Considering surgery

[tae_tap]

Not all surgeons do the SSBOB procedure and those that do will not tell you that it is going to work 100% or that a revision might be needed in the future. Both my curves were over 70 with the lumbar being worse and deciding upon this particular I did not come lightly without research and prayer. I was blessed to have one of the pioneers that developed SSBOB as my doctor. But like I said, my main concern was the pain level prior to surgery. I would work 8 hours and then go home hurting bad, go straight to bed to escape the pain.

Recovery has been a process as with any surgery, the only difference is with SSBOB exercise, stretching, and the jacuzzi dips are encouraged by the doctor. My pain level has gone down tremendously since I have been using the jacuzzi 3-5 times a day. Heck, I actually climbed a ladder this week to get up in my attic and I wasn't ready to die after it. Is there still pain? Yes, but I am only pushing two months post op and the soft tissue in my stomache and the rib removal pain are starting to ease. I still have hip pain that goes down my left leg, but with that I have to think about how many years I let my nerves be compromised and releasing that pressure off of them is going to take time for them to relax. I compare it to shutting you thumb in a car door, it may feel good to get the door opened but your thumb is going to throb for some time as the nerves calm down.

I have had my doubts and wonder if I decided upon the right procedure especially during the top pain levels, but as things have started to ease I know I made the best decision for me. That is another thing you need to be careful with, in the end you have to make the best decision for you. Many will have an opinion, at least in my family they did but when it comes down to it you are the one that has to live in your body. My family, with the exception of my husband pressured me into picking the full fusion from T1- sacrum but I kept coming back to the SSBOB and am happy with my decision. If I need a revision down the road (which I pray I won't) I know that I am strong enough to handle what is thrown at me.

The first step is getting to know your surgeon and as my doctor said many times that you need to become friends with your doctor. Then research, talk to some of your doctors patients, people on the forum,read up on it all, and prayer.

If you have questions ask them. You may not always get the answer you want, but the more knowledge you gain the better.

Tamena

[Wish2bstraight]

Not all surgeons do the SSBOB procedure and those that do will not tell you that it is going to work 100% or that a revision might be needed in the future. Both my curves were over 70 with the lumbar being worse and deciding upon this particular I did not come lightly without research and prayer. I was blessed to have one of the pioneers that developed SSBOB as my doctor. But like I said, my main concern was the pain level prior to surgery. I would work 8 hours and then go home hurting bad, go straight to bed to escape the pain.

Recovery has been a process as with any surgery, the only difference is with SSBOB exercise, stretching, and the jacuzzi dips are encouraged by the doctor. My pain level has gone down tremendously since I have been using the jacuzzi 3-5 times a day. Heck, I actually climbed a ladder this week to get up in my attic and I wasn't ready to die after it. Is there still pain? Yes, but I am only pushing two months post op and the soft tissue in my stomache and the rib removal pain are starting to ease. I still have hip pain that goes down my left leg, but with that I have to think about how many years I let my nerves be compromised and releasing that pressure off of them is going to take time for them to relax. I compare it to shutting you thumb in a car door, it may feel good to get the door opened but your thumb is going to throb for some time as the nerves calm down.

I have had my doubts and wonder if I decided upon the right procedure especially during the top pain levels, but as things have started to ease I know I made the best decision for me. That is another thing you need to be careful with, in the end you have to make the best decision for you. Many will have an opinion, at least in my family they did but when it comes down to it you are the one that has to live in your body. My family, with the exception of my husband pressured me into picking the full fusion from T1- sacrum but I kept coming back to the SSBOB and am happy with my decision. If I need a revision down the road (which I pray I won't) I know that I am strong enough to handle what is thrown at me.

The first step is getting to know your surgeon and as my doctor said many times that you need to become friends with your doctor. Then research, talk to some of your doctors patients, people on the forum,read up on it all, and prayer.

If you have questions ask them. You may not always get the answer you want, but the more knowledge you gain the better.

Tamena

Tame a,

What is SSBOB? This is the first thread that I have noticed this procedure?

Libby

[tae_tap]

Tame a,

What is SSBOB? This is the first thread that I have noticed this procedure?

Libby

Short segment bone on bone. This means less fused levels and the disks between are removed. Nothing is placed in return, but the bones are compressed and heal like a broken bone. Removing the disks allows for more flexibility and fusion happens at a faster rate, kind of like a broken bone healing. They are held together with two screws/dual rod system. This procedure is done anterior and a rib is removed. The most serious aspect of this procedure is many times a lung must be deflated and a chest tube installed, but under the supervision of an amazing cardiovascular surgeon there is minimal risks.

I felt it was a good option to start with in the hopes of not having a revision later on, but we all know even with full fusion we as scoliosis patients there is always a chance for revision down the road.

Tamena

[Cornerthree]

HI:

I am so very sorry that you are having to make the decision to have surgery or not. There is a thread that I recently started called "Surgery should be last resort." You may want to read this. Some people are glad they had it, others not. It is a very emotional issue as you will see. But what matters is: do you think it is time to turn to this last resort?

Only you can make the decision. Not your surgeon, and not the people here. Just you.

