Hi, my name is Roberta and I am brand new to this forum. I am incredibly confused and need help from those of you who have experience with severe scoliosis. My lumbar curve has gone from about 56 degrees 10 years ago to 78 degrees right now. The reason I am having a hard time deciding if I should have surgery or not, is that I have never been and still am not in bad pain. I have discomfort often, but over the counter meds alleviate it for a while. I know the surgery is huge with a lot of pain afterward. Therefore, I am wondering if you think I should wait until I have serious pain before having surgery. I would appreciate any help/advice from anyone who had been or is in the same situation as me.
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Roberta,
I am your age and also have discomfort at times, but nothing I can't live with. I am active playing golf almost daily, tap dancing, bike riding, taking classes at the Y, etc. My curve is also increasing. I have elected to have surgery based on Dr. Lenke's recommendation. He told me I could wait a year or two, but that he didn't want me to wait several years longer since the recovery is tougher and the results sometimes are not as good if you are older. I am hoping for a better cosmetic looks, too, but don't know how much he'll be able to reduce the rib hump. It's a difficult decision when you aren't in a lot of pain knowing that there can be complications and there will definitely be severe pain following surgery. I worry about it every day, but trust that Dr. Lenke wouldn't recommend it if he didn't feel it necessary.Karen
Surgery-Jan. 5, 2011-Dr. Lenke
Fusion T-4-sacrum-2 cages/5 osteotomies
70 degree thoracolumbar corrected to 25
Rib Hump-GONE!
Age-60 at the time of surgery
Now 66
Avid Golfer & Tap Dancer
Retired Kdgn. Teacher
See photobucket link for:
Video of my 1st Day of Golf Post-Op-3/02/12-Bradenton, FL
Before and After Picture of back 1/7/11
tap dancing picture at 10 mos. post op 11/11/11-I'm the one on the right.
http://s1119.photobucket.com/albums/k630/pottoff2/
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You and me both Roberta! Except I'm 64 and substitute for your measurements:
T- 30
L- 52-60 degrees depending...
ON... whether I go by the Xray done at the Hospital for Special Surgery in March (three NYC surgeons arrived at reading of L58-60 based on that Xray) or Johns Hopkins where I just got results of June 30th Xrays = L51- 54 deg. depending on whether it's the radiologist or the surgeon who ordered them.
I'm VERY unsure how much the Cobb has changed over the last ten years as I didn't even know to have scoliosis studies done until 2003 and the local hospital claims it's been stable the whole time @ L = 42-44 (!?! ). However, in that time, I've lost four inches SOMEHOW and developed marked lumbar kyphosis (supposed to be 25 0r 35 deg. or --?).
It's their readings and reports of "same old, same old" that aided and abetted my denial all that time, despite my pain and disability. Finally, I decided I HAD to get opinions from spinal surgeons which I started collecting in March, for the first time. I figured it was nuts to keep reassuring myself I was holding steady no matter what the radiologist said. So I ignored their numbers - finally. "They" all say that what counts is ones level of pain and impairment, anyhow. Well, mine is pretty high. And what about that loss of height, huh?
All told, I'd still wait (and try pain relief techniques I haven't explored adequately - e.g., facet joint injections, etc.) - except that I have massive deadlines approaching: 1) Feb (65th birthday) I lose my two "good" insurance plans. (This means after then. the surgery will cost me ~$60-120K more than now!) and 2) I doubt my SIL will be available to help me later. (My younger son is taking this year off college too - and could also help. Now, but not later).
All this pressure is making me even doubt I'm in pain - at least, DECISIVELY. Reading about surgical complications (including repeat surgery - I was told to expect it!) and post surgical pain, is making it impossible to balance factors on my imaginary mental scales. So I too am incredibly confused - AND anxious, given the time-line.Last edited by Back-out; 07-28-2010, 12:32 AM.Not all diagnosed (still having tests and consults) but so far:
Ehler-Danlos (hyper-mobility) syndrome, 69 - somehow,
main curve L Cobb 60, compensating T curve ~ 30
Flat back, marked lumbar kyphosis (grade?) Spondilolisthesis - everyone gives this a different grade too. Cervical stenosis op'd 3-07, minimally invasive
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That said, about YOU! Factors I see, are your health and your actual rate of progression.
