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osumike
01-19-2010, 04:36 PM
Went to see Dr. Orr today. I was told IF he were to operate on me, it would require a fusion from T3- Pelvis. Holy crap. He acts like he doesnt want me to do it yet because I dont act like its "bad enough" yet. Basically said im only 30, and the way this would change my life should wait as long as possible. Does this make sense? My curves are DEFINATELY progressing, so I guess he's leaving the decision up to me. Said he didnt think I'd be able to go back to work at my current job, that if I can continue taking "reasonable amounts" of pain meds, (10 mg. percosets), that maybe I should think about holding off.

Also, the MRI showed that I have 2 cysts somewhere around my pelvis. Anyone else? That if I were to say, fall and burst one of them, it would be tremendous pain for a few weeks. I know, I dont exactly have all the terminology here, but when I get the written report Ill update this.

I need to hear from those of you that have had such long fusions. What can and can't you still do? Titanium Ed, Im pretty sure you can still ski, right? Theres no way I can put this off. Im 30. This daily pain has been dealt with for 15 years now.

LindaRacine
01-19-2010, 04:52 PM
Went to see Dr. Orr today. I was told IF he were to operate on me, it would require a fusion from T3- Pelvis. Holy crap. He acts like he doesnt want me to do it yet because I dont act like its "bad enough" yet. Basically said im only 30, and the way this would change my life should wait as long as possible. Does this make sense? My curves are DEFINATELY progressing, so I guess he's leaving the decision up to me. Said he didnt think I'd be able to go back to work at my current job, that if I can continue taking "reasonable amounts" of pain meds, (10 mg. percosets), that maybe I should think about holding off.

Also, the MRI showed that I have 2 cysts somewhere around my pelvis. Anyone else? That if I were to say, fall and burst one of them, it would be tremendous pain for a few weeks. I know, I dont exactly have all the terminology here, but when I get the written report Ill update this.

I need to hear from those of you that have had such long fusions. What can and can't you still do? Titanium Ed, Im pretty sure you can still ski, right? Theres no way I can put this off. Im 30. This daily pain has been dealt with for 15 years now.
Hi Mike...

Since there's already the need to fuse to the pelvis, it's pretty common to encourage the patient to put it off as long as possible. Being fused to the sacrum will definitely limit your flexibility. I can't remember if Ed is fused to the sacrum or pelvis, but I'd definitely encourage others who have long fusions to the sacrum or pelvis to chime in.

Regards,
Linda

JenniferG
01-19-2010, 05:17 PM
Mike, I'm fused to the pelvis and frankly I don't "get" why doctors seem to want to put it off as long as possible. It really isn't a big deal. Flexibility is affected, but there seems little I can't do and other things I do differently. I don't look like a tin soldier, I can still bend but I do it with a straight back, using my hips and knees.

To me the trade off for any loss of flexibility is easy: a pain-free existence. I'd have given up much more to have that!

Ask any questions you want.

Jimbo
01-19-2010, 05:24 PM
65* thoracic/ 55* lumbar progressing with pain and he sais to wait!

I would consult another surgeon.

MitoMom
01-19-2010, 05:34 PM
Hi

As Jimbo already said, see another surgeon. It's not about shopping for a dr who says surgery or one who says no surgery. Right now, it sounds like you are questioning this dr. You don't trust him. And if there was ever a need to trust your surgeon or dr, this is it. Because even if he were to operate on you, you will be wondering about other things he says.

Also, make sure you see an orthopedic dr whose business is adult scoliosis not just a general orthoped who fixes broken bones, etc. I believe the NSF home page can take you to a page where you can find scoliosis drs in your area.

Did he suggest therapy? It may not reduce the curves but it will strengthen your core body muscles and that may give you some pain relief.

MitoMom
01-19-2010, 05:39 PM
About those cysts...

Did he say where they are? On the pelvis? Part of internal organs? What did the MRI report specifically call them?

Sorry to get picky but obviously if these cysts are part of internal organs, you need to see someone related to that body system not the orthopedic dr. Did he recommend that?

lapieper
01-19-2010, 06:01 PM
I was fused T2:S2 in Apr 08. The only thing I can not do is stretch, arching my back. I do what I call elongating myself, where I just reach up as far as I can, no arching. And I'm 56 now. I sometimes have to laugh at myself when I'm out shopping, trying on shoes. I feel very self-conscious if I have to ask for help. Outside of that, I just use my knees a lot to squat to pick something off the ground. It becomes an automatic movement without even thinking about it. Hope this helps!

debbei
01-19-2010, 06:50 PM
I was fused T2:S2 in Apr 08. The only thing I can not do is stretch, arching my back. I do what I call elongating myself, where I just reach up as far as I can, no arching. And I'm 56 now. I sometimes have to laugh at myself when I'm out shopping, trying on shoes. I feel very self-conscious if I have to ask for help. Outside of that, I just use my knees a lot to squat to pick something off the ground. It becomes an automatic movement without even thinking about it. Hope this helps!

