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T10-S1 fusion

From: ftpanelli - on 12/21/2010 6:07pm

Has anyone had a fusion of this size that will tell me about their experience?

I have Thoraco-Lumbar Scoliosis with T4-T10 curve measuring 30 degrees and T10-L4 measuring 45 degrees. There is disc desiccation, loss of disc heights, retrolisthesis, disc bulging, annular bulging, broad based annular bulging hernation, arthritis,etc.

I have put off surgery as long as possible, and have slowly given up many of them.
many activities in my life along the way, while dealing with increasing pain and limitations.
I am still fairly active and on the worst day it takes me 25 mins to get out of bed and on the best day I can do a light gym workout. Oh I am 47 yo, healthy other than this, and fairly strong.

As i put off the surgery and deterioration continues the size of the surgery required grows larger.
Just a few months ago, I found out that I had passed the window for a lumbar fusion as the deterioration my spine moved upward. If I was to opt for it now (in the hopes of staving off a larger surgery later) I need 10-S1 (at least). As it deteriorates further (probably
within the year I will need T3-S1....

What to do? Keep plugging along until the pain is just too great and do the entire spine then, or make a decision to do a 'smaller' surgery now in hopes of preserving some part of my upper spine fusion free?

Do you find this discussion helpful?

35 Responses

on 12/21/2010 6:23pm

I can only work part time, recently tore a hip ligament probably compensating for my back, and have some knee problems due to this as well....

on 12/30/2010 7:04pm

I have been plugging along with physical therapy, aqua therapy, chiropractic, and numerous opinions from orthopedic spinal surgeons and neurosurgeons....not unbearable pain....but worsening day by day. I am also 47 years-old. My curve started at S1 and continued snaking it's way up through T10 or 11....and I just had two surgeries to stop the decline. Yesterday was the one month mark since the 2nd surgery. It was a very, very difficult 3 week-long hospitalization with two 10 hour surgeries one week apart, but I made it through and am getting better every day. My husband and I agreed that it was a good choice to get it done before I became any more debilitated. A local neurosurgeon recommended aqua therapy a year and a half ago and I did great with that for a while....then it wasn't enough. My curve progressed to over 50 degrees in one direction and I'm not sure what the compensating curve was back the other way, plus in the last month or two before surgery the spine actually kinked. It has always also been rotated or twisted and I had bone spurs, arthritis, bulging disks, etc. So far, only one month out, I am in no more pain than I was before the surgery and am anxious to have this long section fuse so I can get back to living my life. 47 was too young to have my husband carrying my purse around for me...and we had to quit camping, hiking; even boating and walking were becoming difficult. I have no regrets about the surgery....and I got two MORE opinions before making my decision....both of those doctors said "doing nothing is no longer an option". One vertebra had deteriorated to the point where doing anything to save it was impossible but they were able to correct nearly everything else. If I had waited another year or two, I doubt I would have been able to continue to work and live with the pain. If I had waited another five years, I doubt I would have had the fitness level and positive mental attitude needed to get through traumatic surgeries like this. Find a doc and physical therapist who will help you get in the best possible shape of your life....then go for it. I'm not sure if I'm allowed to post the surgeon or hospital's name here or not but I am willing to share that information if you're interested in hearing more. Good luck, sister, I've been there and I do understand how painful and scary it is.

on 01/04/2011 12:05am

Thanks sooo much Beth Ann!
Wow, please keep me posted ok? May I ask exactly how debilitated were you prior? How much pain were you in most of the time on a scale of 1 - 10 with 10 being the most.
I too have given up some things over the years such as biking, skiing, boating, hiking, diving, sitting for over 2 hours, etc.... I have adjusted most of my activities over time but I am still able to do quite a bit.

Since I am still able to do so much currently and NOT doubled over my bed this year (i was this past year and it was taking 20 minutes just to get out of bed), its hard to imagining opting for a surgery, but it would be to prevent further deterioration and a larger surgery later.

I think your insight would be very helpful.
I am sooo happy for you that you are healing so well and I will pray for a healthy, pain free 2011.

on 01/04/2011 7:04pm

There aren't that many people out there with such a long fusion. Most people (in fact I met someone today) have 3 or 4 vertebra fusions. I just looked at my operative reports....they're complicated....but the final outcome was S1 through T11-12 correction, partial rib resections to get at the spine during the first surgery, and the rods, I think, extend from S1 to T9....all the way through the lumbar spine. I'm not sure what is holding the correction at T10-11-12 in place other than the titanium wedges and allograft they used. I see the surgeon Thursday so I'm going to ask him to clarify.

