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View Full Version : Success stories YEARS after surgery?



scooter950
03-18-2007, 08:48 PM
hello,all- I joined last year, summertime, and I have been lurking, when I'm able to get some computer time,. My question is this: how long after surgery do you continue to experience pain relief?

I am a nurse, and I work with an ortho surgeon, and he keeps advising me against the surgery. Now,I'm still fighting with my insurance (Tricare military) in order to obtain a second opinion from Dr Shelokov. So surgery may not even be an option for me. BUT! The ortho doc I work with tells me that the pain relief lessens with each post-op year. He said it's common for people to feel better the first year or so post-op, but then the pain returns.

I just wanted to ask everyone's opinion/ experience. Maybe there's other lurkers out there who have had surgery years ago- or perhaps everyone feels so much better post-op that they stop coming back to this forum? (because they're so active, we hope!!)

well thanks for reading, I am hoping, praying and working to obtain authorization to see Dr Shelokov. I hate managed care!!

God bless~ Jamie ""Scooter950"

spincon58
03-18-2007, 11:16 PM
Hi,
I had surgery at 45 and had a 53 degree curve that was progressing..and I did have pain..I thought long and hard and decided that my quality of life would be better having the surgery. I quess your doctor knows that scoilosis surgery sometimes leads to revision surgery and he doesnt want u to experience problems...but its up to you..he doesnt feel your pain(if u have any) and hes not in your shoes) anyway u know what i mean....
OK..I was doing great post op ..it has been 2 1/2 years..doing everything...and than all of a sudden really sudden I started getting pain between my shoulder blades..its been getting worse. the hardwear is irratating my muscles and nerves...he's talking baout taking out the rods..I'm 48 and very active....Id rather have a tummy tuck than spine surgery!!!

Shari
03-19-2007, 12:29 AM
Hi Jamie,

I understand how your profession gives you a different view on ortho surgeries. Any kind of ortho surgery is painful. And you see it everyday!!!

Can I ask if the Dr. you work with has ever done scoli surgery? There is no doubt that it a painful surgery to go through, but any kind of ortho surgery hurts like hell.

I had 1/4 inch of my clavicle cut off, got a finger caught in a belt sander and lost some bone there. My point is that, when it involves bone injury or intrusion, it's painful, but it does eventually go away. And I'm sure you know that.

I still have some pain after my surgery, but it doesn't even compare to the pain I had before. And to be honest, I can do more and more with each passing month, but I do have limitations.

Linda R. has a "pro" & "con" survey that may help you. I will say that my family Dr. and my PT were both negative when I brought up the subject of the surgery. And no disrespect to either one of them, they weren't really aware of the actual procedures that are being done now.

Now I feel like I'm their circus freak, they constantly want to know what's going on with me.

Shari

scooter950
03-19-2007, 10:28 AM
Hi Shari! Hi Spincon! Thanks for sharing your experience- no, this ortho doc is more a friend than a boss, and he doesn't perform back surgeries- he refers all back patients to a different ortho. I've explained to him that I have daily pain- but he sees me at work, I'm dressed in clean clothes, and I'm functioning ( or at least trying to !!). Once he starting asking me how much this affects my life, and I think he was surprised at my honest answers ( no activities except for work, supermarket and church; very limited exercise - walking- one mile in twenty mins.; constant pain, even when I'm asleep- wakes me sometimes!). But he still discourages the surgery- hey, I don't want it either, but I want to be stable. I cannot sing in church, because I can't exhale as long as some of the notes.

Anyway- thanks Shari for telling me about the pros & cons survey, I'll check it out. Also- Shari- how long ago was your surgery, if I may ask? I am curious about how long the relief lasts. I'm also really concerned about feeling the cold metal in my bones... "bone cold" ugh! If I even am a cadidate for surgery. Big If. I just learned that Dr Shelokov does NOT accept my insurance. so it looks like I'll have to try Houston... anyway thank you for sharing! I have learned so much from all the posts! Jamie
scooter950

dorigirl
03-19-2007, 10:55 AM
Hi Jamie,
Just wanted to share that I am a Tricare patient as well. I had surgery 6 months ago with Dr. Kebaish at Johns Hopkins in Baltimore. The surgery was covered 100% and my doctor was amazing. He corrected my curve from 60* to 8*!! If you do decide to move forward with your surgery I would advise researching a GREAT doctor, even if it means travel. A surgery of this magnitude demands an amazing surgeon! And I promise there are Tricare participating providers, good luck!