Re: health - unless you are a VERY youthful 60 (in terms of your so-called "Real Age" - meaning your biological or medical age), I'd worry pretty seriously about what it would mean to you to delay surgery until an unspecified time in the future. Plenty of folks here in our demographic will tell you of their thoughts on waiting - and of stories all have heard of patients who waited and then weren't well enough to qualify for surgery.
Re your rate of progression: That's kind of indeterminate. I hope you have better and more consistent documentation of your measurements than I do, because (thinking basic Mechanics in a Physics course) I think your rate of acceleration matters more than a hypothetical average. I.e. if the deterioration is speeding up (having reached a "tipping point").
Two degrees/year is (if holding steady), I believe, the statistical average for adult scoliosis. At least, someone told me so recently. .
You haven't mentioned the kind of practical considerations I'm contending with, so I assume (unless you say otherwise), that they aren't there.
I'll be very interested in hearing what advice you get, and meanwhile, I commiserate completely!
AmandaNot all diagnosed (still having tests and consults) but so far:
Ehler-Danlos (hyper-mobility) syndrome, 69 - somehow,
main curve L Cobb 60, compensating T curve ~ 30
Flat back, marked lumbar kyphosis (grade?) Spondilolisthesis - everyone gives this a different grade too. Cervical stenosis op'd 3-07, minimally invasive
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Hi Roberta...
Most of the best surgeons I know would probably recommend that you not have surgery, at least yet. While progression is a cause to consider surgery, it's not absolute. I may sound like a broken record to others, but we rarely see patients at UCSF, that have what the patient considers to be a bad outcome. Those who do say they're unhappy with their outcomes are very often patients who had no preop pain.
There's certainly a decent possibility that you'll start eventually having pain that can't be controlled by non-narcotic medication. When the time is right for surgery, I think you'll know.
Regards,
LindaNever argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
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Surgery 2/10/93 A/P fusion T4-L3
Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation
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Hi Linda,
I'm a little confused by this statement. I know people who were not in a great deal of pain but were happy they got the surgery "over with" as the curve was progressing and they knew what the future held. If you're saying she will eventually have pain that cannot be controlled with meds and we know a curve that's already progressed will continue to progress, AND at the age of 60 there is limited time to get this done, I'm not understanding why a surgeon would recommend holding off.
I've asked this before but if we know surgery is inevitable what are we waiting for??
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I was upset last night after I read Linda's recommendation to wait until the pain increases, since I have decided to not wait, based on my age (same as Roberta's) and the fact that my curve has progressed. It has been my understanding that age and your physical condition is a big factor in the success of the surgery and the recovery time. I know I am losing some flexibility, whether naturally from aging or from my curve increasing. I would think that a surgeon would have better results with a more flexible spine and vertebrae that have not degenerated. I hate the thought of surgery, but hope it's giving me the best chance for the next 30-40 years of not being in pain and disabled.Karen
Surgery-Jan. 5, 2011-Dr. Lenke
Fusion T-4-sacrum-2 cages/5 osteotomies
70 degree thoracolumbar corrected to 25
Rib Hump-GONE!
Age-60 at the time of surgery
Now 66
Avid Golfer & Tap Dancer
Retired Kdgn. Teacher
See photobucket link for:
Video of my 1st Day of Golf Post-Op-3/02/12-Bradenton, FL
Before and After Picture of back 1/7/11
tap dancing picture at 10 mos. post op 11/11/11-I'm the one on the right.
http://s1119.photobucket.com/albums/k630/pottoff2/
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I agree with Karen and JamieAnn. I wish that I had been properly diagnosed at an earlier age than I was, since osteopenia takes its toll on the bone making it much more difficult getting a correction. You also run the risk of permanent nerve damage the longer you put off surgery.
Karen, what makes you think you will have to pay so much for surgery after you reach 65? Medicare with a supplemental policy will pay much of your expense. You just have to pick a policy that your Doctor and hospital will accept.