Blah, blah, blah....no one will have your exact problem, not even me. You asked about my pre-surgery pain. I was in daily pain at about 4-5 and sometimes worse. After beginning aqua therapy, it lessened considerably and I remained very active and ambulatory, working full-time on my feet all day as a teacher, camping, doing yoga. After a year or so, the therapy just wasn't enough and the collapse seemed pretty quick after that point....what had taken years....sudden collapsed that much again in a matter of months. The doctors said this is very unusual for an adult to have this degree of scoliosis progression though so you might have a different outcome. Several doctors patted me on the head and said don't worry adults like you will progress less than a degree a year at most.....I should have done the math on that ten years ago and it would have been easier on me with less loss of mobility and a smaller fusion. Live and learn. In the six months leading up to surgery, I continued 'training', physical therapy or yoga at least 4 or 5 times a week, and my pain some days was a 4 or 5 and other days I had to set my purse and lunchbox down in the parking lot after teaching school on my way to the car because I could barely stand up.....about a 9. It's hard for me to judge the pain because I have lived with it for so long....I haven't had 'zero' pain since I was 20 when it comes to my back/scoliosis.

I'm about six weeks out from the surgeries (not quite) and I feel like I made two s'mistaes.'The first was not checking out my insurance coverage thoroughly. They denied inpatient rehab that the doctor ordered and I expected to go straight there from the hospital for up to two weeks. I have spent the past month at home basically doing very little in the way of physical therapy with PT coming in only once a week and not adding any new exercises, in fact, he took away two that were hurting my hips. That part has been frustrating because I feel like I might have had a better jump-start on recovery, and these first few weeks are important, and I'm sitting here.... waiting to get started. Also, I didn't realize I would be wearing a brace all the time for several months except when lying down and a bone growth stimulator four hours a day which is like a second brace....and they each cost about $2500. I don't know yet if my insurance will pay for them so be sure to see if you have coverage for 'durable medical goods' and what that includes. I might be taking a bath on those types of items and there is nothing I can do at this point....should have checked first to be prepared.

The other mistake was thinking I could completely depend on my husband and two daughters (17 and 19) to care for me. They were very gung-ho while I was in the hospital but I guess it is easier to watch the nurses come and go and help here and there in a hospital setting than to recreate it all at home. In their behalf, they were awesome helpers in the hospital and weren't expecting me to come home. In my behalf, this is a really, really big deal and I have rolled the dice on the outcome, and I'm supposed to be resting, doing the simple exercises, lifting nothing 'heavier than my coffee cup' & physical and occupational therapy; and I've been doing all the cooking, laundry, etc. So make sure you have plenty of ACTUAL help that will show up and be reliable and do it on before you start down the surgical path. Being stuck in the brace for 10 or 12 hours because nobody is home to help you is tough mentally and physically.

I'm still hopeful that my outcome will be successful but I wish I would have checked out those two things first....insurance coverage and help at home. I' still highly recommend the sooner rather than later approach and making sure you have everything in place before the surgery because after it's just too tough to have to deal with those issues the first couple of months.

I know someone who had a one-stage procedure for a 50 degree curve in her upper back and she had lots of help, a cleaning lady, great insurance coverage, and was literally traveling 7 weeks after surgery and running 3-5 miles a day (not every day but when she wanted to ) within 6 months or so. There are plenty more success stories out there....I hope they find you. Keep me posted when you make a decision and I will focus all my positive thoughts and energy on a perfect outcome for you!

on 01/05/2011 1:27pm

Beth! I am sending you LOTS of positive energy and prayers for a speedy and successful recovery. It sounds like we have similar issues and the surgery would be similar as well. Your pain and my pain are also similar... Some days I can run around, hit the gym with light weights (even surf small waves) and other days cannot even bend over without alot of pain. Six months ago I couldn't even get out of bed for twenty minutes and couldn't even make it to the bathroom without collapsing. Since then I've been doing much, much better.
Yes, the surgery proposed at this point is T10-S1 and as I wait and it progresses my doctor thinks that within the year the surgery would look like T4-S1.
So wait until I can't get around, and am in soooo much pain that the surgery is a must or do it now and take the risk of it now relieving the pain and possibly creating more problems (more surgery)? The doc mentioned that with a surgery this large that its quite possible that not all levels of the fusion take which would mean additional surgery.
I appreciate all your time and sharing your experience with me. I wish you were in the Bay Area, I could help you. I look forward to talking with you soon Beth.