Dori

SandyC
03-19-2007, 11:25 AM
I'm also TriCare.............FIGHT 'EM! The military does not do any type of scoli surgery and they MUST cover your doc/surgery/hosptial stay 100%. I had A/P in 2002 at UCSF. I had complcations, but would do it all over again to get the results that I have. Yes, I do still have some pain, but it is very well controlled and much better than per surgery. I was 52 at the time of surgery. The doc you work for may be an ortho, but he may not do a lot of adult scoli patients. Try getting an opinion from a doc that deals with adult scoli patients.

scooter950
03-19-2007, 01:32 PM
Hi Dori ! Hi Sandy! Thanksfor writing- it's reassuring to hear from other Tricare patients! I know all too well the referral game that I must go through, my PCM referred me to the local spine surgeon; he said he wouldn't touch me, and he didn't know who to refer me to. That ortho recommends fusion, he recommended fusion three years, the last time I saw him. But this time, I specifically asked him to refer me - and he drew a blank. He thought there was someone in Austin who worked on adult scoli...
So I returned to my civilian PCM and asked to be referred to LaGrone ( I figured it would be denied, and then I could use Shelokov as my "second" choice). Well LaGrone was denied, and Tricare changed the referral to a DO in a small town nearby. When I called that DO's office, I was told he does not operate on adult scoli pts. and they referred me back to my first ortho doc. What a run around! So I'm just trying to get an eval, and I am already playing the Tricare referral game. Now Tricare will tell me " you already have two referrals for two ortho doctors".... arghhh.

Anyway My husband seriously asked me if we needed to move so that I could receive good orthopedic care! I would love to go to Johns Hopkins, but that's a pipedream! They will never send me that far. And if I do travel, I'd prefer Dr Boachie- he impressed me! ( I saw the video).
anyway - thanks so much for your encouragement! Dorigirl, how do you feel now? and Shari- I'm close to your age, was it a horrible recovery? write when you get a chance--

scooter950
03-19-2007, 01:33 PM
sorry- I meant Sandy- I'm close to your age-
forgive my typo!

Sherie
03-19-2007, 02:31 PM
Hi SCOOTER,
Linda R. recommended Dr. Michael Lagrone in Amarillo when I asked about Texas scoli. doctors.

dorigirl
03-19-2007, 04:45 PM
Hi Jamie, thanks for asking about my recovery. I am doing very well at 6 months. I still have some pain and I tire easily, but as long as I rest often and I am careful about how much I do, I feel great! I am able to do pretty much anything I want. I am still numb and have a tingling sensation in my right leg, but other than that my symptoms are few. From what I understand, the numbness and tingling will fade with time.
When I think back to where I was just a few short months ago, I am amazed. Being in good physical and mental health before surgery is key. Ofcourse, finding the right adult scoliosis surgeon is the most important factor to a successful surgery. I am 35 years old and very happy that I made the decision to have my spine corrected. I wish you the best of luck in your search for a surgeon and the decision making process...it's not easy!

Dori

Shari
03-19-2007, 11:20 PM
Hi Jamie,

I am also close to your age, I'm 47 now and had my surgeries in May of 05. I did have a rough recovery, but I had a long fusion. I have had some trouble spots too.

Now it seems like my biggest problem is that the right rod is slightly longer than the left one, and it does create problems. Mostly when I am feeling stressed.

My Dr. said it would be an easy thing to do, to go in and trim it off, but the thought of having to go through another surgery is not what I want to do right now.

I used to be unable to get a good night's sleep because of the constant pain prior to surgery. I couldn't even lay down to relieve my pain, now I can.

Shari

shelley
03-21-2007, 09:37 AM
Hi Jamie,

I had spinal fusion and Harrington rods implanted in 1966 when I was 14. With an 87 degree primary thoracic curve at age 13, surgery was the only option. Except for the post-op recovery period, I have led a normal, pain free life. I am sure there are thousands of people who do not post on this forum who have had this surgery and are satisfied with their quality of life.

Best of luck in reaching your decision.

Shelley

dalmatica
04-02-2007, 06:35 AM
I'm curious as to why the doc you work with is advising you not to get it???