I'm writing because you said you were a yoga teacher and an actress, two activities/careers that I have often wondered about in relation to Scoli surgery. The loss of flexibility is something I mourn every single day and I am 25 years after my surgery. From what I've read here, how much flexibility you have will depend on how much you're fused. My surgical notes are old, and the surgeon did not say what my exact fusion was. The notes just say "Upper Thoracic to L 3-4. Speaking only for myself, every day of my life since my surgery I have longed to arch my back. Again, this is just me. I would give anything to attend a yoga class and feel the muscles in my back stretch. I have thought about attending a yoga class and just doing what I can, but watching others stretch when I will never be able to would upset me, so I avoid it. Again, this is just how I feel; others here may attend yoga and do what they can and feel OK about it. Maybe you could still run your class and just explain the moves you can't do and not actually demonstrate them. Only you can answer this.

I know a lady who's fusion is shorter than mine on both ends. But she can still not arch her back. Let no one mislead you: you will not be able to arch your back or hunch over while sitting. Your spine will be fused in the middle. Yes, I am being brutally honest, but you are an adult asking questions and I am being honest with you. No one was honest with me before my surgery; in fact doctors are still telling people they will be able to do anything they did before the surgery. But this is misleading, as it depends what it is that you did. Being a yoga teacher is like being a ballet dancer in that you really use your muscles and spine - and you will not be able to move your body and muscles like this again once you have surgery. Your spine will be permanently altered and rigid.

That is interesting about the actress you mentioned. People with scoliosis fused spines move differently, and I have tried doing a search to see which actors have had the surgery, but I could only find out names of those with Scoli, not the surgery. Please let us know what you find out. I spent a number of years on a theater stage myself in a musical show, but I was not in front of a camera. It would be interesting to watch a movie with an actor who had had the surgery so we could see if her movements look restricted.

One way for you to see how much having a fused spine would affect you would be to wear a rigid brace or corset over your torso for a week. This would simulate what it is like to be fused. This is the only way you would really have any idea.

I wish you the best in making this difficult decision and you have my sympathies in going through this.

[rockycarm]

7 months post op today. Have to say I have no regrets. I was so scared and yes, it did consume my every thought. You will eventually come to a point where you will make your decision and whatever it is you will be okay with it. I have to say I had 3 curves 62, 56, and 50ish and my pain was increasing with every passing year. At 52 I made the decision to have surgery and prepared mentally for 7 months. I did a lot of meditating and praying and it seemed to help. I am fused from T9-Sacrum and my flexibility is increasing with every passing month. Physical therapy has been invaluable. I have to say I am not sure about yoga at this point as I am still healing but feel as time goes on and I continue to do what I should things will be pretty much back to what I would call normal. My height decreased from 5'7" to 5'4 1/4" and now am 5.6 1/2". I didn't realize how bad my shape had really gotten as a result of my back. I always thought it was me getting old and gaining weight. This is not the case. I am walking tall and straight again and look forward to being totally healed. Lots of luck with your decision. Best. Rockycarm.

[tae_tap]

Cornerthree,
I am almost two months out and with my short fusion I am already able to touch my toes. Is there pain? A little only from having to stretch the muscles a little do to the inactivity. I can bend backwards and from side to side. I am walking three miles a day and as time goes it gets easier. I think aside of the soft tissue in my stomach my recovery is coming a little faster those with full fusion. This last week I have seen a Hugh difference in my pain and it has lowered tremendously.

I am not misleading, but I really don't think your fusion done 25 years ago can be compared to the technology and advances that has come over time. I am not saying the SSBOB is for everyone, but for me it was what I feel was the best decision at this stage of my life. Everyone has to weigh out the best for them with the help of a professional.

I hope things for you get better, it is horrible living so long with pain. I know how hard it is to live in pain and hope sometime you can find someone to trust with a possible revision to make things better.

Tamena

[Irina]

That is interesting about the actress you mentioned. People with scoliosis fused spines move differently, and I have tried doing a search to see which actors have had the surgery, but I could only find out names of those with Scoli, not the surgery. Please let us know what you find out. I spent a number of years on a theater stage myself in a musical show, but I was not in front of a camera. It would be interesting to watch a movie with an actor who had had the surgery so we could see if her movements look restricted.

Last week I've met a woman who had a revision surgery after Harrington rod. She is fused to the sacrum and I watched her every move - how she walked, how she sat, etc. She looked amazing and moved ABSOLUTELY naturally. I would never-ever tell that she is fused to the sacrum. She was happy and very optimistic and became a role-model for me!

[susancook]

If you have not tried a gravity inversion table I would encourage you to do so. I thought my doctor was crazy when he told me to use one prior to surgery, but it really did help. I am using it now in my recovery as well as jacuzzi therapy on a daily basis. Wish he had encouraged me to get a jacuzzi a long time ago and it might have helped with pain prior to surgery.

Tamena[/QUOTE]

I posted about a tilt table, but never figured out where to get one or where I could just try one out. What is a "gravity inversion table"? Where can I buy one? How much do they cost?
Thanks
Susan [PS: I am a nurse practitioner doing gyn and wonder after fusion if I can still do my work...I do international medical vol work. The position that I am in doing pap smaers and gyn exams requires a lot of bending. Hmmmmm.....]

