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joyfull
02-11-2010, 12:12 AM
Just when I've made my decision to have surgery with Dr. Lonner in New York, I'm having second thoughts.

I have absolutely no pain and never have had any. I've raised two sons without incident. I was told that my breathing capacity is reduced by 50 percent. However, I can do 1/2 hour on the treadmill easily and hardly notice any problem in going through my day (I am a teacher.)

However, my thoracic curve of 90 degrees is not pretty and I'm concerned that it will progress, that I could develop problems and it will be too late to have the surgery.

But then again it could not.

My posture is excellent and people tell me that they hardly notice it. I don't know if I would do this if it was only for cosmetic reasons.

I've lived 57 years this way with no problems, so I guess I'm different that many of the people here.
How do I know that I wouldn't be able to live to a ripe old age this way? How do I know that I won't have chronic pain afterward? I've read here about people's relatives who've had long, full lives with severe scoliosis.

Of course, there are no answers to these questions. But if anyone has any strong feelings about this, I could use some encouragement! Thanks for allowing me to vent some of my concerns, Joy

jrnyc
02-11-2010, 12:52 AM
Hi Joy
i am also debating whether to have surgery or not (as we spoke of on the phone)..but my curves are much less than yours...i also do not have lung or heart problems as my thoracic is 40 degrees & doesnt bother me...except for pain..which is mostly handled by botox shots every 3 months or so...i had to cancel my appt for yesterday (wednesday) in NYC with pain doctor due to the snow..rescheduled for monday, feb 15...for my shots...
i will do surgery...if i do it..because of the pain..& the way it has restricted my life & ability to function at all!!
my lumbar problem causes incredible pain..all the time...some days worse than others, but ALL the time!

i think you have to consider how fast your problems are progressing...how much of your life they are interferring with...& how much worse you think they will get..dont rule out pain developing at some point, too!! i hope not, but it could happen.
have any of the doctors you've consulted talked about the rate of increase of your curves? will you be at 100 degrees in the next few years? do any predict if/when the pain will kick in from it getting worse? do they think that you will lose more lung function if the curves increase further?

i think it is awful to go back & forth with the decision...as it sounds like you are doing...& i KNOW i have been doing.....i am amazed at how fast some people are able to decide...i wish i could decide as quickly...but i cant...
i have an appointment to see Dr Lonner mid March to discuss surgery...

best of luck
jess

JenniferG
02-11-2010, 03:16 AM
I am so glad I made the decision easily. I knew what was coming, how quickly I was deteriorating. I didn't want to wait until I was in agony and I was heading in that direction rapidly.

Good luck to you both, Joy and Jess. I honestly can't see you regretting a decision for surgery, but you need to believe it for yourself, I guess.

debbei
02-11-2010, 04:14 AM
Just when I've made my decision to have surgery with Dr. Lonner in New York, I'm having second thoughts.

I have absolutely no pain and never have had any. I've raised two sons without incident. I was told that my breathing capacity is reduced by 50 percent. However, I can do 1/2 hour on the treadmill easily and hardly notice any problem in going through my day (I am a teacher.)

However, my thoracic curve of 90 degrees is not pretty and I'm concerned that it will progress, that I could develop problems and it will be too late to have the surgery.

But then again it could not.

My posture is excellent and people tell me that they hardly notice it. I don't know if I would do this if it was only for cosmetic reasons.

I've lived 57 years this way with no problems, so I guess I'm different that many of the people here.
How do I know that I wouldn't be able to live to a ripe old age this way? How do I know that I won't have chronic pain afterward? I've read here about people's relatives who've had long, full lives with severe scoliosis.

Of course, there are no answers to these questions. But if anyone has any strong feelings about this, I could use some encouragement! Thanks for allowing me to vent some of my concerns, Joy

Hi Joyful,
90 degrees is a pretty large curve. Do you know how fast it is progressing? For me, we knew that I progressed 30 degrees in 20 years and most likely it would continue to progress. Do you have any documented proof of progression? One thing you have to consider is that if you don't have the surgery, it might not be an option in another 10 or 20 years because of other health issues. You are young enough and healthy enough now that you could have a good recovery.

