Need Answers!

[Radiogirl]

MIKE! WAIT! Listen to me....I consulted with your same surgeon, Dr. Orr and he told me to wait also!....Bull crap! I'm not waiting until I'm in tears and in a wheel chair and lose all quality of life! He is not an Adult Scoliosis specialist. He operates on adults for herneated discs (he did that to my ex-husband, actually). He's good for that...but not for Adult Scoli! So....I promptly set an appt. with Dr. Lenke in St. Louis. He specializes in hard cases, and in adults. You really need to go see him. I know it's not as easy as getting in a car and driving to the drs., but this is your back...and it's for life!!! I also consulted with a dr. from University, Dr. Christopher Feury, and a spine specialist in Akron, Dr. Scot Miller. They all said "go see Lenke"! Except Orr...he said "Wait til you really can't stand it, then I'll do it". Ha! Forget that....don't need him! Please...go consult with Lenke!!!

Laura

[Radiogirl]

Oh, one other thing about Orr. He had the degrees measured wrong on the xrays he did. Lenke had a different (higher) degree. Just FYI.

[Doodles]

Hi--
Even in my 50's I was told I'd probably be OK without surgery. I was followed by doctors in Iowa City for years who did tons of kids--way over 300 a year. When I asked about people my age they said they did about 10 a year. They didn't encourage me at all and now I think it was more they didn't know how to deal with mine. As mine grew much worse in the last 2-3 years I knew I had to do something despite adamantly opposing doing surgery. I saw Shelokov and set up surgery time and then got cold feet and did a second opinion with Dr. Lenke and felt comfortable then. I had mine March 30. I definitely have flexibility issues but can do most of what I want.
Also about golfing--no problem for me I was horrible. But I talked to several of Shelokov's patients and one lady was actually a pro women's golfer if I recall and went back to it in some ways. This would have been summer 08 when I talked with her. I think she may have had a web-site so I think it's OK to give her name: Kathy Farrer. Might want to check that out. Can't believe I found that info!

Linda--
Can you explain the difference between pelvis and sacrum. I have the giant bolts on both sides--does that just mean pelvis? Never was sure on the difference. Janet

[JenniferG]

My surgeon encouraged me to have the surgery sooner rather than later. He told me I should have the surgery within the next 12 months if possible. I had it 9 months later. I asked him what would happen if I put it off. He stated worsening curve, worsening pain, and delaying the surgery would mean a longer recovery and the added risks of surgery in older age. He said I would still most likely be able to have the surgery in ten years, but for the above reasons, it was better not to put it off.

He told me my curve would not impact my lungs or heart but it would definitely impact my every day life. That was already starting to happen.

[dolores a]

Janet, thanks for asking that question about the difference between sacrum and pelvis. As you can see, I was fused anterior to S1 (which I assume is Sacrum) and posterior to pelvis. But either way, it's way down. Can't do alot of things the way I did before surgery, but I certainly adjusted pretty well. Shoe Laces and pedicures are pretty difficult, but I deal with it. If my husband is around, he'll still help me tie my shoes, especially if I'm running late for work. I can't wait for the warmer weather, I want to try riding my bike again, anywone have problems with this after surgery.

[loves to skate]

Hi--

Linda--
Can you explain the difference between pelvis and sacrum. I have the giant bolts on both sides--does that just mean pelvis? Never was sure on the difference. Janet

Janet, Hope you don't mind if I jump in here. The sacrum is the flat bone in the back where the spine is attached at L5-S1, also known as the sacrovertebral joint. The sacrum is a series of naturally fused vertebrae with the coccyx at the bottom. The pelvis is the large bone that you can feel just below your waist that is attached to the sacrum on either side of your back at the sacroiliac joints. Your hip joints are attached to your pelvis. Usually if you are fused to the sacrum, you will have screws in your sacrum and your pelvis. The really long screws are in your pelvis. I hope this helps. Sally

[osumike]

MIKE! WAIT! Listen to me....I consulted with your same surgeon, Dr. Orr and he told me to wait also!....Bull crap! I'm not waiting until I'm in tears and in a wheel chair and lose all quality of life! He is not an Adult Scoliosis specialist. He operates on adults for herneated discs (he did that to my ex-husband, actually). He's good for that...but not for Adult Scoli! So....I promptly set an appt. with Dr. Lenke in St. Louis. He specializes in hard cases, and in adults. You really need to go see him. I know it's not as easy as getting in a car and driving to the drs., but this is your back...and it's for life!!! I also consulted with a dr. from University, Dr. Christopher Feury, and a spine specialist in Akron, Dr. Scot Miller. They all said "go see Lenke"! Except Orr...he said "Wait til you really can't stand it, then I'll do it". Ha! Forget that....don't need him! Please...go consult with Lenke!!!