If your curves are bad enough and are steadily progressing at the usual 1 to 2 degrees a year, then go for it. I got back on my show horses a year later, ski, lift weights and lead a normal life except I can't do somersaults and cartwheels :p ! I have ran into a problem at this time but I would be in a lot worse shape had I not had it done 8 years ago at 40 yoa. Oh yea, I had a baby 16 months ago too!!!!! First one :D

brynnski
04-02-2007, 02:57 PM
Thanks to Shelley for your report of a painfree, normal life 40 years after surgery! I was longing to hear that people aren't all needing revision surgery a number of years after their first surgeries. I am meeting with my surgeon today to discuss this with him. My surgeries (anterior and posterior) are scheduled for the middle of May. I'm to be fused to L5, which I understand often means that my lowest vertebrae might degenerate in time. I really hope not! Also, my son had Harrington rods implanted in 1989 and he is fine so far. I hope he continues to be fine years from now.

Have you been careful when bending and lifting? Do you avoid certain kinds of exercises or sports? Can you identify anything you're especially doing right that has kept your discs above/below your fusion from degenerating? What levels are fused? I'm wondering of those with thoracic fusions do better over time than those with lumbar ones.

Thanks for everything,
Brynn

shelley
04-06-2007, 01:00 AM
Hi Brynn,

I am fused from T-3 to L-3. I wish I could definitively tell you how to keep the nonfused discs from degenerating, but I really don't know. My suggestions are to follow post op instructions as carefully as possible, keep your weight down, don't smoke, wear low heels and otherwise enjoy life. Instinctively, I still squat or kneel to pick things up from the floor. For years after surgery, I would pick up things from the floor with my toes (but only in the summer when I was wearing sandals).

For the past 6 years, I have been going to the gym three times a week. This decision was initially motivated by early menopause, rather than a specific back problem. I was surprised to find out that there were so many things I was able to do at the gym (e.g. stand on inverted half ball and do bicep curls with 15 lb. free weight in each hand). I work with a trainer who is able to address my concerns, such as improvement of balance and increasing strength, while minimizing possible injury. I am not a fan of yoga or pilates. I found that I was unable to do about 40% of each yoga class, because I cannot arch my back. I would not recommend using pilates apparatus for anyone who has had a spinal fusion. I tried it and it was scary.

Since my scoliosis started to develop when I was 6 years old, I was never athletically inclined. Over the years since surgery I have ice skated, jet skied, climbed a rock wall, and gone horse back riding (I guess miniature golf is not a sport).

If you have any specific questions, please let me know.

Hope this helps.

Shelley

Karen Ocker
04-06-2007, 09:06 AM
I would not recommend using pilates apparatus for anyone who has had a spinal fusion. I tried it and it was scary. shelly

I do use Pilates equipment and have a reformer at home AND I am fused T-4 to sacrum. :cool:

The difference here is that I work individually with a certified Pilates instructor who worked with me before my revision 4 1/2 years ago.
She has modified many exercises around my limitations(of coarse I cannot "roll like a ball") and I have greatly benefitted from it. We do a lot of hip strengthening, shoulder work as well as strengthening my abdomen isometrically. Under no circumstances would I do this at a gym or try tapes. :eek:

dianebetts
04-07-2007, 12:55 AM
Dr. Shelokov did my surgery and took Tricare for me... at that time, they weren't in the habit of accepting it. I begged and he called me that night. I just had to prove that no one in SA did this. IT IS IMPORTANT TO CLARIFY W/ TRICARE THAT MOST SCOLI DOCS DON'T "DO" ADULTS (esp. in the case of kyphosis which I had).

Dr. Shelokov's staff will help you. I didn't have to worry about anything. In fact, at that time, Baylor Plano told me the day before that they wouldn't take Tricare and I'd have to go to another hospital. Doc Shelokov jumped on them: he was madder than we were! He got them to back peddle and I never saw a single bill. He says he does enough surgeries there for them to accommodate ALL of his patients. I fell in love with him then and there!!! ;-)