Believe me, even those of us with pain prior to surgery second guess our decisions to have this done. It's not like this is an 'emergency' and we have no choice. Just the thought of this surgery sounds CRAZY until you know more about it.

Good luck with your decision.

Jimbo
02-11-2010, 06:21 AM
Get it DONE!

You have lived with this for long enough.

Vali
02-11-2010, 06:33 AM
I required surgery 'within the next 12 months' my surgeon said. I had deteriorated 8 degrees in eight months and the pain was bad. He also suggested that it would be better for me now because i had not gone through menopause yet and there would always be te threat of other health issues such as athritis if i waited say within the next five years. I already had degenerative disc at multi levels. In all it took me about three weeks to make my decision and trust me it wasn't easy. Best wishes to you both.

Singer
02-11-2010, 06:57 AM
That's a huge curve. If there is evidence that your curve is progressing, I would not hesitate to have the surgery. A curve that large is crowding your vital organs, including your lungs and heart, and I would imagine it's only a matter of time before you'd begin to suffer pain and/or disability.

megz
02-11-2010, 09:09 AM
I wouldn't hesitate to have the surgery. I know its easier said than done, but believe me when it progresses you will begin to feel it. I was at 110 lumbar and it restricted my breathing. Once the doctor told me the options if I didn't have the operation I immediately made up my mind. Granted maybe it wouldn't of happen but I was healthy and young at the time and I wanted to get this done and out of the way so I know I can have a better quality life later on. After surgery I could notice my breathing was soo much better. I would love to get another pulmonary function test just to see if it indeed got better. I won't lie and say the surgery is a piece of cake. But the difference after surgery is incredible!! Good luck with your discion making.

CHRIS WBS
02-11-2010, 09:18 AM
Even if your curve does not progress any further, the fact that your breathing capacity is reduced by 50 percent is alarming. When I first began exploring surgery, I had the opportunity to attend a couple support group meetings where I met people who had surgery. There was a woman there in her 60s who had surgery to treat her 90 degree thoracic curve. She claimed she had no pain, but a surgeon convinced her that without surgery, her future looked bleak. This woman underwent two 15-hour surgeries at age 60 at Northwestern Hospital in Chicago. When I asked her why her surgeries were so long, she said her surgeon had a chest surgeon involved in an attempt to repair damaged lung tissue that over the years was caused by her untreated curve. I had two phone conversations with this woman prior to my own consultation with her surgeon. She did very well following her surgeries and was enjoying life doing a lot of traveling with her husband. Ironically, I was saddened to learn a few months ago that this woman succumbed to pneumonia and died last fall at age 68.

joyfull
02-11-2010, 09:33 AM
Thank you all so much for responding. I am going to schedule the date with Dr. Lonner today for the reasons many people mentioned - to prevent possible future problems when it will be too late to have the surgery.

(Chris, I can't help but wonder if that woman's pneumonia was related to the extensive surgery including work on the lungs. Who knows if she would have gotten it if she hadn't had the surgery?)

Now my job is to convince my two sons, ages 26 and 20, that I'm not crazy! Best wishes to all of you. Joy

kt2009
02-11-2010, 09:49 AM
I often felt that I was convincing others that this was a good idea. And though I would never do this for cosmetic effect, I wouldn't be honest if I didn't say that I was hoping to have some improvement in that area. I only had pain getting out of bed in the morning in my lower back. Both my orthopedist and the general surgeon who did the approach were shocked that I wasn't in more pain. Since I hadn't been monitoring my back, I didn't really know how quickly things had progressed. I could sort of tell through videos and pictures of me in bathing suits that things had gone wrong probably after my third pregnancy. It was a tough decision for me.

But I'm glad I did it when everything lined up...good insurance, my parents able to help, when I could get 50% correction. And, though it was a tough recovery, I'm sure I did better than I would have if I had been older.