I do that elongating thing too, reaching up in the morning, and it's the 'new way' that I stretch my back. It feels so good. Until 3-4 months ago, I thought I'd never be able to do this again.

Mike,
I'm fused T3-L3, and like Jen said, I don't find anything that I want to do that I can't. I might have to do said thing in a slightly different way. I agree with the others that you should see several other surgeons for different opinions.

osumike
01-19-2010, 07:17 PM
What do you think the chances are to golf after a fusion like that? I love to golf, but man, I guess I would trade that too to be out of so much pain.

And yea, I think I may be done seeing surgeons. From what Im understanding, Im going to be a fairly complex case to handle. I think Dr. Orr is one of the best in the country from what Ive gathered. He did say say he would refer me to Dr. Lenke in St. Louis if I wanted to see him. I trust and respect Dr. Orr's opinion so WHEN I decide to go ahead with it, its going to be him.

JenniferG
01-19-2010, 08:35 PM
I wonder if other fused golfers will come on and advise...I have not played golf since surgery but I just made a golf "swing" and there was no pain or stiffness, but a definite loss of strength. So I would suggest regarding golf, it might be a matter of time to regain strength and possibly learning a slightly different swing. But you can do it Mike!

osumike
01-19-2010, 08:42 PM
Yea. This forum is so freakin awesome. The insight and encouragement and experience is just great. I know my surgeon is just doing his job by telling me I should try to hold off on such an extensive surgery, but I know its something I really have to do.

I go to meet with my GP this Friday to discuss things I guess. Dr. Orr said he wouldnt be able to schedule "my" surgery until June. Im starting to think I'd better get my name on the list before I have to wait even longer.

JenM
01-19-2010, 09:24 PM
Hi Mike,

I am about the same age as you (I'm 31) and have almost the same curves as you. I can totally relate to the amount of pain you are going through. That's why I finally made the decision to go through with this surgery. If we are only 30 now, I can't even imagine the pain 20 years from now! Anyway, I have almost the same curves as you (55 thoracic and 58 lumbar) and my surgeon is only fusing me from T4-L3. He doesn't want to fuse me down to the sacrum, even though I have moderate degeneration with my L4, L5 vertebrae. He is one of the top surgeons in the world too from what I hear. I know every case is different but I was just wondering what are some of the reasons that your doctor said you needed to be fused to the pelvis? Do you have really bad degeneration in your lumbar spine that showed up in the MRI?

Best of luck to you,
JenM

jrnyc
01-19-2010, 10:35 PM
Hi Mike
i need fusion to pelvis too...am putting it off..but i shouldnt..i am 61 years old...my scoli took a long & winding road, as it were...just got really painful about 5 years ago after i herniated discs...then all heck broke loose! before that , i tolerated the pain well & went to gym 3-4 times a week! worked 2 jobs, too!

i am going to see dr anand in CA next week...he can supposedly do less invasive on everyone, or so he thinks...i have alot of doubts, as a few of the best surgeons in nyc, including dr boachie, told me "No", minimal invasive is not possible for me...i am 40 degree thoracic & 61 lumbar, with rotation, spinal stenosis, degenerative disc disease & arthritis.....they are talking ignore upper curve, as the pain is controlled with botox shots i get every 3-4 months...also...and this is important...i had to RETIRE, the pain got so bad...but you are obviously too young for that...so you need to be able to return to work....i cannot work anymore, much to my sadness...i loved my jobs....

i think you once told me that pain management shots arent possible for you, for some reason....so, if that is true, i could see how surgery would be the only choice...i dont blame you for hesitating, but if the pain i so bad...what else can you do? i would recommend seeing another surgeon, even though you say you want dr orr...maybe you should just consult with dr lenke? i am consulting with dr anand, but he wont do the surgery even if i like him, as he does not take my insurance! i will probably go with dr lonner in nyc...i like him alot! i fear dr anand cannot do minimal invasive on me...no matter what he thinks! have to go investigate for myself to be satisfied.....i am told i need T11-S1 & L4-sacrum, with bilateral pelvic fixation...

where are the cysts? never heard of that before in the spine...?

jess

Vali
01-20-2010, 08:34 AM
I don't understand why they wait either. With all the pain i was experiencing pre-op especially in the last three weeks, I would have climbed the walls, if my surgeon said we need to wait. Yeah, sure, he told me i couldn't play netball anymore, but, hey, iwas willing to trade netball for no pain. Good luck!

jrnyc
01-20-2010, 10:47 AM
there is a big difference being fused to L3 with starting the fusion at L4...mine would be like Val's...T11-S1 & L4-sacrum....i have hesitated because there is no guarantee that i would not have pain after healing...even some new pains that werent there before!