on 01/06/2011 3:37am

Hi, I'm sorry to hear that you are in such pain. I hope you have a good surgeon and I'm sure the decision is really hard. I'm facing the same surgery for my 12 yr old daughter and very torn. She was diagnosed with Scoliosis at age 10 with a 49 degree upper thorascic curve. She has no pain, but the shoulder blade is prominent and she has a rib hump, moderate. Despite 1.5 yrs of bracing, it has progressed to 58 degrees and they are recommending posterior spinal fusion surgery. I have 3 opinions, Shriners, Army and private spinal surgeons. The Army surgeon comes highly recommended by respected doctors , so I know that he is very good.The problem is there is very little literature on people who had it as adolescents and didn't have surgery and the issues they are facing many yrs later.
I was told that the main reason is to avoid long term lung/heart issues, but one doc said it's doubtful she'll ever reach 100 degrees, where this becomes an issue. He said the main reason to operate now is due to her flexibility and to avoid future pain (she has none now) and worsening deformity. It seems like the untreated condition for you has really caused immense deterioration of your disks, bulging, etc.
My questions are : did you have this in adolescence? How long have you had these issues-is it recent after say 30 yrs of having the condition, or has it gotten progressively worse just recently? Any information I would appreciate, for sometimes I feel the risks of the surgery don't outweigh what "may" come about and the surgeries in 40 yrs will be far superior than todays and to deal with what comes up as it does later rather than subject such a young child to such a risky procedure, but maybe I am just very naive to the detriment this condition causes.
Thank for your time, I know that you are very busy, any advice appreciated. Julie

on 01/09/2011 8:49pm

My scoliosis was in the 20 degree range as a teen, progressed to around 35 or so degrees after pregnancies at 28 and 29 years old, and then after a variety of specialists had predicted less than a degree a year at most deterioration with age, started rapidly progressing a couple of years ago. Everyone is different and this is a very difficult decision to make for your child, I am sure. There is no way to predict the future and I worried, too, that a better treatment could be right around the bend....and I acted too soon. I was always told 50 degrees was the break-point for surgery; I never heard of 100 degrees but my curve was from the sacrum all the way through the lumbar and part of the thoracic spine...your daughter's sounds much higher....that is all game-changing. You are smart to get multiple opinions and also to avoid the urge to doctor shop until someone tells you what you want to hear. I wish someone would have acted more aggressively with bracing and exercises when I was a teenager. My daughter, now 17, had a curvature that was either 11 or 13 degrees when she was 13 years-old (memory fails me here on the exact degree) and it corrected with exercise, but after my recent surgery she confessed that her back has been really hurting and asked to go back to the pediatric orthopedist just to make sure it isn't the scoliosis rearing it's ugly head. Good luck and keep a positive thought for the right doctor to present him or herself.

on 01/24/2011 8:55pm

Hi ftpanelli,
I just saw this site and read your posts and the responses. I am 48 and have scoliosis, and few of the things you mentioned. I was also told that my curve would not change as I got older. It did, seems each year since I was 45 it changed 3-5 degrees. In the Fall of 2010, I decided, after doing lots of research and talking with others in my same position to have the surgery. I am glad I went through with it. Remember we go through menopause and this also takes a toll on our body, especially our bones! I had my 10 and a half hour surgery on December 9th 2010. I have the rod and screws, and a level 2 fusion. I can honestly say I do not have pain, I have an ache, but it gets better each week! I do not have to wear a brace,but I do wear a bone stimulator which is very small, the size of a cell phone you wear on your waist with only 1 electrode on each side of the incision for about 6 hours a day. I also have in home physical therapy twice a week. Please consider having surgery while you are in relatively good health and young enough to heal quickly.

on 03/07/2011 2:18pm

Yes, I have had extensive scoliosis 2 stage surgery, November 10, 2010 and November 15, 2010 in Tampa, Florida. I am 59 years old and only developed scoliosis in the last 2+ years. No x-rays prior to this showed a problem! I will quickly tell you that if you still have a semblance of normal in your life, I personally would not have this surgery. Now remember, this is me talking, you must make your own decision. I have a history of past injuries: horse fell on me in 1967 & horrid car accident 1983. As a result, I had already had MANY laminectomies, a spinal fusion L4-5, S1 (common location) + spinal cord stimulator, morphine pump ( I had removed 6 months later in 1990, as I was not dying, just felt like it at times). By the time my scoliosis surgery date #1 came, I could not stand even 5 minutes, and I had not slept in a bed in 4 1/2 months. My spine looked like a stack of dominoes that were falling in different directions. When I did try to lie in my bed, both feet would go totally numb. Twice I tried to get out of bed & couldn't stand up at all to go to bathroom. Husband had to get our office rolling chair to get me to toliet. So I no longer had any semblance of normal....none really at all. I know without doubt if I had not had the surgeries, I would be in a wheelchair now and forever. So I am very grateful the surgery was available, but I have never in 53 previous surgeries had anything so horrendous previously, including my spinal fusion in 1975! I am now 3 1/2 months postop and I am suffering greatly! But I can stand now, walk to grocery shop, go to church on my on two feet, and sleep in my own bed. My biggest complaint is this feeling concrete is underneath my skin on my left side of my midspine. This is always when I have been up extended periods, sometimes upon awakening, going to bed, etc. But when I rest my back against something I get relief. Of course, I am now fused from T9 to S1, with two rods on either side of my spine, 24 long screws into my vertebrae, with 10 discs removed and replaced with non-ferrous cages packed with cadaver bone and other things I really don't care to remember at this point. I was in ICU 12 days, apparently screaming for days for God to take me, but I do not remember those days blessedly. But I will encourage you with this.....if you or anyone reaches the point where I was...DO IT! I do not regret it for one minute because I did not have a choice. I am told it could take me one to one a half years to heal. That is a short period assuming that my bones do heal and my pain grows less. I am with a pain management doctor, it is essential. But I know when I begin to heal, I will slowly use less meds. Until then, I am eternally grateful to God that Dr. James Billys is on this earth and such a wonderful, compassionate doctor, not to mention his two Nurse Practioners. I hope this helps.
May the Lord bless you as you seek the best possible physician in your area.
Southern Lady

