hopkins was disjointed and unsettling, they made obtaining information like a surgical plan seem like I was prying. If I had only known Lenke had moved to NYC, I would have never spent all that time @ Hopkins. I would be well into my recovery by now had I known, but at least I did find out before, and not after! Chet

Chet, The past is the past......Its time to turn a new page. My surgeon asked me several times why I waited so long, I didn’t have an answer. I didn’t think I needed to answer.....I was waiting for technology and all the chips to fall in the right place.

I didn’t realize what kind of condition you were in until Dr Lenke’s report. There are a lot of “heavy hitters” around here.

With the pain you have been through, I don’t think its going to matter much. The patients that have had the really bad pain before, do much better after surgery....

Its going to be a huge improvement....

Ed