that is why i wait...the pain relief is the only reason that i would try the surgery...i am not afraid of heart/lung damage, as my upper curve would not be fused...it is now 40 & barely increasing at all...it is the lumbar that is causing most pain & problems....the disc degeneration is bad in the lower lumbar...THAT necessitates fusion to pelvis...i wouldnt be considering it if the doctor didnt state it was needed...all the top surgeons i consulted with in nyc said the same thing, including dr boachie, who is supposed to be one of the best

jess

Radiogirl
01-20-2010, 03:15 PM
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
01-20-2010, 03:17 PM
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
01-20-2010, 03:18 PM
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
01-20-2010, 03:32 PM
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
01-20-2010, 03:57 PM
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
01-20-2010, 04:02 PM
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
01-20-2010, 04:57 PM
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
01-20-2010, 05:48 PM
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
01-20-2010, 05:55 PM
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
01-20-2010, 08:42 PM
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
01-20-2010, 10:02 PM
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
01-20-2010, 10:56 PM
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
01-21-2010, 01:04 AM
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
01-21-2010, 05:20 PM
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
01-21-2010, 11:37 PM
would you go to NYC....if so, there are several excellent surgeons there...

jess

Shari
01-21-2010, 11:43 PM
I am fused from T-1 to L-5 at the age of 45 in May of 05, ant/post.

I can say that I can still golf. I have to use different clubs, to get the distance I used to be able to get.

It took me a couple of years before I actually got on a course, but only a few months before I picked up a club to see if I could still swing. I could still swing w/o strength at first. It's different now!!!

In case you are wondering,
Shari

osumike
01-22-2010, 04:30 AM
would you go to NYC....if so, there are several excellent surgeons there...

jess
Absolutely. Im pretty much willing to go anywhere.

I am fused from T-1 to L-5 at the age of 45 in May of 05, ant/post.

I can say that I can still golf. I have to use different clubs, to get the distance I used to be able to get.

It took me a couple of years before I actually got on a course, but only a few months before I picked up a club to see if I could still swing. I could still swing w/o strength at first. It's different now!!!

In case you are wondering,
Shari
O yea, Im wondering. I really do love playing golf, but like I said before, Id trade it for a new back any day.

jrnyc
01-22-2010, 05:18 AM
Hi Mike....
in NYC....Dr Lonner is an excellent scoli surgeon....you could also call Dr Neuwirth's office for an appointment....then there is Dr Boachie, who is one of the best anywhere, but i dont think he takes insurance....i think it would be smart to try to schedule a consultation with at least one of those 3

jess

Radiogirl
01-22-2010, 02:01 PM
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!

Mike, I hope you have been able to schedule a consult with Lenke by now. I am so glad you are not taking Orr's advice! I really wish I would have done my surgery years ago...to heal easier. I'm 49, but am in good shape so should heal quick I hope! My original meeting with Lenke was last June. My surgery is coming up...March 31st. I think he's well worth waiting for. He's "The Man" and many, including Orr have studied with him and attended his lectures. Keep me posted!
Laura

Radiogirl
01-22-2010, 02:06 PM
Hey Mike, I just saw your post about your consult scheduled. Don't worry...they originall told me I would have to wait one year for surgery, but actually moved it up. They do have people back out and cancel, so what I did, was call them once a month to see if anything opened up..and sure enough, they got me in a couple months early. It's worth it! :)
Laura

osumike
01-22-2010, 05:05 PM
Ya actually I havent got a consultation scheduled with him yet. Cleveland just faxed everything over there this morning. Hopefully Ill hear something by next week.

About Lenkes lectures and seminars, Dr. Orr told me that Dr. Lenke is coming to Cleveland I think next week maybe, for a scoliosis seminar. Man, too bad I couldnt just meet with Lenke while hes here.

Radiogirl
01-22-2010, 10:59 PM
Wow!!! I would LOVE to sit in on that seminar!!! I'm sure they would never let a patient sit in...but they should! They could use us as demonstrations! :) Stay on them about getting your consultation scheduled, Mike!...you won't be sorry!

Vali
01-24-2010, 01:16 AM
I'm with you on that one Radiogirl. In my case they could show before and after!

osumike
01-26-2010, 09:55 PM
Well....I received a call from Dr. Lenkes nurse this afternoon. After talking for a while, she said the 1st available new patient opening wouldnt be until May. After that, he is scheduling surgery for about a year out. A YEAR. Im not sure I can put up with the pain for that long. It seems to get worse by the day.

So then she transfered me to the nurse of Dr. Keith Bridwell. I set up a consultation for Feb. 8th. I have never heard of him, but she told me he is a world renowned scoliosis surgeon, and Dr. Lenke apparently trained under him. Ive since read a few things about him online, and its looking really good.