SallyDiagnosed with severe lumbar scoliosis at age 65.
Posterior Fusion L2-S1 on 12/4/2007. age 67
Anterior Fusion L3-L4,L4-L5,L5-S1 on 12/19/2007
Additional bone removed to decompress right side of L3-L4 & L4-L5 on 4/19/2010
New England Baptist Hospital, Boston, MA
Dr. Frank F. Rands735.photobucket.com/albums/ww360/butterflyfive/
"In God We Trust" Happy moments, praise God. Difficult moments, seek God. Quiet moments, worship God. Painful moments, trust God. Every moment, thank God.
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I had surgery at age 59. I had a big progressive curve but was fully functional. I consulted several excellent surgeons, all of whom recommended surgery. I am not, as Linda suggests, one of those unhappy with my outcome. Several posters here dispute her statement by sharing opinions of their surgeons (including Dr. Boachie) that those who are the most satisfied with their results are in fact those individuals who had minimal pain going into this surgery.
At age 60, one thing is for certain… you are not going to get any healthier with each passing year; and this surgery is one huge physical undertaking. I wish I had this surgery at least 10 years sooner as I would have gotten a much better cosmetic outcome.
I would advise you to get at least two consults with surgeons who are well experienced in adult spinal deformity.
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I also agree with Karen and Jamie Ann. I was told by 2 spine specialists that the longer I wait, the more difficult my recovery will be, the worse my deformity will be and therefore the less correction they will be able to achieve. They both said to NOT wait until I am in worse pain because it may not improve a whole lot after. I have read of many on this forum who did not have much pain at all before surgery and seemed to have had an excellent recovery. I recently spoke with a woman, age 60, who had this surgery and wished she had it done 10 years ago because she felt her recovery would have been easier.
No one wants to have this surgery, it is serious. But if you have done the research AND your surgeon suggests you have it done sooner rather than later, then you should listen to him as he will know what's best for your situation.Last edited by lray; 07-27-2010, 11:13 AM.Laurie
Age 57
Posterior fusion w/thoracoplasty T2-L3 Oct 1, 2010
Thoracic curve corrected from 61* to 16*
Lumbar curve, unknown measurement
Disfiguring back hump GONE!!
Dr Munish Gupta
UC Davis Medical Center, Sacramento, CA
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Originally posted by JamieAnn View PostHi Linda,
I'm a little confused by this statement. I know people who were not in a great deal of pain but were happy they got the surgery "over with" as the curve was progressing and they knew what the future held.
Originally posted by JamieAnn View PostIf you're saying she will eventually have pain that cannot be controlled with meds
My point in posting this information is that I think it's really important for people who are considering surgery to really think about all of these issues. I am not recommending against surgery (that would not be my place). I'm just simply making an observation.
Regards,
LindaNever argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
---------------------------------------------------------------------------------------------------------------------------------------------------
Surgery 2/10/93 A/P fusion T4-L3
Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation
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Sally,
It was Amanda (Backout) not me who was concerned about the price. Fortunately, Dr. Lenke's office said my out of pocket cost will be $250.00.
I am very happy about that!Karen
Surgery-Jan. 5, 2011-Dr. Lenke
Fusion T-4-sacrum-2 cages/5 osteotomies
70 degree thoracolumbar corrected to 25
Rib Hump-GONE!
Age-60 at the time of surgery
Now 66
Avid Golfer & Tap Dancer
Retired Kdgn. Teacher
See photobucket link for:
Video of my 1st Day of Golf Post-Op-3/02/12-Bradenton, FL
Before and After Picture of back 1/7/11
tap dancing picture at 10 mos. post op 11/11/11-I'm the one on the right.
http://s1119.photobucket.com/albums/k630/pottoff2/
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my situation - 3rd surgery at 64???
