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thatrobyno
12-14-2012, 01:51 PM
Hi all. I've been lurking around here off and on for a couple years. I was always someone who said I'd NEVER get surgery for my scoliosis (64 degrees thoracic, 64 degrees lumbar), but my chronic pain has become so overwhelming, I'm truly considering it for the first time. I am turning 40 in less than two weeks and I feel like I'm turning 80. I've tried just about every non-surgical treatment under the sun and am at the end of my rope.

My fears -- I am an actress and yoga teacher and I worry I'd lose my ability to make a living (and these are my passion in life). Without freedom of movement, I don't know what I'd do. I'm terrified.

I'm also very nervous about the fact that while surgery might help my curvature from getting worse (I've been holding steady for the past 3 years with the help of exercise), I might end up with all sorts of complications and new pain and new medications.

I trust my spinal surgeon -- Dr. Christopher DeWald in Chicago -- and I've been seeing him for about 5 or 6 years. He said I'd really have to think seriously about surgery when the pain became overwhelming or when I hit 70 degrees. I see him on January 10th for my annual check-in and I think I might have to tell him I need surgical intervention.

I am getting so very depressed as I'm not living a full life with the amount of pain I have...but I'm scared that life after fusion will be even more limited. I'm between a rock and a hard place.

Please help -- any support, suggestions, or person stories would be greatly appreciated.
Thanks so much!

JenniferG
12-14-2012, 02:50 PM
Welcome to the forum! It sounds like you're going through that really difficult phase when you're deciding there's no choice but to go for surgery. On the one hand, it's hard to imagine you need such major surgery, and if you never thought you would, it's even harder, but eventually, it gets easier as you become more accepting. I guess we're all different, but that time between being told by my surgeon I needed surgery within 12 months and becoming accepting of it, was very, very hard. It took over my every thought, I stopped sleeping and I became depressed. I cancelled my first surgery date and went on anti anxiety meds which helped a lot. Then came the next phase, acceptance that it had to happen, and getting as fit as I possibly could, in order to be in the best physical condition possible for the surgery. That phase was far easier and the fitter I became the more I knew I could do this, and by the time my date came around again, I wasn't nervous at all (after being absolutely terrified.) I just wanted to get it over with and get on with my life. I also enjoyed being fit so much, I decided I'd continue exercising forever, and I still do.

As for flexibility, again, we're all different. Physically, it depends on how low your fusion extends, but there are some of us here with fusion to Sacrum and pelvic fixation who can do pretty much anything we want. Others not so much, so it's really impossible to tell, especially without more information, how much flexibility you'll lose. But as a yoga teacher, you're likely to have good flexibility and eventually you should regain much of it.

I wish you well and recommend you ask as many questions as you can because part of the fear of this surgery is the unknown. Get your answers, and much of the fear dissolves.

thatrobyno
12-14-2012, 04:24 PM
Thank you so much for you kind note. I appreciate it more than I can say. I am so relieved to hear I'm not the only one who had doubts when I was told I should have surgery. I almost wish I had no choice in the matter...if the decision was cut and dry, I think I wouldn't be in so much emotional pain about my choice. I started taking some meds and seeing a therapist to help me make a decision.

I find your signature (NO PAIN! my goodness, that's a dream of mine!) to be inspiring. Your right hip was very similar to my own and it's where much of my discomfort takes place the days. I can barely sit for more than five minutes without intense discomfort. I see in your "after" photo that your hip is dropped dramatically and it sounds like you have had a great amount of relief in that location.

The absolutely truth is while I'm terrified of being limited in movement, these days I'm already limited in the activity I can do because of my pain. So, while I'm so scared about the potential loss in my life, I'm already facing that loss without surgery.

This has been a very long road, but it seems to be coming to an end.

jackieg412
12-14-2012, 05:35 PM
HI, I am Jackie. I see that you may be living near me. I live south of Chicago. Since you have your Dr appointment coming up---start writing down questions. Bring someone with you when you go.I have had surgeryalready,but I had to seek out many opinions first. You can private message me and I will say more on that.
It is a huge thing for anyone, but in your line of business,you may have to create different ways to still get done what you need to.
No one will ever tell you differently{that is the people already fused} You will be able to do somethings,but maybe not others. Or you will have to change the way you get to the same goal. I know that I have to to it that way.
Ed has a major level fusion,but seems very capable,so he may be a good source of info.
I know, I remain worried about aging with this fusion. My entire spine is fused.
This may not help your debate,but it is necessary to be realistic about maybe needing to change some things after fusion surgery. Ask any one of us--we are here to help!

thatrobyno
12-14-2012, 06:14 PM
Hiya Jackie! Thanks for your note. How long ago did you have your surgery? Any regrets? You mentioned it was your whole spine -- I'm assuming you mean T1--sacrum or so, is this right? I'd be close, although my doc has always said he can't guess how far down fusion will extend until the actual surgery.