on 03/08/2011 6:46pm

I am new to this kind of thing, talking about my pain and surgeries, but am at a loss as to where to turn. I am fused from S1 thru T9 with instrumentation. My last surgery was about a month ago to place a spinal nerve stimulator at the T9 position. I now cannot seem to move without something popping or cracking, and some of these are pretty painful. Finding others that have spinal fusions to this degree is difficult so it is hard to get answers as to what to expect and what is normal/abnormal. I should note that I do not have Scoliosis, my surgeries came as a result of an injury.
I pray for all who go through what you do. May God give you the strength you need to see you through each and every day.

on 03/08/2011 9:32pm

Scott: Hang in there. My surgeries were in November 2010 and it was just this week that I woke up one morning and told my husband "I think I'm going to be okay".....and the next day felt pretty rough again. It's a long hard haul for some, easier for others...everybody is different. I hope you continue to heal, take it easy on bad days and don't over-do it on the good days! There WILL be good days and sooner or later they WILL outnumber the bad days. I am due to go back to work full-time as a teacher at the end of March and am very nervous about my ability to do it....I just keept telling myself to have Faith and not Fear. Blessings. Beth Ann

on 03/17/2011 7:06pm

Hello, Beth Ann I hope you are feeling better each day now. I know that feeling of a good day and you think that "ok, hope that this is the beginning of the end", then boom, you have a bad day! I am 10 weeks out from my last surgery and I feel like I am finally having more good days than bad. I have to wear the bone stimulator 12 hours a day & do very light in home physical therapy. I do not have to take pain meds any more. I go back to the doctor on March 28th, I am hoping he releases me to start real physical therapy, as I think this will help my leg pain. I am not back to work yet, but again, hoping the doctor will release me to drive and work! Are you working? Can you drive? Do you have osteoporosis also? This is a great site to get info and to help you feel like you are not alone, I just wish there was a place where you could personally e-mail somebody...maybe there is and I am not aware of it, do you know of a way?
Scott, I too have popping and cracking in my lower back. The doctor told me this is normal to a certain degree. It is painful most of the time when it pops, I also feel like something moves around in my lower back. I can only lay on my back and I feel as though I am laying on a brick in my lower back area. I was wrong in my earlier post stating I have a level two fusion. I am fused from S-1 to L-6. Not sure if this is considered one fusion or what. The doctors are confusing at times with their talk! Good luck to you both and Thank you for sharing your pain and frustration!
Take one day at a time and remember you are not alone~~Karen

on 03/18/2011 3:19pm

Hi Again fellow sufferers!
I am one of the blessed souls who had a two stage fusion, removing 10 disc, replacing them with cages filled with cadaver bone, two rods, 24 LONG screws, etc. I am fused from between my shoulder blades down to my tail bone. I am about 4 months out (Nov. 11 & Nov. 15, 2010) and I am still suffering a LOT. On pain meds, would probably commit harry-carry (whatever that is) without meds. I am able to drive, walk about, NOW finally can lie down to sleep in my bed, and have a semblance of normal life again. I can go to church on Sunday and stand while there as desired,sit when wanting too, all of which was NOT possible prior to these last two surgeries. So I know I did the right thing having the surgeries. The doctor went thru my ribs first surgery to remove discs, second surgery went through the back and I look like a track pulled a tiller, that turns over dirt with blades, has been run up and down my spine!