Do any of you know or have had surgery by him?

osumike
01-27-2010, 09:01 PM
I just searched some old threads on here about a Dr. Rohmiller at the Cincinnati Spine Institute...Anyone have any experience with him? Or how about a scoliosis surgeon in Indianapolis maybe?

txmarinemom
01-27-2010, 10:12 PM
osumike,

Bridwell is an excellent surgeon - and definitely a good option for an alternative consult.

osumike
01-30-2010, 06:02 AM
I FINALLY figured out how so resize these xrays to put on here...

Vali
01-30-2010, 06:14 AM
Just looking at your x-rays, brought back memories of the pain i was experiencing pre-op. Are you on any pain meds? I agree with you regarding the pain getting worse each day. Daily i thought to myself - surely this doesn't get any worse! WRONG.... for me it did.
I spent much of the week before surgery either lying down in my bed or on the couch! Hope you have some help with that pain. Take it easy and good luck with your appt.

osumike
01-30-2010, 06:51 AM
Just looking at your x-rays, brought back memories of the pain i was experiencing pre-op. Are you on any pain meds? I agree with you regarding the pain getting worse each day. Daily i thought to myself - surely this doesn't get any worse! WRONG.... for me it did.
I spent much of the week before surgery either lying down in my bed or on the couch! Hope you have some help with that pain. Take it easy and good luck with your appt.

Yep. 10mg. percoset and 800mg. skelaxin. It helps but I find myself taking more than prescribed some days because I hurt so bad. Not fun.

jrnyc
01-30-2010, 08:30 AM
hey mike
that thoracic curve looks wicked! really bad...you have my sympathy on the pain!

i just quit oxycontin this week..day before i flew to CA to see dr anand...it wasnt killing the pain enuf, & it had me so tired all the time..physically exhausted, not sleepy...so i couldnt get out of bed til 3 in the afternoon....no way to live! now i just take the generic norco...10 mg...i need over 4 a day, but it works better than the 30 mg oxy i took twice a day before...it is just alot of tylenol in it..that is why i switched to oxy....cant believe that up til not quite 3 yrs ago, i worked 2 stressful jobs in manhattan! 7:30 a.m. to 3:20 p.m., & then 4 p.m. to 8:30 p.m......i used the distraction of work to help distract from the pain..but wow, how it hurt whenever i sat down!! :rolleyes:

i hope you find the right doctor for the job & get this taken care of when the time works out for you! i know how it is living with chronic constant unrelenting pain!

do you know if you have disc degeneration or herniated discs...., or is it all from the scoli?

best regards
jess

naptown78
01-30-2010, 09:39 PM
Hi Mike
I just noticed your earlier post about a surgeon in Indianapolis? I have my revision surgery scheduled in March with Terry Trammel. He said he works closely with Dr . Bridwell and I think Dr. B is a great consult for you. Good Luck!!

megz
01-30-2010, 09:59 PM
I just got fused from T2-pelvic 15 days ago..I had pretty significant curves, but I saw many Dr's before picking the Dr. that I picked.. They pretty much said the same thing. Its not something I had to have done immediately but if I held off until I was 40s or 50s I was risking not getting the correction that I got as well as developing heart and lung problems. I suggest you go see other Dr's because if you are basically putting your life in this persons had. Any gut feelings I had about a Dr. made me def not want them operating on me. I hope this helps. I;m sorry I can't really tell you what I cant or can do as of yet. But the pain that I experience before the operation is gone..Its mostly muscle pain that I am experience now but in a few weeks I am sure I will be as goood as new =)

Jimbo
01-31-2010, 05:16 AM
s000 much pain lying on incision sites. constant pressure on back. god othurts

Jimbo
01-31-2010, 05:22 AM
feel i wont get better amd miorphine making me into a nihgtmare.

had enema and evacuated but bowles still wont work on their own

tummy burning feeling, get motr enemas tomoro

csc
01-31-2010, 08:27 AM
Jimbo,
It's still very early. You will need to have some patience with your body and healing. It's been through a horrific ordeal. Contact your doctor's office and they'll have some advice.
Take care and hang in there! Recovery is long.

Radiogirl
01-31-2010, 09:32 AM
I'm sure Jimbo is still in hospital. Jimbo...you just had your surgery done...this is only temporary...remember that. Your body has miraculous healing powers and we are all praying for you..and that sure helps too! Tomorrow will be better than today. Just try to get through today. Sleep as much as you can...your body restores itself when you are sleeping. Hang in there Jim!!!