I would think you would have to weigh heavily the fact that your breathing has been impacted. Good luck.

ADMoul
02-11-2010, 09:51 AM
Hi Joy,

I am sitting here with my lovely brace and some considerable post-op pain. In spite of all the difficulty of this journey--am only 9 days post-op, every morning, my husband keeps reminding me how straight I am. I haven't had the courage to do a "rear view" yet. For many years, I had no pain and would never dreamed of doing this. It is the hardest decision I have ever made (and that includes a divorce earlier in my life.) But as the months and years wore on, and this pain became increasingly limiting and interefered with my beloved choral singing and church work and enjoying my pets and cooking and all the things that enrich my life, I knew I had no choice. It is so damn hard to walk into a hospital perfectly "normal" and come out feeling the way I do now but I am clinging to all the encouragement from the post-ops on this forum that down the road, this will give me a better life. Even at this nitty-gritty pd. for me, I know it was the right thing.

CHRIS WBS
02-11-2010, 09:55 AM
(Chris, I can't help but wonder if that woman's pneumonia was related to the extensive surgery including work on the lungs. Who knows if she would have gotten it if she hadn't had the surgery?)

Or were her lungs irreparably damaged from her scoliosis? I read her obituary notice which stated that she succumbed to pneumonia brought on by severe scoliosis. I found it shocking though that she survived 30 hours of surgery with no complications only to die from pneumonia several years later. Then again, maybe the surgery gave her eight more years.

debbei
02-11-2010, 10:05 AM
Joy,

Good for you. I think you are making the right decision. Once you schedule your date, it gets a little easier to accept.

Many of us had to convince friends and family that this is the right thing. Not that you feel you need to justify yourself once you make such a hard decision.

Singer
02-11-2010, 10:52 AM
My family and friends were also skeptical about the surgery until I showed them my x-rays -- that usually convinced them!

Doodles
02-11-2010, 01:44 PM
Joyful--All of the above sounds so familiar--especially convincing friends and relatives. My mother especially! It was an incredibly hard decision. After my Sept. appt. my 88 degree thoracic jumped 10 degrees by March 31st when I had surgery. It was progressively increasing year after year and I was having a lot of deformity--still people said they didn't notice it! I did have pain but no lung problems. I would do it again. Janet

jrnyc
02-11-2010, 04:56 PM
Hi Megz
i suspect it was your thoracic curve that gave you the lung problems & not the lumbar...but i am glad for you that you made the decision & are having a good outcome!
best of luck in continued healing

jess

titaniumed
02-11-2010, 07:01 PM
Joy

Things will be ok, try not to worry too much. Part of my decision was due to having 2 70 degree curves at age 49. I knew that eventually, growing older with large curves would be a problem.

The amount of people being diagnosed with scoliosis at age 60 is high, about 60%. The one thing we know for certain is the fact that age plays a big part.

I just cant believe that you and others with very large curves, and 90 is large, have no pain. People can experience major pain with curves in the 30 degree range. Maybe your bone spur growth is minimal, or you just have extra room for various nerves, and minimal disc problems. If you made it all these years without pain, you are very very lucky.

In order to convince people, they will need to be educated about scoliosis.
If you have any problems with your class, let us know.

Do you have any x-rays to show? They help.
Ed

hdugger
02-11-2010, 08:38 PM
Hi Ed,

I suspect the high thoracic curves aren't as painful - my son has minimal pain with his 50 to 60 degree curve. His first orthopedic surgeon (not a scoliosis specialist) said that it was so high he could get to 90 degrees before it would start to affect his lungs.

Not that we're planning on that.

LindaRacine
02-11-2010, 09:25 PM
Hi Joy...

It might surprise some that I'm not as enthusiastic about choosing the surgery option. First, I'd be sure that the curve is, indeed, increasing. Have you had a pulmonary function test? If your curve is progressing, and if your PFTs have been measured at 50%, then I agree that surgery is probably the only option if you want to continue functioning like you are.