I often feel as if I have a sheet of concrete underneath the skin on the left side of my spine about midway. I know it has to be muscles tightening up, but yucky to say the least. I am guessing that most of my pain now is muscle, but there are nerve pains too, again guessing the nerves are growing back. When I came home from surgery, I was absolutely NUMB (NO feeling) from above midback to down my hips. Slowly it is coming back. I too wear a bone growth stimulator, but only 4 hours a day for 9 months!!! I hate it, but if it will help with the healing, so be it. I am having a problem because apparently the doctor did not put enough curve in my lower spine and I am having a very difficult time straightening up completely. Has anyone has a similar problem and if so what did you do, or what eventually happened?
I am like everyone else, I feel very alone with this pain and concern over my healing time. I do not know anyone who has had such radical surgery. I didn't have a choice or I would be in a wheelchair now. I developed scoliosis at 58, a year ago, out of the blue & it progressed in a year til my vertebrae were falling over literally in different directions. I slept sitting up for 4 1/2 months and couldn't stand two minutes without my legs giving on me.
I had been diagnosed with Marfan's syndrome years ago, but my doctors previously all poo-pooed it. Not so much now. I am SO grateful for this outlet and the information you all have put here. Please everyone, continue to write, it helps me and I am hoping I am helping someone at the same time.
Southern Lady (leaning on the Lord a LOT, but He tells us He is more than able)

on 03/18/2011 6:58pm

Hello once again,
Southern lady I really feel for you. I don't know anybody who has been fused like you. You are driving already? My doctor has not released me to drive yet :( and my last surgery was Jan. 7, 2011. I am thinking maybe because my right leg is still giving me problems, never had a problem with it until the surgery. I have constant pins and needles going on, just on the inner side just above my knee down to the middle of my lower leg. I have to wear a knee brace that has hinges on it to help support me when I walk. I do not use it at home, I do pretty well around the house. You say LONG screws, why is that? Do you have osteoporosis? I do...very badly. The doctor is worried about my screws staying in due to my bones being so porous. Can you bend over at all? I just can't imagine being fused the length you are. I check this site often so feel free to vent...I know where you coming from!! I just wish there was a better way of conversing with the ones who post, like I should be able to click on your post and reply to it, sometimes I forget what was said by the person I am replying to! Sorry for rambling....hang in there and have a great weekend!!

on 03/19/2011 12:21am

reply to karenlee
yes, I can bend at the hip! Amazing how well l can bend, but when you think about it, that is where the majority of your bending is done. In response to your pain in your leg, I had excruciating nerve pain on the top of my right thigh (never had any problem at all there before!) and I was terrified that it would never go away because it trumped prior pain, believe it or not, but thank the good Lord, it did go away. Seemed that it took about 1 1/2 months. My right leg was extremely weak in the beginning too because my surgeon went through my right ribs (had originally planned left ribs, but they told me I would be lying on my left shoulder and that would not do as I have had 5 left shoulder surgeries, the last being a partial shoulder replacement and my pain is bad lying on it). The doc warned me the side where he went in between the ribs would have temporary leg weakness and I did. But both improved dramatically so be encouraged that your leg will improve, particularly since you get around your house without your leg brace.
Just thought I would throw that out right now before I go to bed for your encouragement. We all need all we can get that is honest in regards to our own personal experience. Of course, we are all different and no surgery is the same.
But I wish you the very best.
As ever,
the Southern Lady

on 03/19/2011 9:33am

Hi Karen ! I do not have osteoporosis and that was part of the reason I was moved to act now. I'm 47 years-old and didn't want to wait ....and the collapse of my scoliosis was happening so rapidly. No I am not working but I go back March 29th and I'm very nervous about my ability to be on my feet for 7 or 8 hours a day on a concrete / tile floor. I have been having nightmares about going back to work but, financially,k we have no choice....so today I woke up feeling more positive and thinking I will go back one day at a time...and then another....and another...and not worry about the long term. I am in pain but off all pain medications. I haven't even been taking Tylenol, first of all it doesn't do much for me anyway, and feeling a little pain is a good thing or I overdo it and hurt myself. My doctor is adamant about not taking any other over-the-counter pain medicines, which helped me in the past, like anti-inflammatories (Aleve, Motrin, aspirin, etc.) because they can inhibit bone growth. If I can, he wants me to hold off on that until the one year mark next November because my fusion is so long that I have a LOT of bone to grow to keep all the screws, rods, and cages in place. I wear a bone growth stimulator 4 hours a day and I'm not sure how I'll make that work when I go back to work but ...one day at a time. I am very fortunate that Dr. Uribe was able to do such an extensive repair and leave no residual damage except for a little sensory loss on the right arm and let which is returning over time and with massage therapy....and that I had such a positive experience at the hospital in Tampa. I wish you all the best. I know it's hard to stay positive -- I struggle with that every day but I know it's key to healing well. Take care. Blessings.

on 03/19/2011 12:45pm

to: Karenlee
I did have early osteoporosis, but I was put on Boniva which you take one monthly for it and my osteoporosis has reversed!!!! No kidding. So I would encourage you to talk with your doctors if you are not on at least something for the osteoporosis. I could not take the oral meds as they hurt my stomach and I think in the long run it may have been a blessing because the Boniva works SO well. Just hang in there everyone. I realize we are all sort of leaning on each other and that is not a bad thing.