Originally posted by RSH View PostHi, my name is Roberta and I am brand new to this forum. I am incredibly confused and need help from those of you who have experience with severe scoliosis. My lumbar curve has gone from about 56 degrees 10 years ago to 78 degrees right now. The reason I am having a hard time deciding if I should have surgery or not, is that I have never been and still am not in bad pain. I have discomfort often, but over the counter meds alleviate it for a while. I know the surgery is huge with a lot of pain afterward. Therefore, I am wondering if you think I should wait until I have serious pain before having surgery. I would appreciate any help/advice from anyone who had been or is in the same situation as me.
So I diliberated over a year about the surgery and after the last visit, the doc felt that while I have some back issues, my life is active and pain free. Surgery will increase the stiffness, it will be a big intrusion into my life and I am afraid - hospitals, mistakes, all the risks associated with the surgery etc. We agreed to wait until things become more uncomfortable. I hope that it will be a reasonable/sensible decision.
Susan[FONT="Comic Sans MS"]
Spinal fusion 1961
HR 1981 T3-L4
Thoracic curve 75Cobb; post 40
Present: Thoracic 60Cobb Lumber? [FONT]
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where the diff in cost comes from -nb. "Hospital Options" AARP plan
It's not only the cost of surgery which I figure will put me that much more out of pocket if I wait til I'm on Medicare (and only Medicare). It's also that I will not have the heavy reimbursements of my current indemnity plan (it should actually pay out !$40K in all).
Also, according to Evelyn (Confusedmom) Medicare doesn't pay for BMP which I estimate at costing $60K self pay - provided I opt for it. Still kind of confused about its desirability based on the research I posted which I intend to check out (to the extent I'm able).
Other differences in cost come from Medicare's out of pocket compared to my primary BCBS PPO which I have (for now). I've hit stop loss and it's a pretty good plan.
I know it's a shocking difference. Again, much of that comes from my terrific AARP indemnity plan. It pays large flat amounts for surgical procedures as well as $700/day hospitalization (and other expenses).
Nothing you'd want to "cash in" by having unnecessary surgery! However, if one is going to have it anyway, it would be a shame to lose these benefits because of delaying surgery a year or so. This amount will go a long way toward covering travel and lodging expenses for me and helper - That's my greatest out of pocket cost from my rural location. Also, it will give me a lot of extra savings to cover help at home during recovery and later - plus adapting my house. Padding for (god forbid) "complications" , too!
"In long", the figure I gave represents the difference in what will be in my bank account, if the surgery comes after my 65th birthday - best estimate.
FWIW I highly recommend the plan for pre-seniors ("Hospital Options" - available for those 50 - 65 yrs). It's probably NOT a possibility for most posting here, not for scoliosis surgery anyhow, as it would be a pre-existing condition. For me, though, it will pay because I subscribed to the plan long before surgery was remotely considered - not only before my scoliosis was bothering me, but before it was even formally diagnosed.
It would also have paid a pretty penny for knee joint replacement if I'd managed to fit that in beforehand - one of my considerations. Every time I have a series of knee joint injections (every six months) it pays me $4K. Etcetera!...It's been a great investment - much more than I could ever have known when I applied.Last edited by Back-out; 07-27-2010, 12:42 PM.Not all diagnosed (still having tests and consults) but so far:
Ehler-Danlos (hyper-mobility) syndrome, 69 - somehow,
main curve L Cobb 60, compensating T curve ~ 30
Flat back, marked lumbar kyphosis (grade?) Spondilolisthesis - everyone gives this a different grade too. Cervical stenosis op'd 3-07, minimally invasive
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See a Specialist or MANY to see what they recommend. I saw 7 Dr's over 20 years before deciding. I am only 36 but I wish I had it 10-20 years ago also, when it was first recommended (hindsight is 20/20). Recovery is HARD and mine has gone fairly well. You will need a lot of support as well which should be a deciding factor. Family and friends will be crucial! Email me if you have any more questions. I messaged it to you as I know you live close by.
Janet36 year young cardiac RN
old curve C 29, T 70, L 50
new curve C 7, T 23, L 20
Surgery June 11, UCH, Dr. Cronen T2-L5, posterior
Revision December 20 L5-S1 with pelvic fixation
and Osteotomy to L3 at Tampa General Hospital
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