The one thing that seems pretty universal in terms of adult scoliosis surgery is that the people who have the most amount of pain seem to have the best outcomes. I think that's because they have the most to gain.

I can only imagine how difficult the decision is when you don't have pain. It's hard to imagine signing up for a surgery that you know is going to be relatively painful, at least in the short-term, when the benefits aren't so obvious. :) I can almost guarantee that you'll think you made a mistake for the first month or so post op.

Good luck with whatever you decide.

Regards,
Linda

joyfull
02-11-2010, 11:19 PM
Thank you all for your observations.

Linda, Dr. Lonner's PA had me breathe into a hand held device without using my lips. That is how she came up with the 50 percent decrease in lung capacity. I can feel that the curve has increased since I went to Clear in 2007. Curiously, since the curve has moved more to the side and over, people say that it is actually less noticeable than when it was smaller and more towards the center of my back. In other words, my back is more flat now.

You seem to really understand now I feel; walking into the hospital with no pain to undergo an ordeal that hopefully won't lead to chronic pain to prevent hypothetical progression. Anne, you seem to have some of the same feelings, but you did have some pain to justify your decision.

I'm just putting one foot in front of the other and hoping that I'm doing the right thing. Now if Governor Christie doesn't cut my state employee health benefits, I'll be all set to go in June. Best to all, Joy

LynetteG
02-11-2010, 11:28 PM
Joyfull - that's exactly how I feel right now. I have little pain right now even though I have a large 85 degree lumbar curve and 45 thoracic. However I know that my curves are progressing rapidly and I want to have a happy healthy future with my sons. It has made the whole process very difficult however because of the fact that my pain is minimal right now, and will be far worse right after the surgery, but ultimately long term, I KNOW I will be better off. I don't want to have a 100 degree curve or worse when I'm just a little bit older and then experiencing dire pain with no chance of correction. It will definitely feel weird for me to enter the hospital feeling fairly healthy, and leave feeling way worse - but as they say - short term pain for long term gain. What's making it especially hard also for me are my two sweet little boys, who are crying a lot already saying they don't want me to be away from them for seven days in hospital - I'm just hoping and praying that there will be no complications and that I will get home after seven days or before and not longer! Anyway, I won't think about that, I'll focus on being positive and healing rapidly :). Anyway - I definitely understand your predicament, but as the others say, if your curve is increasing fairly rapidly, and with you having such a large curve, I would encourage you to get the surgery while you're younger, and while they have better chance of correcting it for you. Good luck with your decision!

titaniumed
02-12-2010, 12:27 AM
Hi Hd

Thoracic curves can be painful. If it wasnít for my Chiropractor who would adjust my thoracic vertebrae supine, I donít know what I would have done. Ive been to quite a few Chiros, and not many know how to do these moves which is done with their fist under your back. That worked for pain relief for 20 years. It also helps if your Chiro has scoliosis, like mine. He studied scoliosis for decades.
Dr Martin Rutherford.

90 degrees is a huge curve. I had breathing issues with a T70. My curves also were 50s back when I was 19. My pain started when I was 27 back in 1986.

Was this Doctor saying that your son doesnít have to worry about things till he hits 90 degrees?

I wonder if Bill Clintons cardiologist ever suggested an angioplasty? Hmmm
You know he is in the hospital right now.
Ed

debbei
02-12-2010, 06:47 AM
My thoracic curve gave me pain from time to time. For years, I'd get this pain and not know what it was. I think a little part of me knew that it was my scoli, but it didn't happen all that frequently. When it did, it would last a few weeks. I thought I just 'did something' to make my back hurt. I haven't had THAT pain since surgery.