Hope this helps someone!

on 03/21/2011 2:56pm

Hello, Thank you for the words of encouragement Southern Lady. I too had surgery through my left ribs to add cadaver bone, this took 5 hours, then immediately after that, he went through my back to do the fusion, rod, & screws, which took another 6 hours. So needless to say I was face down for 11 hours and my face was VERY swollen to the point I was unrecognizable. I did take Boniva, but I have GERD and it was destroying my esophagus so the doctor took me off and said to take over the counter calcium..had I known my osteoporosis would continue to get worse I would have looked further into another doctor who would have taken my score more serious. After my surgery I was given Forteo, a daily injectable bone growth medication, which I do not take due to the "black box" warning that it is known to cause bone cancer....so I am now going to an osteoporosis specialist next week.
Beth Ann I am glad you had your surgery while you are still young. I just turned 49 this month, my scoliosis was rapidly getting worse also. I am glad I had the surgery now. I also had a positive experience during both of my surgeries at Loma Linda University Medical Center and had a GREAT surgeon. I also wish I could take Advil, but like you, my doctor says no. I can't wait to start outpatient physical therapy so I can get muscle strength back in my legs. The doctor won't release me until he see's how my fusion is doing at the end of this month. I am sure it will be fine! He says no work until at least May 15th. I would love to go back now, but my job is hectic and requires a lot of walking and standing.
Has anybody had physical therapy? If so, did it help?
Thank you for listening and for sharing your experience, it really does help to know we are not alone in how we feel! Have a great week :)

on 04/10/2011 8:42pm

Hello, Beth Ann, Southern Lady and others. Today is my first day on this site and I am so comforted by your words. Thank you!
I was diagnosed with scoliosis in middle school. My curve started at 18 and now at 24 it is in the 50s. I am in the process of interviewing surgeons. My biggest struggle now is to find a surgeon and/or physical therapy person who understands that scoliosis affects a lot in the body. I suffer daily migraines, level 5 plus pain in my back, shoulders, and neck. I found a doctor in Pittsburgh but he says he can only stop the curve from getting worse, he cannot address the pain and the migraines. He does not believe that my symptoms are connected. This seems like common sense to me. My right shoulder blade wings out, causing a lot of muscle tension in my back, which moves to my shoulders, which moves to my neck, which gives me migraines. I also suffer sensitivity to light and sound. Does anyone else have these symptoms?
I would love to know if anyone out there has doctors that address all your symptoms, not just your curve. I believe I need someone who will take into consideration my body as a whole, not just one aspect. I have an appointment on Tuesday with a doctor at Cleveland Clinic. I heard good things about the clinic. I'd be happy to let you know what I find. It seems like most people have already had surgeries though. Please share your experiences with me and I'd be happy to answer any questions about mine.



on 05/27/2011 5:11pm

Dear BethAnn
How are you doing? please tell me how you are feeling and how things are progressing. Are you able to be active yet?
It's been a while and I am still plugging along, too scared to do the surgery yet.
I know you mentioned some names, so if you can provide i would be grateful.

on 05/27/2011 5:18pm

Hi Heather,
I just read your post and I feel for you. It is difficult to find one person to address all the symptomatoligy. If you can find one person who believes in a multi-faceted approach and is willing to speak with or at least review other findings that is a good sign. Personally, I have several professionals who all approach this a bit differently. All offer some relief but not the same of course and not total relief by any means.
I have had an active release chiropractor, and a 'network spinal analysis' chiropractor, acupuncture, yoga guru, body worker etc. I had 2nd,3rd,4rth and 5th opinions and only 2 agreed initially on a course of action, but now they differ in opinion. It is confusing and gets very expensive. Key for me is 'will waiting damage further or cause problems for pending future surgery success or serious problems to your health.... even then I am confused....i want to speak with some patients who have had this extensive of a surgery and hear their stories....
God bless, and keep me/us posted.