Another point to mention: you might want to switch to tricare standard if you aren't the actual active military member. There is a VERY small co-pay and the catastrophic cap is only 1K. The reason is that you don't EVER need referrals. I just spent 2 hours in their offices this week and that is what I learned and switched to standard myself. That way, I can go back to Shelokov for any revisions I might need.
Email me w/ any other questions.
Diane

shelley
04-08-2007, 10:05 PM
Hi Karen,

I certainly respect your opinion concerning pilates. I tried a private lesson with one of the pilates instructors at my gym. My problem with the pilates equipment that I tried was that I felt as if the machines were trying to further straighten my already fused spine. As a result, this made me feel like the fusion and instrumentation were going to crack (even if this fear was unfounded). I found myself trying to compensate by using every available muscle to offset the straightening pressure on my spine. That is why I said that pilates were scary. Also, I had no experience with pilates prior to my surgery.
I find that I am more comfortable working with a trainer at the gym. We have developed a program of cardio, resistance, balance and stretching exercises.
We are all working toward the same goals. Each person needs to find the best way to achieve them.

Shelley

Theresa
04-08-2007, 11:17 PM
Hi Jamie,

Where abouts in Texas are you? I'm in Houston. I will be having a revision surgery with Dr. LaGrone on May 21st. I had an appointment with him this past December and my husband and I really felt comfortable with him. How's it going with your insurance? I remember when my husband was in the service and we had to use "Champus" insurance when I had my daughter because they didn't have an Ob doctor on base at Tinker AFB in Oklahoma. We worried the whole time not really knowing what to expect from them.

dalmatica
04-09-2007, 08:31 AM
I am a clinical exercise physiologist and since one year post-op, 8 years ago, I went back to lifting heavy weights without a problem. My doctor told me to do anything that I wanted to so I have. I just don't do somersaults and cartwheels :D :p !

shelley
04-11-2007, 03:58 PM
Hi Dalmatica,

I was wondering whether you could clarify "lifting heavy weights?" Do you do a traditional bench press or do you use free weights or a bicep bar for bicep curls, shoulder presses, etc. Also, everyone's idea of heavy is vastly different. How much weight are you talking about? I suspect you will be an inspiration to us all.

Shelley

tramey
04-12-2007, 04:13 PM
Hi!
I'm Theresa, I had my surgery in 1983 at the age of 13. They tried to use the milwalkie brace for 2 years, but my spine kept getting progressively worse. I dont remember many details about the surgery except that was pretty much the only choice we had at the time. My spine was like an "S" and they used the Harrington Rod. It is fused to my spine. I know my scar is from my shoulder blades down to just above the tail bone. They did a bone graft from my right hip to help. I still have a 15% curve, but considering what it was, that is pretty darn good. My surgeon was Dr. Tupper in Seattle, WA. I am happily married and have had 3 children since. I never had any pain until after my last was born. Now I get lower back pain every once in awhile. It has not stopped me in doing anything that I have wanted to do. I was able to pass the physical for a volunteer fire department. I was a certified scuba diver. I know I have probably drifted from where the original post was going, but there are some of us out there, (as before mentioned) who haven't had any or much pain. There were times where it was hard to deal with, but thinking back to it all and considering the what if's, I wouldn't change the decisions that were made.

dalmatica
04-14-2007, 06:31 AM
Well, first off I ride the stationary bike for around 90 minutes or until I hit 600 calories, whichever comes first. The only way I can do this is with good reading material. I wouldn't last five minutes because of boredom even with the TV on if not for reading. Then I do bicep curls (20lb dumbbells at the moment), military press with dumbells at 17 lbs or I'll switch to uprite rows or lateral raises. I do either wide grip pull downs at 125lbs or bent-over db rows for my back. I'll either bench or do peck-deck for chest, tricep pushdowns or french curls for tri's, shrugs at 150 lbs, used to be heavier but since my rods are broke, I backed off. Some days I do stiff-leg dead lifts with 10lbs for my low back and to stretch my hamstrings. Usually I only do one set since this is a maintainance program. If I were building muscle, I would do multiple sets and a split routine. I did all this before my surgery and more of it. Afterward, I stretch for about 10 minutes. My doctor knows all about this and it has kept me in great shape. Remember, I had my first baby 17 months ago today, just one month shy of my 47th birthday.

I don't usually pity myself, but lately with the news of the broken rods, I have been down. I'm getting them fixed on the 30th and that will put the kabosh on lifting for several months but I do plan on getting back on the bike, asap.

It's all mental folks. I live with daily pain and some days lots of it but I promised myself a long time ago that I am responsible for my health and I plan on making the most of it.