I wouldn't feel right, knowing that I had a large curve and waiting till it got to 90 degrees. I'd think the possibility for correction wouldn't be as good.

naptown78
02-12-2010, 07:54 PM
Joy,
I agree with Linda. Do you have documented progression of your curve? And of your PFT? There are more than one type of PFT's to be done. Have you gotten a second opinion and a third? I didn't have great success with my surgery so I am a little conservative with recommending surgery without pain and/or disability. There is a risk of not getting the results you want.

jrnyc
02-12-2010, 08:09 PM
Hey Joy
i would be really worried about the lung capacity decrease! cause...if that is progressing, i KNOW what it would be like to try to breathe with less capacity...i was in the hosptial with septesemia (splg?) & i had fluid in my lungs! i had 2 hours of oxygen left in my blood, according to the doctor who found the problem.... at midnite!! they rushed me into ICU, put me on pressurized oxygen...very uncomfortable...but after i took it off my face 3 times, they said one more time & they'd shove a respirator down my throat! i left the pressurized oxygen on my face after that! 10 days later, i went home...but they didnt think i would make it, for a while!

soooo...if there is a chance you will not be able to breathe...i'd do it...i can understand, though, how hard it is to decide without pain! i am in daily pain, & still hesitating! my thoracic pain is being treated with botox shots...but i dont know how long that will work...last time measured, in oct 2009, it was 40 thoracic & 61 lumbar...the lumbar causes pain all the time...the thoracic not as bad...BUT...if my thoracic increases any, i may be looking at full fusion, like titaniumEd...instead of L4-sacrum & T11-S1...

best of luck...you will be in great hands w/Dr Lonner...that is who i expect to go to for surgery...

jess

joyfull
02-12-2010, 11:22 PM
Linda, Who did your surgery? Why were you disappointed? At 21, I saw a Dr. Levine who wanted to do Harrington rod surgery because my curve was maybe 47 degrees. I'm glad I waited. I can feel shifts in my torso, more concave, more and different rib hump. Right now, I'm not AWARE of real breathing problems. OK, so I can't run a marathon, and I get winded a little before my friends if we do a hilly walk, but it's really no big deal. In 2007 when I went to Clear, they measured my curve as 83. It is now 85 according to Dr. Lonner, 90 according to Dr. Boachie, so it is definitely progressing. Whether or not I will have serious problems no one can actually predict, but all the surgeons whom I've seen have recommended surgery and I don't think it's for mercenary reasons.

Jess, what you went through sounds horrific! My difficulties, if they can be considered that, are mild in comparison. I believe that you said in a previous post that you are apprehensive about what it will be like to live with a fusion. I have the same concerns, but so many people live such active lives that my fears have been somewhat alleviated.

David, the insurance issues are very real. Governor Christie has threatened to cut health benefits for part time teachers, (I work 3 1/2 to 4 days a week) and he is starting to make extreme cuts now. I must admit the the cosmetic aspect plays a part in my decision. But I'm really afraid that if I develop heart or lung difficulties later on, the surgery will be much more risky or, even worse, impossible. People do die from complications from scoliosis. The people on this forum seem, for the most part, satisfied with their decisions and very active and vital. I've seen Dr. Boachie, Dr. Lonner, had a phone consult with Dr. Anand. I'm probably going to cancel the March 17th appointment to see Dr. Lenke because the logistics of having surgery there present too much difficulty. I saw Dr. Neuwirth 15 years ago, another doctor in Cleveland before him, so I'm confident that I'm making an informed decision. Having a top notch surgeon seems to be key. All the best, Joy

LindaRacine
02-13-2010, 01:23 AM
Hi...

I actually didn't say I was dissatisfied with surgery. I was pretty impaired in terms of function prior to surgery, as I couldn't stand for more than 5 or 10 minutes. I had pain every day, so I felt the risk was balanced by the potential reward. After surgery, I was not very happy in the short-term. I traded lower back pain for upper back pain. Fortunately, the upper back pain didn't keep me from functioning, and did eventually get much better. I still have upper back pain, although not on a regular basis. If I had to do it again, I probably would, although I'd want to know that I might be setting myself up for new pain. (For some reason, I've always found it easier to tolerate the pain I'm used to than to tolerate pain that's unusual.)