on 05/27/2011 10:19pm

I JUST saw the surgeon for my six month follow-up yesterday. Everything looks great.....he said I have three or four screws loose....then said "just kidding"....not funny :) I am doing great. I still have hip and rib pain but he said he literally had to crack my ribs to get to the spine through the side and the pain was to be expected and that my whole body structure had changed so to just keep working with the hip pain and not to worry; that it takes time to undo 47 years of the way my muscles have been trained. He turned me loose to start swimming again which is good. I went back to work teaching school 6 weeks ago and, as he predicted, it was probably too soon to be on my feet all day and I'm getting a little more tired every day....June 10th can't come soon enough and then I have six weeks off to rest. My back pain from the scoliosis is gone. I have maintained the weight loss and he said to stay slim to help my recovery and not put any extra stress on things. Dr. Uribe at Tampa General/ University of South Florida saved my life -- or gave it back to me -- and I really had no idea until now how debilitated I was becoming. It's still a struggle going up stairs to our condo, carrying groceries, etc. but I just try to do what I can and not push it too much. Dr. Uribe said to use my own good judgment and if it hurts, don't do it. He said it will take a year for recovery and I'm only at six months but very pleased with the results. I wish I would have ironed out the rehab with my insurance beforehand because it would make daily life much easier -- no one ever 'taught' me how to get dressed and do other activities of daily living without bending from my sacrum to my chest and that has been frustrating trial and error but what's done is done and I'm working that out on my own. And for the other new addition to this discussion (can't remember her name as I'm typing this), I saw only two physicians in the beginning (after my local neurosurgeon said it was too complex for him even though I really liked him and he gave me great treatment and advice), and both of the 'big guns' neurosurgeons (in Indianapolis and Tampa) both said the same thing, waiting was not an option, and both recommended the two-stage procedure to straighten my spine and then a week later put the rods and screws in. I'm glad I did it.....but I'm also glad I didn't know ALL the details before or I would have chickened out. Best wishes and blessings to all.

on 05/28/2011 12:13pm

I am soooo happy to hear!!! Wow you sound like you are recovering really well probably because you are a good patient :) i can't believe you have been back to work already!!! and now swimming!
I am glad you are not in too much pain and that in time it sounds like what you do have will subside to a great extent!
are you still wearing your brace?
You have been a source of strength and courage....thank you for sharing your experience.
Please keep me posted. i am sending you love and light.

ps : was your doc able to preserve your 'lordotic' (normal lower back) curve? i understand this can be a problem with fusions....

on 05/29/2011 9:05pm

I have no idea about my 'lordotic curve' but I know I'm not 'bendy' anymore. I have tried to do my old yoga and it's a work in progress. I don't feel like I could participate in a class now without being a distraction....still need to iron out how I can move myself into different poses. The doctor just said I could swim now....I haven't tried it yet so we'll see how it works. I'm hoping to do a trial run tomorrow since there is no school for Memorial Day. My scoliosis pain is gone and my hip pain and rib pain is probably not worth mentioning. I took my first Tylenol today in maybe three weeks. I'm not sure if I'm not IN pain or if I was just so used to the daily pain that ramped up year after year that I don't notice or medicate for what to me is 'mild' pain now. Again, everyone is different and I do over-do it sometimes carrying groceries or coming up the stairs which we didn't have before the surgery....lived in a house and moved to a condo without ever giving a thought to how difficult stairs might be for me after back surgery. Please keep ME posted if you decide to take the plunge. I am so much better off and the only hitch (and today is the last day I'm letting myself be discouraged) is that, when I saw the doctor for my six month follow-up last Thursday, he said he didn't see evidence of bone growth yet and that I could stop wearing the bone growth stimulator, which I had been doing 4 hours a day faithfully as directed and was told they should see something growing by the 6 month mark. I've cried over that a few times but I knew going in this was a long fusion and I guess it takes a LONG TIME to grow a bone if it takes a kid 6-8 weeks to heal a broken bone, right? My husband pointed that out to me :) Keep me posted. Beth

on 05/30/2011 8:06pm

You are a work in progress! ...and one day at a time is truly what this seems to be....difficult to stay in the moment for me but i guess i'll have practice. I'm so impressed that you are going to be swimming; and even thinking about yoga is a 'right of passage' in itself... and a great indicator of where you and your healing are at right now. Believe in the power of your body/mind/spirit to heal yourself as you are - as you are blessed.

on 06/08/2011 10:56pm

I have discovered, in treating my son's infliction of Idiopathic Scoliosis. Scoliosis is caused by tension, from a tight tendon. When I started my treatment on my son Matt, after a year of 18 to 20 hours daily in a brace. And physical therapy 3 times a week. His angle had increased from 60 degrees, to an increase of 7 to 67 degrees. When I started working with Matt. He stood crooked, walked crooked and drug one leg. I had an X-ray taken, and a cob angle measurement done. Matt’s angle is now less than 50 degrees, without surgery. He no longer has a low shoulder, walks with no problem. And runs with perfect form. I have started a web site, to spread my discovery.
I know I am right, by the improvements I was able to get with my son. No one should ever have spinal fusion for Idiopathic Scoliosis, it would have to put the back into so much more tension. Doctors now see an angle needing correction, not tension needing to be removed. I just cannot understand, how people highly trained in cause and effect theories. Would be doing what they are doing.
Scoliosis should be treated by a physical therapist. To stretch the tight tendon, that causes Scoliosis. I worked as my son's physical therapist, removing his tension. The tension needs to be recognized and removed, before any angle is created. The current spinal fusion surgery would have to put the back into tremendously more tension. That is the reason 90% of recipients are classified as 100% disabled, in their lifetime.
Scoliosis can be treated by a Chiropractor if they understand that Scoliosis is caused by a tight tendon and know the tight tendon to stretch.
The progression of Scoliosis is caused by different factors. Which are all originated from a tight tendon. How can a doctor look at the distortion of a back that is classified as Scoliosis and not understand a tight tendon causes Scoliosis. Tension is the only probable answer. To cause a back to get that distorted.
I was about 3 months from my son's scheduled spinal fusion surgery, when I started my treatment, on my son. I saw improvement almost immediately. It is so simple.