Laura

jrnyc
01-31-2010, 03:49 PM
Hi Jimbo
for whenever you can read this..ditto the last 2 posts...others have gotten thru this..just tell yourself you will too...it just seems so awful & hellish now...but it will be better...the more you sleep, the faster it will seem that the days will go by...please keep your hope in your heart...cause i know..& i bet everybody on forum knows...we are praying for you & know it will all be OK in a little while..hang in there...just breathe...one after the next...breathe..

jess

osumike
02-01-2010, 08:57 AM
Anybody have terrible pain in the hip area? It feels like my hip is jammed up into my pelvis or something. This happens every once in a while and its just miserable. I can hardly move or walk. Couldnt even go to work today...

jrnyc
02-01-2010, 01:53 PM
hey mike
i have really bad hip pain..but dont know if it is from my scoli or degenerative disc disease..do you have any herniated discs?
sorry you're in pain

jess

Radiogirl
02-01-2010, 06:42 PM
Yeah, I do to. My hip pain is actually just as bad if not worse than my back pain. Dr. said it's just cuz my whole torso is thrown off.

RitaR
02-01-2010, 08:33 PM
I hear you guys. I don't look in the mirror anymore. The belly button is now off to one side. OMG!!! Can someone really put that back over there where it belongs please and soon - this is really starting to freak me out! :)

osumike
02-07-2010, 05:21 AM
Well we just got done packing and loading up the car. We're headed to St. Louis to see Dr. Bridwell tomorrow. Its going to be about an 8 hour drive, but well worth it. Lets just hope we dont get stuck in a blizzard on the way!

RitaR
02-07-2010, 02:43 PM
Good luck Osumike. You're in good hands in St. Louis. I travel to St. Louis in May for preop and then surgery in July. Hopefully they can move me up sooner. We'll be thinking about you. Keep us posted.

Susie*Bee
02-07-2010, 02:53 PM
Hope the drive goes well and your appointment is very informative. Keep us posted on what Dr. B. says. Best wishes.

Radiogirl
02-09-2010, 08:22 PM
OSU Mike!...did you go to St. Louis? Did you get caught in snow??? Let us know asap about your appt. there. That will be my home for a couple weeks in April. :(

osumike
02-10-2010, 07:59 AM
Yea thie trip to see Dr. Bridwell was awesome. That place is absolutely amazing. It just seems so efficient and state of the art. Even down to the parking. Anyway, we were in there for 4 hours and 40 minutes. As soon as I got in there to check in, they had me go across the hall to get some xrays. The machine that took them was something ive never seen before. I stood inside this thing, and it took the xray like all the way around me if that makes sense. I think they called it an EOS machine? They were the clearest xrays ive ever seen. So then Dr. Bridwell came in and really seemed to be studying them and said id be fused from T3 to Pelvis with the anchors. I also have some spurring around the T5- T6 and degeneration around L4- L5 i think. He also said I have ( something displasia)? I cant remember what he called it. Something about a sack that is enlarged around my spine that is expanding and willl make it a little harder to do the sugrery. maybe one of you can help me out with that one.

I asked about a thorocoplasty to fix my right rib hump. He said if thats what I wanted, he wouldnt do it all at once. He would fuse my thoracic curve and perform the thorocoplasty, then fuse the lumbar about 2 years later. But in the meantime, I would still have lower back pain. So im kinda split on what i want to do. Id really like to have the hump gone, but I really want to be out of pain too.

So in the mean time, he ordered a pulmonary function test, (which Ill do here in Ohio), then I have to go back to St. Louis to get a myleogram. Hopefully within the next month or so. i guess then we'll decide what we want to do as far as surgery goes. Im really leaning toward having the full fusion to be relieved of pain, and worry about the rib hump later.

Thats all for now, if I think of anything else, you know Ill put it up here.

And no, we actually beat the snow! It started snowing like right after we got home monday night. Now we have about 10 or 11 inches on the ground. NICE!

osumike
02-10-2010, 08:13 AM
Oh yeah ...a few more things...Dr. bridwell measured my curves at 66 thoracic and 66 lumbar compared to 65T and 55L that Dr. Orr measured at the Cleveland Clinic. Also, on the scolimeter, the thoracic was 29, and lumbar was 12.

And for anyone going to St. Louis for surgery or consults or post- op or whatever, you HAVE to go eat at Pappys Smokehouse! Its been on the travel channel and Man vs. Food- The food there is EXCELLENT! Its not too far from Bridwell/ Lenkes office or any of the hotels you might be staying at. www.pappyssmokehouse.com - check it out!

jrnyc
02-10-2010, 08:17 AM
wow, mike..sounds amazing & so advanced!!

if it were me, i'd go for getting rid of the pain...but i am older...cant remember your age...still...if you could be free of pain, that would be such a blessing! it sounds like you have some serious stuff going on.....

it is such an important decision! i know you will make the right one for you!