[tae_tap]

Susan,

You can get the inversion table online at amazon, they run around $100.

As far as if you will be able to return to the current position, I can't answer that for our cases are probably different as far as fusion levels and such.

I am returning back to work 3-4 hours a day sometime next week, but I will be raising the table up to where I don't have to bend at all for the normal patients. And for those I have to do X-rays on I have been working my squats as too be cautious. I will also be wearing a corset brace so it will keep me from accidentally compromising my fusion. That will restrict the ability to fully bend forward and force me to squat until my next follow up to see how fusion has taken. With SSBOB fusion happens at a faster rate due to the bones being pressed together it heal like a broken bone.

I have seen my pain disappear quite a bit. I do have minor pain in the pelvic/hip area, but every day gets better. I will know after a few days if I am really ready to be back half days or not. I don't plan on going full time for at least another month, but we shall see how things go.

Good luck with your upcoming appointment. Keep us posted on what the doctor says. I have been praying for you for quite some time.

Tamena

[jrnyc]

didn't get anything from inversion table...besides a headache...
there is a reclining chair sold at some hardware stores in summer that tilts back about 3/4 of the way...and i find it somewhat comfortable for laying outside in summer...but that is about it...
glad if anyone gets any relief from true inversion table...
but i never did...
there is one advertised on TV...name of it is something like "Teeter Totter"..
not hard to find...
also, some sold at that store...the name of store is something like "Relax the Back"

jess

[susancook]

Susan,

You can get the inversion table online at amazon, they run around $100.

As far as if you will be able to return to the current position, I can't answer that for our cases are probably different as far as fusion levels and such.

I am returning back to work 3-4 hours a day sometime next week, but I will be raising the table up to where I don't have to bend at all for the normal patients. And for those I have to do X-rays on I have been working my squats as too be cautious. I will also be wearing a corset brace so it will keep me from accidentally compromising my fusion. That will restrict the ability to fully bend forward and force me to squat until my next follow up to see how fusion has taken. With SSBOB fusion happens at a faster rate due to the bones being pressed together it heal like a broken bone.

I have seen my pain disappear quite a bit. I do have minor pain in the pelvic/hip area, but every day gets better. I will know after a few days if I am really ready to be back half days or not. I don't plan on going full time for at least another month, but we shall see how things go.

Good luck with your upcoming appointment. Keep us posted on what the doctor says. I have been praying for you for quite some time.

Tamena

Tamena: Thanks for your support. It means alot. My intellect has decided that I should/need to have the surgery. My heart is unsure.....I don't know why. My sciatic pain is awful right now and I am going to request a third corticosteroid inj when I see the pain MD this week. What keep me functioning is all of the procedures: denervations and steroid injs. All are temporary....unfortunately. I returned on Sunday from 3.5 months in Fiji and Papua New Guinea doing volunteer medical work. There must be a God, as I was in almost no pain until I finished the projects, about 1 week ago. I hiked with a day pack and negociated terrible roads in a Land Rover. When I realize the pain that I am in right now and think back to the remote places we hiked and did medical care, I am amazed that I actually did it. I hope that after surgery I can do some volunteering again in India and/or Fiji.

I scheduled a second opinion with Dr. Serena Hu in San Francisco. Dr. Hart planned a fusion from T3 to sacrum and said that on a 1 to 10 scale, my surgery would be a "9". Yikes! I was hoping that he would say 6.

I will look into ordering a tilt table. Thanks for the info.

Best of luck negociating work and the demanding schedule. Don't hesitate to take a break and nap when youget home.

I am typing up a list of questions for Dr. Hart for tomorrow. Not many questions. I am most interested in what the xrays show on progression of my scoliosis which I know will be increased since I decidedly lean to the right now.

When I get the results, I am sure that I will finalize my decision and go for it. I am "In it to win it" and have decided that when I decide which surgeon to go with, that I will let go of all of my questioning and doubts and just do it with trust in his/her ability. I really want to see the operating room and all of the monitoring stuff. I'll probably be the only unmedicated person to go into the operating room and say hi to everyone. The more equipment there, the more confidence I will have.

Great to connect with another medical person. Take care and continue healing.
Susan

[thatrobyno]

Thank you!

Everyone's feedback and support has been super helpful. I'm seeing my surgeon on January 10th. My visits with him always make me fearful...although, honestly, he doesn't tell me anything I don't already know at this point. I check in with him every year. Initially, my curvature was progressing 3 degrees each year. But in the last three years, I've been in a holding pattern at 64 degrees in both my upper and lower curves. But while the curves have stayed at the same angles, my pain has increased exponentially. I cannot sit comfortably. I have an eight hour flight coming up next week and I'm nervous.

Oh, on a side note -- I just found an old journal I wrote when I was 20 (that was twenty years ago)...and I was complaining about how much my back hurt even then. It broke my heart to think about how many years I've lived with pain.

I'll keep coming back to the board, listening to your stories, asking you questions, and crying on your e-shoulders. Thanks to this fabulous community!