on 07/11/2011 1:43pm

Hello Everyone! Well I hate to be the bearer of bad news (at least it is for me), but I have reread the notes here and all mine had been very upbeat and positive, but I must update you as I think this is only fair. I am now over 7 months post op 2-stage scoliosis surgeries Nov 10 & Nov 15, 2010. I was doing well considering everything, but several months ago my husband brought to my attention that I was leaning forward constantly and I needed to slow down and just pay attention to how I was standing. So I tried....I realized to my great dismay that I am frozen in a forward pitch (seems about 45 degrees to me, but I am sure it is not that severe). I have made it seem as though I am more straight by standing with my knees bent & I didn't even realize I was doing it, but knew my right knee was beginning to hurt (never before)! I saw my surgeon, he did x-rays and admitted that he did not put enough of an arch in my lumbar area and nothing I do will make me stand up straight. Now I BEING TOLD THAT I NEED CORRECTIVE SURGERY & I will get worse it seems! I need to quickly add that not only am I bent forward, I am beginning to lean to the right also, but as important as anything is I am having unbearable knife-like pain, mostly on the right side of my spine, but they happen all over my trunk area in the back. I realize it is because my muscles are being strained forward and I can't stop it. I am horrified to say it lightly. I discovered a patient site, similar to spineuniverse.com, but it is SCOLIOSIS.ORG & all the patients have scoliosis. There is a separate adult group if you look. I was very encouraged there and then I discovered a lady who has had corrective surgery and she is now bent again in 4 months. So just be careful, ask tons of questions, seek a specialist in your area. Don't allow yourself to get so bad that you will settle for anyone that will try to operate on you immediately unless they are accustomed to dealing with scoliosis patients on a daily basis!! I just want others to not make my mistakes.... Blessings to you all!!!!!!!!

on 04/26/2012 9:25pm

Hello All!
Well I finally had surgery 3 weeks ago! A spinal fusion with instrumentation T10-L5.
The doctor and I decided not to do S1 in an attempt to retain as much flexibility as possible even if just one level.
The first 2 weeks were hell. The pain was unreal and I did not get effective pain management at the hospital at all. Finally at day 11 we got the medication issue straightened out and I turned a corner. That type of pain is all consuming and being nauseaus, unable to eat and suffering definitely prevent any progress from being made and throw you into survival mode. I must stay on top of my pain management or i go into a downward pain spiral.

I did stand the day after surgery. They had me up and walking down the hall on day 2. I have gone from walking 1 block to walking up to 25 blocks. I do have pain, numbness in the buttocks and right thgh, tingling, tightness especially in my stomach and back areas, but I am told this is normal considering the size of the surgery and the fact that now my body is in a new alignment after being the way it was for so long. It will take quite some time for muscles, tendons , nerves to recover.

I have a back brace I must wear at all times i am out of bed for the next 6 months.

Its been a challenge realizing I can't do everyday things like bend over to pick something up, get into bed, use the bathroom, put on shoes. I am having to learn other ways to do things. And some things I just cannot do period.

I have my first appointment with the Doctor on week 6. At this point I am mostly resting, walking every day and being careful not to twist, bend or lift.

on 06/16/2012 4:24pm

i read your story and I have a condition that is similar to yours. I too have scoliosis, but mine is congenital. At my most recent orthopedic visit, my doctor reviewed my MRI results with me, and told me that I have this condition called Klippel-Feil syndrome (which basically is characterized by congenital fusion of any 2 of the 7 cervical vertebrae), which in-turn caused me to be born with scoliosis. When my mom and I first discovered I had it at about 14/15 years old, we thought it was idiopathic (no known cause), but like I said, my MRI proved otherwise. I have been to countless chiropractic visits, physical therapy appointments, etc for a few years, and I'm 22 now. So I guess my advice to you is to just keep pushing through and keep seeking those 2nd opinions, or 3rd, etc. Hope this helps!!

on 10/24/2012 10:09pm

Hello Everyone!
6 month check-in! Awesome!!! No and I mean no pain. I am very active, walking, spin cycling, gym, etc. The only times I know I had a fusion are getting out/in bed, rolling over, trying to tie my shoes and no surfing at this point.
I feel so much better now than prior to surgery, no aching, numbness, no pain etc.
I am grateful to my surgeon.