best of luck
jess

RitaR
02-10-2010, 05:43 PM
Wow - Mike. Glad you liked St. Louis. I did, too. They are state of the art I am sure. They treated me beautifully and I had no doubt that Dr. Lenke knows exactly what he's doing. Dr. Bridwell impressed me, as well. I had them both looking at my awful back! They are both very professional and knowledgeable. Yeah, aren't those x-ray machines wild? I had never seen anything like it either. I was impressed. And, if I don't have to lay on those horrible hard uncomfortable tables for any length of time I'm happy. My back does not like laying down on those tables!!! I'm scheduled for surgery in St. Louis in July, but I am hopeful they will get a cancellation for me sooner. Crossing my fingers - crossing everything.... I didn't have much of a decision to make once I made the trip to St. Louis. Dr. Lenke told me exactly what needed to be done and I had no problem understanding the importance of getting it done. I'm glad you liked them.

Doodles
02-10-2010, 06:27 PM
Mike--We'll be fused almost the same. I'm intrigued by the EOS x-ray machine. That must be really new since last Feb. and March when had surgery it was still the old style. I would have loved to have that. I didn't know to ask separately about the thoroplasty of Dr. Lenke. I do still have a rib hump but nothing as bad as before. I don't think he would do it anyway. I had so much rotation also they had enough to deal with. It sounds like you are really ready to go. Fabulous! Janet

JenniferG
02-10-2010, 09:45 PM
I'm not quite sure whether you mean you can have the thoracoplasty and fuse the thoracic area or be fused T3-pelvis in one go without the thoracoplasty? I am fused T4-pelvis with no thoracoplasty and my rib hump has gone. Dr. Askin said it would remove 60% of the rib hump and I was happy with that, but it's 98% gone. There's only the very slightest rise, which I can feel but it's not visible.

titaniumed
02-10-2010, 10:59 PM
Mike
No thoracoplasty for me either, and no rib hump. I wasnít really concerned with the hump, it was about the pain.

We will be similar also, you will be one level shorter, but have a much longer construct.

Ive attached my x-ray, so you can see my anchor screws. They are the really long ones at the bottom. The are 8mm dia. The rest of my hardware is 6mm. Any mention of going in from the front?

Ed

osumike
02-11-2010, 03:01 AM
Nope. Dr. Bridwell said it would be all posterior. And yes Jennifer, thats what I mean. I thought Ive read alot of you saying the rib hump basically disappeared after the spine was de- rotated. Im definately doing this to allieviate the pain, but yea, no more hump would be nice.

Ed, I think you posted that picture somewhere else, I wasnt sure if it was you. The long anchors dont bother you ever?
The doctor said that when I lay on my stomache on a flat surface, that gives a pretty good idea of how the rib hump will look after surgery without thorocoplasty.

Also, Dr. Bridwell mentioned he wouldnt be taking bone for a bone graft. Said he uses Bone Morphogenetic Protein. Anyone else heard of this?

I dont know. I really appreciate your input though!

debbei
02-11-2010, 04:01 AM
Oh yeah ...a few more things...Dr. bridwell measured my curves at 66 thoracic and 66 lumbar compared to 65T and 55L that Dr. Orr measured at the Cleveland Clinic. Also, on the scolimeter, the thoracic was 29, and lumbar was 12.

And for anyone going to St. Louis for surgery or consults or post- op or whatever, you HAVE to go eat at Pappys Smokehouse! Its been on the travel channel and Man vs. Food- The food there is EXCELLENT! Its not too far from Bridwell/ Lenkes office or any of the hotels you might be staying at. www.pappyssmokehouse.com - check it out!

Wow Mike,
66T and 66L is EXACTLY what I measured prior to surgery. Sounds like you had a great appointment. I hope you can get a date set quickly.

debbei
02-11-2010, 04:06 AM
Also, Dr. Bridwell mentioned he wouldnt be taking bone for a bone graft. Said he uses Bone Morphogenetic Protein. Anyone else heard of this?



Yes, I had some BMP used during my surgery, as well as some of my own bone that he snipped off my fused levels (I forget what they call that.) BMP is supposed to be VERY good at causing fusion.

titaniumed
02-11-2010, 11:01 AM
Mike

I show off my body when ever possible. Itís a Tim Allen complex I have, you know, "hey, check this out" rraaaooouuuugggghhh! LOL Its like showing off one of my hot cars. 650hp, supercharged, and check out the suspension! Well, you might say my anchor bolts are part of my modified suspension.

We should have a forum x-ray show.....like a beauty contest. If you trip on the catwalk, you will get DQd. LOL

================================================

The long anchors made my hips sore in the first few months, but now I donít feel them at all. I donít feel any of my hardware.

I had NO bone used on me at all. Only BMP, dripped into sponges, inserted into 13mm peek cages, or spacers. No bone means no digging on the hip or taking a rib or using any bone broken off my vertebrae. BMP fuses in 6 months, vs 12 months for non BMP fusions. Here are links.