Most importantly -- has your quality of life improved?

JenniferG
12-14-2012, 08:29 PM
thatrobyno, you are not alone. There are several regulars here whose greatest fear was/is the loss of flexibility. Although we vary, the vast majority of us manage to get on with life as normal, doing some things slightly differently from before. But I think most of us too, do notice the loss of flexibility initially. I think it's a matter of weighing up all the pros and cons, when we make the decision for surgery.

I have no pain whatsoever, but when I look at that photo of my hip, I wince. That photo is the only photo I have of what my back looked like. Mostly I just ignored it, was in denial, but seeing that photo certainly brings it home to me that I made the right decision. My greatest difficulty pre-op was standing. I'd dread a queue at the Post Office, the supermarket, the bank. Standing at the kitchen bench was a trial. But now I can stand all day if I want to.

Bending isn't a drama. I crouch or spread my legs and go down like a giraffe. Twisting round to see over my shoulder is less easy, so I need to turn my whole body. There isn't anything I can't do. I compare that to increasing daily pain, my severe pain when standing for anything longer than 30 seconds, to the increasing deformity, and the sure knowledge it was all going to get worse. For all these reasons and more, the decision was made for me. It didn't make it any easier, and many here struggle with that decision. I say this because I don't want you to think you're alone in this. I hope you hear from others who feel the same way.

susancook
12-14-2012, 08:59 PM
I have not had surgery, but I think that my time has come....I have had 2 denervations, 2 different steroid inj twice [2 different locations]. I was at the airport yesterday waiting in line. I told the customer agent that I couldn't stand for long. Fifteen minutes later, I had lying on the floor in agony. I think that my time may also have come to consider surgery.

I have gone through all that you said, denial, tears, anger, depression....Anyone who is not frightened about this surgery is nuts! It is scary, and really being a optimist....I am surprised how pessimistic I am ! I'm sure that I will have a dural tear....on and on. Then I think, I can't lie on the floor for the rest of my life when there is a line. I read something that Ed wrote [I can try to cut and paste and send to you on your reg email as it is too long]. About 2 sentances in, I started to cry. He really spoke to my fears and the fact that I needed to either go for it or just lie on the floor. After a good cry, I decided to reconsider the surgery. I have an appointment next Tuesday with my surgeon and then I will have a second opinion and then I will go with one of the surgeons....I think. For me, I have decided to "let go" and put my complete trust in whatever surgeon I choose, and relax [not going to be easy] and TRUST.

Can you do yoga and be an actress? I don't know. Can you continue to live like you are [and join me lying on the floor]? I don't know for you, only you know.

I wish you the best in your decision making. Meet up with women who have had your projected surgery in Chicago and check it out....your doctor will give you some names. Susan

thatrobyno
12-14-2012, 11:19 PM
I have no pain whatsoever

I aspire to your current condition :)

It's the twisting I'm mainly concerned about from a career-perspective. Having the ability to twist toward camera is integral to my work. I've been trying to find out how long Isabella Rosellini's fusion is! I wish I knew.

You're very kind to be so generous with your answers and support. Thank you.

thatrobyno
12-14-2012, 11:21 PM
Then I think, I can't lie on the floor for the rest of my life when there is a line. I read something that Ed wrote [I can try to cut and paste and send to you on your reg email as it is too long]. About 2 sentances in, I started to cry. He really spoke to my fears and the fact that I needed to either go for it or just lie on the floor. After a good cry, I decided to reconsider the surgery. I have an appointment next Tuesday with my surgeon and then I will have a second opinion and then I will go with one of the surgeons....I think. For me, I have decided to "let go" and put my complete trust in whatever surgeon I choose, and relax [not going to be easy] and TRUST.

Can you do yoga and be an actress? I don't know. Can you continue to live like you are [and join me lying on the floor]? I don't know for you, only you know.