The reason I posted what I did is that I feel strongly that one should go into surgery with truly informed consent. Knowing that you may have some long-term pain post op will help you accept the outcome if something like that happens. (Hopefully it won't!) As you've already seen, there are a lot of people who are very gung ho about surgery. But, if you look around, you'll also find people who feel they made the wrong decision.

In the end, I think the advanced degree of your curve would force you into surgery at some point anyway. Assuming that your curve will increase the average for large curves, of around 1-2 degrees a year, it wouldn't take very long before you had a curve that really had a negative impact on your life. And, waiting 5-10 years might be detrimental on several fronts. So, if I were in your shoes, I'd almost certainly opt for surgery.

Regards,
Linda

joyfull
02-14-2010, 03:19 PM
Thanks, Linda, for the thoughtful response. I need to speak to Dr. Lonner about the risk of chronic pain afterward. I remember Dr. Boachie saying that usually if you don't have pain before, you don't have pain afterward.

Dr. Lonner said that I don't have to go all the way to Missouri to have the vertebral resection procedure with Dr. Lenke, that he would do it if I wanted it but he feels it's too risky. I was thinking that since Dr. Lenke does this procedure routinely, then it's probably less risky when he does it, but I didn't say that! Then Dr. Lonner said that he can do a partial resection after he sees how the surgery progresses.

I'm most likely going to have the surgery here in New York with Dr. Lonner, since the logistics of flying out to Missouri, staying in a hotel, flying back and being so far away from the surgeon seem daunting and expensive! If I give up the few degrees more correction that I could have gotten with Dr. Lenke, so be it. I think I'm going to cancel my appointment for the March 17th consult with Dr. Lenke.


Dr. Lonner said he would do a side minimally invasive release and then a posterior fusion. I would be face down the whole time. I suppose he is trying to get the same results as Dr. Boachie would with a full anterior/posterior procedure. He said the surgery would take 8 to 10 hours. He said he could get approximately 50% correction. Does this sound reasonable to you?

Thanks, Joy

LindaRacine
02-14-2010, 03:37 PM
Hi Joy...

I think surgeons usually estimate the curve reduction very conservatively, so I suspect you'll get at least 50% correction.

I personally wouldn't travel any distance for spine surgery if I felt there was someone close by who was qualified. So, I think you're probably making the right decision.

Regards,
Linda

Cilla
02-14-2010, 04:39 PM
I have had six surgeries so far and wish that I would have never had any of them. I had sciatic pain in both legs before surgery but with rest it would go away and I could do things. Now after all the operations I can't do anything and I'm in pain all the time. I spend most of my time in bed, I feel I traded pain in my legs for pain every where and I didn't even get rid of the curves! I had a full fusion as I had 58 degree curve on top and 48 on bottom with 45 degree takeoff from the sacrum with a 45 degree rotation. I think I was twisted every way possible. Now I still have the very large rib hump and my pelvis and ribs are deformed and are very noticeable. The next surgery will attempt to put an arch back in my lower back as I have "flat back" from the fusion going from T1 - sacrum. It was a really hard decision and just wish I could go back in time and not do it. Hind sight is always 20/20! Best of luck to you!

LindaRacine
02-14-2010, 04:52 PM
Hi Cilla...

Have you ever been told that you have reflex sympathetic dystrophy (aka complex regional pain syndrome)? It can be brought on by trauma or surgery. Since you mention that you have pain everywhere, I thought it might be something like that.

