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Thread: Looking for some feedback!

  1. #1
    Join Date
    Oct 2005
    Location
    CT
    Posts
    4

    Exclamation Looking for some feedback!

    LONG STORY!! Hello I'm 50 years young and need some feedback from others with scoliosis please! I have a 40 degree lumbar curve, spondyolisis S1, L5, a disc bulge L3 or L2 with a non fused S1L5 fusion in April 2003.

    I'm getting ready to have another try at S1/L5 fusion - in the process of getting ready for this my doctor wanted me to go for a second opinion who said yes this needs to happen but you should also consider fixing the lumbar scoliosis (40degree curve). He sent me to a brand new doctor in the area who's fresh out of school and is a 'scoliosis specialist' wanna be. He suggested hardward from T10 down to my pelvis.

    When I went back to my original dr, he said this is not a good idea. He said we should only be fixing the S1/L5 and include L4 this time. This time he will try the pins again. Last time he tried but said it was too unstable and he felt the hardward would not stick - so just fused with bone from my hip. Asking why he felt it would work this time - he said he's going to include L4 - said there are new types of pins available and if it's still soft he'd use my own bones again but this time instead of wearing a brace he'd put me in a cast.

    MY main question is how many of you out there had a 40 degree curve fixed? It seems to me you all have much larger curves and have problems with your hardware!

    My pain is in my left leg, down the leg into the ankle foot and two toes. When you look at me you can not see any curve of my spine. My head is in line with my tailbone. I do have a little shortness of breath and have muscle spasms in my upper back but is relieved with massage.

    I am overweight in my belly and breast area. This I hope to take care of once the pain from lower back, leg etc is taken care of. So that I will be able to really do some good distance power walking and some good hiking.

    Dr. Brown's opinion is that if the curve is fixed then I will be out of line with my head tipping over to the right.

    His second concern is if the hardware does not take and or breaks you've got that much more of an area that needs to be repaired. He feels we should just watch the curve and see if it continues to progress then perhaps rethink straightening but thinks it would be unlikely!

    I do realize this site if for people who have problems with their surgeries and the ones who've had successful surgeries are not visiting these types of sites they are living painfree productive lives. But you are the people I need to get some feedback from.

    I need to know if you think a 40 degree curve is worth the loss of flexiblity etc.

    I want to live another 50 years but I want to be as flexible and pain free as possible - I want to still be able to work in my organic garden - go hiking and be able to pick up and run around and go sledding with my nephews and someday grandchildren. I'm an outdoors person who loves hiking, boating and camping - I'd like to ski again someday but that's not as important as the above.....

    sorry for dragging this out but hoping to give enough details to you all to understand my situation. Please let me know if you need to know any other details.....

    Looking forward to your comments!

  2. #2
    Join Date
    Sep 2005
    Posts
    97
    My first reaction would be to not take the opinion of the Wanna-Be, but to consider getting another opinion from a more experienced Scoliosis (Revision) specialist!!

    If that is not possible - I'd go with the more conservative approach!! But, thats just me!!

  3. #3
    Join Date
    Oct 2005
    Location
    CT
    Posts
    4

    Thumbs up Thanks for your Reply Ken

    Appreciate your reponse. After reading through all the different posted messages in the forum, I'm going to stick with my original doctor and have the fusion for the spond and pray my scoloisis does not progress.

    Thanks for taking the time to reply.

  4. #4
    Join Date
    Sep 2003
    Location
    NJ
    Posts
    1,291

    Exclamation adult scoliosis

    "I'm going to stick with my original doctor and have the fusion for the spond and pray my scoloisis does not progress."

    What if it does progress? Do you want to go through it all over again?

    It IS possible that your scoliosis is progressing; in adults progression1-3 degrees a year are not uncommon. Do the math and you'll know what I mean. It happened to me.


    With scoliosis the WHOLE spine must be taken into account for balance.

    I BEG you to see a qualified adult scoliosis specialist with lots of experience. It is cheaper and safer in the long run. It may save you lots of pain and disability.

    Karen
    Original scoliosis surgery 1956 T-4 to L-2 ~100 degree thoracic (triple)curves at age 14. NO hardware-lost correction.
    Anterior/posterior revision T-4 to Sacrum in 2002, age 60, by Dr. Boachie-Adjei @Hospital for Special Surgery, NY = 50% correction

  5. #5
    Join Date
    Oct 2005
    Location
    Kansas
    Posts
    22
    Everyones case is different, heres my story:

    Found my scoliosis in Kindergarten, watched it for 2 years, it progressed to 56 degree Lumbar curve and 69 degree thoracic curve. At age 12 had horizon cd rods put in (T6 to L3) and it lowered my curve to 22 degree lumbar and 29 degree thoracic. No cast no brace after surgery. Returned to school after 18 days and normal activity after 1 year. I did absolutely every thing that other kids did except a back bend.
    I've had 2 children and up until 1 year ago I would call my life normal. Yeah, I would get the occasional achiness when it was gonna rain, and some tension headaches but no real problems to speak of.
    Until December of 2004. I started getting these blinding headaches that would not stop. I tried the pain pills that I would take for my tension headaches which would stop them after one dose, and they didn't work. So I startd to going to doctors, first my DO who tried every migrane medicine known to man, they didn't work, I had pain shots, they didn't work, I tried percocet and flexeril and they dulled it a little but didn't take it away. So I went to another DO, he said I have arthritis and nothing can be done, I would just have to live with these headaches for the rest of my life. I didn't agree with that so I went and saw an Orthapedic surgeon, he finally found the problem the curve in the top of my back ahd progressed to 42 degrees and this is why I was getting the headaches.
    He added on to my original rods and fused up 3 more vertebrae. So now I'm fused from T3 to L6. But the headaches haven't stopped and now I have constant pain and muscle spasms to go along with it. I just went to see my second orthapedic surgeon and he wants to run a few tests but he is thinking that the new hardware may need to come out. I'm a very skinny person and there is just not enough room in there for the new rods. They are crowding all my muscles and causing alot of pain. He also noticed that I have a new curve in my cervical spine that was not there 2 years ago. It measures 32 degrees. So I have no clue what we are gonna do about that yet. Fusion of these vertebrae will totally eliminate my ability to move my neck.
    All I can say to you is get a second and a third and a fourth opinion before you have any more surgery, and ask them how many more you're gonna need in the future.

    Georgian

  6. #6
    Join Date
    Oct 2005
    Location
    CT
    Posts
    4

    Karen & Georgian

    Thank you both for your reply's - on Friday I actually went to a chiropractor I had seen almost 10 years ago - hoping he still had x-rays from back then. He's going to look but said they usually don't keep files over 7 years and x-rays only have a 3 yr retention schedule. He remembered me but could not be certain of the degree of my curve. He looked at my new x-rays and is going to talk with a scoliosis specialist get some feedback and possible send me there. He did recommend not getting the scolio surgery in CT said either NY or Boston where they are more experience and specialised.

    At first just talking he didn't think I needed to concider the scolio surgery but after looking at the x-rays he said he thought it wouldn't be such a bad idea to get another specialists opionion. He thinks watching is what will be recommended - said the spurs on the slippage in L2 area is there but is small - showing signs of some wear & tear but he's seen much worse.

    So I'm going to wait until he gets the feedback and a recommendation and take it from there. In the mean time he found a nice sized kidney stone I need to take care of before it starts moving on out and causing pain and I'm keeping my spondolysis fusion surgery date for the 13th of December.

    Again, thanks so much for your replies. VERY MUCH APPRECIATED!!

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