Susan -- you are singing my song. I spend most of the time I am not working on the floor. Ugh. I'm so sick of my floor :)

I am definitely going to ask my surgeon for some names of people who have had surgery. I want to leave no stone unturned.

LindaRacine
12-14-2012, 11:32 PM
Hi all. I've been lurking around here off and on for a couple years. I was always someone who said I'd NEVER get surgery for my scoliosis (64 degrees thoracic, 64 degrees lumbar), but my chronic pain has become so overwhelming, I'm truly considering it for the first time. I am turning 40 in less than two weeks and I feel like I'm turning 80. I've tried just about every non-surgical treatment under the sun and am at the end of my rope.

My fears -- I am an actress and yoga teacher and I worry I'd lose my ability to make a living (and these are my passion in life). Without freedom of movement, I don't know what I'd do. I'm terrified.

I'm also very nervous about the fact that while surgery might help my curvature from getting worse (I've been holding steady for the past 3 years with the help of exercise), I might end up with all sorts of complications and new pain and new medications.

I trust my spinal surgeon -- Dr. Christopher DeWald in Chicago -- and I've been seeing him for about 5 or 6 years. He said I'd really have to think seriously about surgery when the pain became overwhelming or when I hit 70 degrees. I see him on January 10th for my annual check-in and I think I might have to tell him I need surgical intervention.

I am getting so very depressed as I'm not living a full life with the amount of pain I have...but I'm scared that life after fusion will be even more limited. I'm between a rock and a hard place.

Please help -- any support, suggestions, or person stories would be greatly appreciated.
Thanks so much!

Hi...

Since flexibility is such an issue for you, I think it would be important to find out what levels are going to be fused. I think there are mostly 2 things that have the great effect on flexibility: a greater number of levels, and fusion to the sacrum. Unfortunately, with a large lumbar curve, it's likely you'll either need to be fused to the sacrum now, or you'll stand a fairly large chance of needing revision to the sacrum in the future. Dr. Dewald will almost certainly address these issues with you.

While there are relatively few of us who would actually choose to have scoliosis surgery if it were really a free choice, having the surgery is not the end of the world. There are hundreds here who have survived scoliosis surgery, and have gone on to lead productive and fulfilling lives. You probably will as well. Having surgery usually comes down to being the lesser of two evils (have the surgery to hopefully reduce your pain and increase your function, or don't have the surgery and live with the pain and loss of function). I hate the loss of flexibility, but love that I no longer have pain and can pretty much do what I want (as long as it doesn't involve things like putting a sock on my right foot or picking things up from the floor without something to hang on to).

If you're halfway intelligent, making the decision to have the surgery will be a process. Starting to talk about it is just the first step in a long journey.

Regards,
Linda

thatrobyno
12-15-2012, 10:55 AM
hate the loss of flexibility, but love that I no longer have pain and can pretty much do what I want (as long as it doesn't involve things like putting a sock on my right foot or picking things up from the floor without something to hang on to).


Hi Linda. Many thanks for your input. The idea of having a day without pain is enough to make me melt into tears.

Um...why can't you put a sock on your right foot!?

jackieg412
12-15-2012, 02:36 PM
Hi Again,
My spine is fused t-2 to pelvis . I also have a three level fusion in my cervical. I will point out that I can no longer do the job that I am trained for. I am looking for a new one, I have not been sucessful in that and have been trying for more than a year. Yes your work can let you go when you can no longer do just a part of the job. Knowing what I know now---while very uncomfortable---I really needed to work a few more years. If you private message me I will answer more on this.

tae_tap
12-15-2012, 06:08 PM
I recently had surgery, October 22 to be exact. I am 34 a wife and mother of four children. My curves were worse than what you have and the pain made me feel like a 90 year old woman. I opted to try Short Segment Bone on Bone fusion, but I went into surgery wanted to be rid of the pain and other issues being caused by the curves. I wore a brace from 12-15 and all it did was maintain the degrees during that time period. One of my concerns that made me try the SSBOB was the fact that I am a PA for a podiatrist and do everything from x-rays to procedures and wanted to retain my mobility and range of motion. We fused T12-L2 with removing the disks in between. Now in saying this my spine is not perfectly straight and I am not completely out of pain, but it is still early and it could take months to get there with any surgery. However, everyday is a little better and I have a positive feeling that the pressure of rotating and aligning with the pelvis is going to eventually take my pain away.