Regards,
Linda

Cilla
02-14-2010, 05:08 PM
No I haven't been told that. My pain is in my whole back with spots that have more pain than the rest and pain in my hips and knees. That is due to greater stress on the joints..

joyfull
02-14-2010, 10:06 PM
Cilla, I'm so sorry to hear about your experiences. Who did your surgeries? It doesn't even sound as if your curves were that large by the standards of those who post here. Mine is 85 or 90 thoracic and a compensatory lumbar curve (I can't remember what it is) with a pretty prominent rib hump. I hope the next surgery gives you some relief. Thank you for posting your experience. Joy

Karen Ocker
02-15-2010, 01:58 PM
Persons without scoliosis die from pneumonia all the time. Some deaths are from drug resistant bacteria. There is a vaccine called "Pneumovax" which protects against many type of pneumonia. I decided on this vaccine once I realized how reduced my lung capacity was before the surgery.

I once had to sedate a lady for a colonoscopy in her own bed because she was on a ventilator because of scoliosis. She was only 74 and the scoliosis was slowly killing her.

The problem with reduced lung capacity is that lung capacity normally decreases with age in persons without scoliosis. Persons with severe scoliosis are at a disadvantage with respiratory illness because they have very little "reserve" capacity.

I lost lung tissue from an 80 degree curve and it doesn't come back.

txmarinemom
02-15-2010, 03:11 PM
I actually didn't say I was dissatisfied with surgery. I was pretty impaired in terms of function prior to surgery, as I couldn't stand for more than 5 or 10 minutes. I had pain every day, so I felt the risk was balanced by the potential reward. After surgery, I was not very happy in the short-term.

Linda,

Remind me ... when was your last surgery? I'm sure I've read it before, but it escapes me.

Regards,
Pam

jrnyc
02-16-2010, 12:15 AM
Cilla
i am so sorry to hear of the extreme pain that you live with every day...i hope that the next surgery will give you some relief...i hope it is the last surgery you will need!

please post the date of your next surgery...so folks on forum can keep you in their thoughts & prayers...

jess

joyfull
02-16-2010, 10:31 PM
Hi all. I seem to have forgotten how to start a new thread.

For those of us older people, I'm wondering what my back will feel like after surgery. I was told that my 90 degree curve is pretty inflexible. Does this mean that it won't seem much different when it will be fused? (Apparently, I'm going to be fused from T1 to L4.) Are you aware of an "unnatural" feeling? Can you feel the hardware or are you unaware of it? It's odd; I feel as though even if my back is curved and unattractive, it's still been a part of me for 57 years and I have some irrational regret about drastically altering it, almost a grief. Can anyone relate to this? Can people tell that you are fused by the way that you move? Thanks for responding, Joy

JenniferG
02-17-2010, 02:07 AM
Joy, for about 6-8 weeks, I felt like I was wearing a backpack. But that feeling disappeared.

When out walking fast, I am aware I have a wonky walk, but if I concentrate and hold down my right shoulder, I can minimise it so that I am sure nobody would notice.

I do have a few bumps that are visible at the top of my rods and if I run my hand down my scar, I can feel bumps beneath the skin.

But do I miss my old shape/body? Hell, no! I'm thrilled with my still-not-quite-symetrical shape. What I've got now IS me and feels natural.

Doodles
02-17-2010, 01:43 PM
Joyfull--
I don't think anyone could tell I was fused unless they saw me try to pick up a small item on the floor or trim my toenails--and that ain't a going to happen! I get in some weird positions for that. I finally decided recently I wasn't feeling the hardware when I lie down as much as the right side rib hump that is better but remains. My pt says that's of course attached to ribs that just got moved to a new spot and dragged along and has to get used to this new spot. Something like that. I can feel from the outside the top of the rods. Believe me, I had no grief about getting rid of the old body! Janet