Ed

https://www.infusebonegraft.com/how_infuse_works.html

https://www.infusebonegraft.com/bone_morphogenetic_proteins.html

http://www.back.com/article-infuse-surgical.html?infusebox=yep

Doodles
02-11-2010, 01:33 PM
Mike--I had the BMP too. I think he and Lenke both insist on its use. It's very expensive but very good for fusing. Mine was mixed with my own bone from osteotomies and thankfully nothing taken from a hip or rib! Janet

osumike
02-11-2010, 07:36 PM
Here is an Xray from that EOS machine in St. Louis....

titaniumed
02-11-2010, 07:43 PM
Mike

Very interesting T10 and T11 shapes....

Thx for posting
Ed

jrnyc
02-11-2010, 07:48 PM
wow, Mike...wicked looking lumbar curve...my lumbar curve is 61 degrees, but i dont think it looks near as bad..however, i know i am in denial about it...i am fine until i SEE my x rays...then i break down & am in tears....i think it is because once i see them in black & white, i realize why i am always in pain in that area of my back, & cant deny how bad it really is!!

i am just wondering...that fancy new x ray machine...EOS, is that what it is called? is there any difference in the resulting pix...or is the difference just in not having to lay down on those uncomfortable tables for scans? what i mean is...is it the method that is different..or does it also give a different result?

best of luck with your surgery plans..

jess

osumike
02-11-2010, 08:32 PM
yeah from what I understand, the machine gives a 2d image immediately to the tech. performing it, and then can turn it into a 3d image. When it takes the xray, its almost like youre in a small closet, and it takes the xray all around you. Its pretty cool. Here is a couple links....

www.biospacemed.com

www.youtube.com/watch?v=0lxijQyKLQc

Doodles
02-12-2010, 03:13 PM
Mike--Thanks so much for that info. The video is pretty amazing. I hope I get to use it for my year check-up. This should really help what they are able to do for you. Janet

jrnyc
02-12-2010, 06:36 PM
wow...very new age-ee! too bad it cant make my crooked back look straight!! :)

thanks for the info, mike

jess

RitaR
02-13-2010, 04:28 PM
I'm impressed with you all's x-rays preop and ten to see your x-rays postop. Keep those coming. It's nice to see how others have been helped. I hope to be in those shoes someday soon.

JenniferG
02-13-2010, 08:50 PM
Not sure if this will work Rita, but here goes:

http://i463.photobucket.com/albums/qq356/topsi_photos/scolibody005Small.jpg

and

http://i463.photobucket.com/albums/qq356/topsi_photos/scolibody003Small.jpg

and

http://i463.photobucket.com/albums/qq356/topsi_photos/scolibody004Small.jpg

jrnyc
02-13-2010, 10:06 PM
beautiful, JenG...so very straight! amazing...it looks great!

congratulations on going thru it & healing!

jess

osumike
02-15-2010, 05:44 AM
Well Im going in for a pulminary function test today...After that, Ill be making an appointment with Dr. Bridwell again to have a myelogram done in St. Louis. I was just reading about those, it sounds like it going to be a real pain in the butt. Have most of you had to have one done too?

Vali
02-15-2010, 05:53 AM
I'm still trying to work out how to post mine. Should call my 5 year old step granddaughter!

LindaRacine
02-15-2010, 11:36 AM
Well Im going in for a pulminary function test today...After that, Ill be making an appointment with Dr. Bridwell again to have a myelogram done in St. Louis. I was just reading about those, it sounds like it going to be a real pain in the butt. Have most of you had to have one done too?

Mike...

The CT/myelogram I had wasn't painful. It was a little uncomfortable having to get in various positions on a hard table, but the procedure where they inject the dye was a piece of cake. I think you may be thinking of discograms, which are supposed to be very painful.

--Linda

RitaR
02-15-2010, 12:46 PM
I think what Linda says is right - probably just uncomfortable badly laying on that hard table for any length of time. I know for me taking x-rays can bring me to tears, especially MRI, where you can't move at all. My back just does not take to laying on that hard table for any period of time at all!

osumike
02-15-2010, 06:40 PM
yea rita, the MRI i had to do was absolute torture. I couldnt make it through the thoracic MRI. I had to have them take me out because i couldnt lay still on the table anymore...

jrnyc
02-16-2010, 12:10 AM
Hey Mike
i had a myleogram a few years ago..ditto what linda said...i was really scared, but it wasnt bad...& i mean i was TERRIFIED beforehand! but it was not bad...you have to lay still afterwards for a few hours, so you dont get the dreaded headache that can happen with any change of pressure in the spinal column...it can happen with spinal taps, etc...but i stayed still & was fine...

however...if you had trouble laying on a table with a plain old MRI, i worry that the table will feel too hard on your back...i find that part difficult with any procedure requiring laying on those hard tables! i would suggest you try to discuss this with the office of the radiologist you will be going to....