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.

Making the decision to have surgery alone is tough and the recovery is tough, but living everyday in pain not wanting to do anything but escape ones body makes having the surgery worth it. No matter what you decide, you will find this forum and the people on it comforting, encouraging, and some will become close friends through the process.

I will pray for you as you travel this road that can be scary and exciting all at the same time.

Tamena

thatrobyno
12-15-2012, 08:34 PM
If you have not tried a gravity inversion table I would encourage you to do so.

Making the decision to have surgery alone is tough and the recovery is tough, but living everyday in pain not wanting to do anything but escape ones body makes having the surgery worth it. No matter what you decide, you will find this forum and the people on it comforting, encouraging, and some will become close friends through the process.

I will pray for you as you travel this road that can be scary and exciting all at the same time.

Tamena

Hi Tamena! Thanks. We had an inversion table but it broke recently. It did help a lot. And I recently got a membership to a gym with a jacuzzi and a therapeutic warm pool. I intended to spend the next could months living in it :)

Wow...my surgeon didn't give my the option of starting the fusion so low. I wish I could do that! I'll ask the next time I'm there.

I hope you're feeling well. How has your recovery been so far?

Best to you!

titaniumed
12-15-2012, 08:59 PM
From your username, could you be a Robyn?

Anyway, welcome to the forum. I could have used your 1st post a few years ago, even though I donít teach Yoga. Now as far as acting, I could do a pretty good Tin man if provided with the silver makeup. Iím not gay, but could pull it off....(smiley face) The scarecrow (Ray Bolger) part would be impossible....I would have to pass on that one.

Actually, the Tin man thing might sound kind of scary but you know, its not that bad at all. I have adapted well and Iím extremely pleased with what happened in my surgeries....I think that having a positive attitude has served me well, that and simply keeping the oil can full.....the oil is for the mind, not the arms and legs. Its to keep the mind lubricated and open for acceptance should it be needed.

Reading and posting here is a good start. You can PM anyone here and talk to people on the phone if you wish, going to your local scoliosis meeting would be a good thing. I donít know if you ever braced, but itís the same feeling. I wore a brace and skied in a brace years ago so was used to the feeling of a full fusion.

The decision making process is one of the hardest parts. There are many threads here on this subject, some cases easier, some harder than others. I think the parents of the kids have it the hardest, they truly freak out. If I had a child with scoliosis I wouldnít know what to do.....40 and 50 year old adult decisions with major pain events are a little easier because it can be a downhill battle especially when degeneration runs rampant. Pain is a good motivator, it tips the scales of decision.

Its obvious that posters here with many posts have put thought into the subject.....those regulars have had their lives impacted by scoliosis and generally strive to learn and communicate feelings about the matter. I personally have attended meetings and have bought surgical books to learn exactly what happened, what was truly involved, and to answer many of my general questions about the difficult subject of medical science. Why does this happen? and so forth. Of course, it never ends, and in the beginning you have all these medical terms that you learn. Spondylosis,spondylolisthesis, spondylitis, man-o-man its hard to remember this stuff! I wouldnít worry about this, its just the kind of things you will see mentioned here compounded with layman theory since we are not doctors.

The main thing is that you have questions....Go ahead and ask away.

I have a thread with mobility pictures in my signature. You will see me bending, fingertips 4 inches from the floor, and so forth. With a full fusion, itís a process getting to your feet. After I got home from surgery, I didnít think I would ever be able to get to my feet. I do get to my feet, but it took a while. The stretching has to happen slowly while your soft tissues heal. It took me 8 months till I was installing socks without a sock installer. Now I have no issues at all with it. It was an exercise in technique that took a long time to master.

Donít forget that oil can!

Ed

tae_tap
12-16-2012, 08:36 AM
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
12-16-2012, 09:35 AM
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
12-16-2012, 11:08 AM
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
12-16-2012, 02:03 PM
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
12-16-2012, 03:17 PM
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
12-16-2012, 04:06 PM
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
12-16-2012, 06:29 PM
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
12-17-2012, 06:34 PM
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
12-17-2012, 06:50 PM
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
12-17-2012, 09:30 PM
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
12-17-2012, 11:48 PM
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
12-18-2012, 10:47 AM
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!