Laura

You just completely convinced me to call Dr. Lenke's office. I djust did, I got registered with the lady that answered the phone, but his medical assistant was out for the day. Ill call 1st thing in the morning.\

One more thing, after Orr said all that to me, I told him I disagree with him and would like another opinion. Then I said Dr. Lenke's name to him, and he said that "absolutely he would give a reccomendation" to Lenke for me. So thats cool.

Laura, how long was it between the 1st consultation with Dr Lenke and the surgery date? Im really just hoping I dont have to wait a real long time. Im ready for it now!

[rich1752]

my doctor wanted to fuse me to the pelvis. He wanted to fuse me from T9 to pelvis. We spoke on the phone a couple of times before surgery and I told him my concerns. I am 38 and feel being fused to pelvis, would be horrible for the rest of my life. I told him that he is the doctor and knows what is best, but I really didn't want S-1. We made an agreement about going in to surgery and while exploring he would check the disc and see if he could skip it. He did and I was so happy afterwards...

[osumike]

Yea Rich- that would be great if it didnt have to happen that way. If I remember right, Dr Orr said that a disk had shifted somewhere down there, so if I wasnt fused to the pelvis, it would put too much pressure on it, and cause alot of pain. At least I think thats what he said. My head was kind of spinning after he said he thought I should wait on surgery because "I dont act like its bad enough yet." Rediculous. I really need to get the written report so I have in writing what is going on.

[jrnyc]

disc problems usually necessitate going lower, it seems...that is why i need fusion to sacrum with "bilateral pelvic fixation".....my discs are REALLy bad...they cause alot of my pain, besides the scoli....

i see Dr Anand in CA next week...dont know that he can do anything different or that it would make a difference for me...but we will see...i need to hear it for myself...

i was told that Dr Lenke has a very long waiting list for surgery....

best of luck, Mike

jess

[Doodles]

Sally--Thanks for the info. I think doctors tend to use it interchangeably. If you are fused to S1 or S2 you are just anchored in the pelvis--so it's sort of both. I think I get it!
By the way, it took me 6 months to get in for surgery with Dr. Lenke after initial appt. Janet

[titaniumed]

Mike

I would say holy crap describes it well. I like using man-o-man, it explains so much more! LOL

I agree on the Dr Lenke consult. Or go to New York. They are roughly 500 mile drives, not too bad.

I would recommend ordering the books that are available through NSF. In fact at this stage, its almost mandatory reading for you. Read all the books, I'm sure you will find it interesting.

Please don't make the most important decision of your life, based on if I can ski, or if someone else can play golf. Its nice to know that someone you know made it through with flying colors, but this subject of major surgery is so much more............

If you are going to "interview" your surgeon, you need to know all the questions to ask, since they cannot cover all aspects and complications that are involved, in a 1 hour consultation. I suspect that they might want to be safe and fuse to the pelvis, especially with your 7 foot frame. You will have quite a bit more force, "downstairs" if you know what I mean. Usually, they do get a better fusion with an anterior using BMP, like they did with me.

Surgeons specialize in certain things. Sometimes they might do the kids, sometimes they do adults. Its actually their choice on which cases they want to take. Dr Orr might not feel totally comfortable doing your surgery. If I didn't feel comfortable doing it, that would be something if I recommended someone else, and things didn't go so well......

Just some thoughts.

If you want to talk to me, e-mail me at titaniumed@hotmail.com and I will talk to you on the phone.

Oh btw, welcome to the club.

I am fused to the pelvis with huge anchors. I've attached my saggital view for you.
Ed

[sheri66]

I would like to add that I am fused to pelvis and was told I could not do alot of things but I can put my own socks on tie my own shoes shave my legs.I just started PT and love it.I am a little weaker with my left leg but I know it will get stronger.I am so glad I had the surgery.My pain from before surgery is gone.I am blessed to have found a excellent surgeon.

[osumike]

well I was able to talk with Dr. Lenkes nurse today. She said he is scheduling about 2 months out, and scheduling surgerys about a YEAR out, unless he feels its necessary to do it sooner. Si I have cleveland clinis faxing over all my info, and in the mean time, Im thinking I shoud try to set up at least 1 more consultation. From what Im understanding, its going to be a difficult surgery on me. Any other doctors come to mind that would be good to see?

[jrnyc]

would you go to NYC....if so, there are several excellent surgeons there...

jess