Cilla
02-19-2010, 11:11 PM
Hi All,
I met with my new surgeon yesterday, Dr. Tribus from UW Spine Center in Madison, WI. He is a specialist in adult spinal deformities and spinal reconstructive surgery. I was referred to him from my second surgeon as he was not comfortable in doing the procedure that I need to have done. The first surgeries I had where staged fusion of my spine from T1 - sacrum. Three and four were removal of the ends of the rods that went into the pelvis. Five was removal of the lower half of the rods and re-fusion of L4 & L5. Six was the removal of the rest of the rods that were first put in as they never "healed in" and were migrating. I was told that the thoracic spine was fused and even if it wasn't it would be fine as it doesn't really move anyway. At my appointment, Dr. Tribus went over my CT scan and x-rays and found that I have a non-fusion between L1 & L2, I still have a significant rotation and most of the fusions of the thoracic spine never fully healed. Because of this the kyphosis returned after the last of the Harrington rods were removed. April 7th Dr. Tribus will be doing a asymmetrical osteotomie to correct my flat back and reduce the rotation, a re-fusion between L1& L2 and stabilization of the thoracic spine. I am so happy to know that there is a reason for all of the pain I am in and that Iím not crazy!!! It seems like docs have a way of planting little seeds of doubt in your head when they donít know the answer. So now I feel validated and I have HOPE, finally! I'm scared because now I know just how much it's going to hurt, sometimes ignorance IS bliss, but still can't wait to get this over with.

joyfull
02-19-2010, 11:28 PM
Cilla, I'm so glad to hear that you are hopeful that you have found a surgeon knowledgeable enough to understand and deal with your problem. I suppose the newer instrumentation will make a big difference. My thoughts will be with you on April 7th. All the best, Joy

jrnyc
02-20-2010, 03:32 AM
hey Cilla
it is true that there are doctors who place the blame on the patient when they dont know how to fix the problem....
so glad that you found a good surgeon who knows what to do & will help alleviate your pain!

best of luck
jess

debbei
02-20-2010, 08:41 AM
Hi All,
I met with my new surgeon yesterday, Dr. Tribus from UW Spine Center in Madison, WI. He is a specialist in adult spinal deformities and spinal reconstructive surgery. I was referred to him from my second surgeon as he was not comfortable in doing the procedure that I need to have done. The first surgeries I had where staged fusion of my spine from T1 - sacrum. Three and four were removal of the ends of the rods that went into the pelvis. Five was removal of the lower half of the rods and re-fusion of L4 & L5. Six was the removal of the rest of the rods that were first put in as they never "healed in" and were migrating. I was told that the thoracic spine was fused and even if it wasn't it would be fine as it doesn't really move anyway. At my appointment, Dr. Tribus went over my CT scan and x-rays and found that I have a non-fusion between L1 & L2, I still have a significant rotation and most of the fusions of the thoracic spine never fully healed. Because of this the kyphosis returned after the last of the Harrington rods were removed. April 7th Dr. Tribus will be doing a asymmetrical osteotomie to correct my flat back and reduce the rotation, a re-fusion between L1& L2 and stabilization of the thoracic spine. I am so happy to know that there is a reason for all of the pain I am in and that Iím not crazy!!! It seems like docs have a way of planting little seeds of doubt in your head when they donít know the answer. So now I feel validated and I have HOPE, finally! I'm scared because now I know just how much it's going to hurt, sometimes ignorance IS bliss, but still can't wait to get this over with.

Hi Cilla,

I'm glad you finally got some answers. I know that someone else on the forum here had your new surgeon, I remember the name (but not the patient.) Do a search on his name and you will probably find some posts.

Thank goodness that the surgeon who recommended you was smart enough to know that your case was over his head.

Good luck,

Ryy
02-21-2010, 02:18 AM
Hard decision joyfull since you have no pain. With the breathing though and the chance it could progress, i would go for the surgery. I'm 24 and 2 years ago, pain increased much and is constant. Surgery for me in the near future.

I wonder what makes scoli and kypho progress all of a sudden, anyone know? i don't know why my pain level has increased and became constant all of a sudden about 2 years ago. I don't know if my kypho is progressing or not, but sure seems like it.

Cilla, good luck with your upcoming surgery

jrnyc
02-21-2010, 03:54 AM
Ryy
did you do anything? any activity? my pain got really bad after i herniated discs by lifting a little kindergarten chair at work!

i really think as one gets older, the wear & tear on the back increases the odds of pain occurring...dont know why it happens with young people, though....?

jess