best of luck
jess

osumike
02-16-2010, 06:23 PM
Yea...we'll figure something out. I had my pulminary function test yesterday, everything was good. I also got a call from Dr. Bridwells office today. They want me to see a cardiologist out there, too. Anyway, Ill be going back out there from March 2nd thru the 5th. On the 3rd, Wednesday, Ill have the myelogram. Thursday Ill be going into the Operating Room to make sure I fit on the surgery table( I am 6'9"), and he also wants to look at my pedicles with a floroscope. Then on Friday I guess the plan is to discuss the plans with the doc as far as where we go from there. Hopefully we'll set a date for surgery.

RitaR
02-16-2010, 06:52 PM
Surely there is some other way to do it rather than to have someone with 100+ deg curve lay on that horrible hard table.

osumike
03-01-2010, 06:39 PM
Heading to St. Louis in the morning for a bunch more tests. Wednesday is a CT-Myelogram, Thursday is ANOTHER Echocardiogram, Dr. Bridwell wants to look at my pedicles with a floroscopy, and to see if I fit on the operating rack, AND I have to get ANOTHER MRI of thoracic and lumbar spine. Friday is mettings with the cardiologist and Dr. Bridwell again. Whew! Full schedule!

What I really dont understand is why they need me to do another MRI, since I just had one done a month ago at a hospital near my house. Can they really differ that much from one place to another? Can anybody that has had surgery in St. Louis tell me if they required you to have one at their facility also? I could barely make it thru the last one. Im not looking forward to this at all.

Radiogirl
03-01-2010, 07:07 PM
Mike, I just had my MRI there in St. Louis last Wednesday, but I never had one before. You could maybe ask for a sedative to help you through it. I didn't really need it...BUT...I did ask to listen to music and that helped. They give you earphones...but make sure they turn the music up real loud cuz there is soooo much loud banging and clanging going on through the MRI. Good luck to you Mike. RitaR is there in the hospital...she had her surgery today!!!

LindaRacine
03-01-2010, 09:59 PM
Heading to St. Louis in the morning for a bunch more tests. Wednesday is a CT-Myelogram, Thursday is ANOTHER Echocardiogram, Dr. Bridwell wants to look at my pedicles with a floroscopy, and to see if I fit on the operating rack, AND I have to get ANOTHER MRI of thoracic and lumbar spine. Friday is mettings with the cardiologist and Dr. Bridwell again. Whew! Full schedule!

What I really dont understand is why they need me to do another MRI, since I just had one done a month ago at a hospital near my house. Can they really differ that much from one place to another? Can anybody that has had surgery in St. Louis tell me if they required you to have one at their facility also? I could barely make it thru the last one. Im not looking forward to this at all.
Mike...

It could be any number of things. First, I'd check to be certain that Dr. Bridwell is aware that you already had an MRI. It's possible that the fact that you'd had an MRI was not in his consciousness when he asked you to get one My second thought... Did your first MRI cover the entire spine? It's possible that the first one only covered the lumbar region, for example, and they would want the entire spine. Or, my last thought, was that the image quality wasn't great on the original.

It doesn't make sense to me that they'd have you do an MRI in St. Louis just for the heck of it. Your insurance company would definitely not put up with that!

Regards,
Linda

osumike
03-04-2010, 09:22 PM
Well....its been a rough couple of days out here in St. Louis. The first time out here a few weeks ago went so smooth and seemed so organized. this is the complete opposite of that. I'll skip yesterday to tell you about today, but just believe me when I say it was miserable. OK. My echocardiogram was scheduled for 9am today, they didnt get me in until 10. I had an appt. with Dr. Bridwell to go into the OR at 10:00 to see how I fit on the operating rack, and for him to look at my pedicles with a floroscope, and we sat in the surgery recovery area from 11:00 until they took me down at 2:00. Then I had an MRI scheduled for 4pm. We got there and was told we had to walk to the opposite end of the hospital to the pharmacy to get the valium they ordered for me, only to be told there was no prescription called in for me. an hour later this was resolved, and at 5:30 I went in for the MRI. So it was a 10 hour day at Barnes- Jewish Hospital today.

While I was laying on the operating rack today, Bridwell made a comment that he thought it would be too much for him to do the complete fusion, from T3 or T1 to sacrum. Thats not what I wanted to hear. I have a meeting scheduled with him tomorrow at 10am, so Ill get all the details then.

Well I have a pounding headache now, so Im going to bed. Hopefully tomorrow will be better.

Susie*Bee
03-04-2010, 09:37 PM
Sorry to hear you had such a stressful day, with so many times off. Hopefully your appointment tomorrow will be better. Keep us posted on how it goes, and hang in there. You'll get through this.

JenniferG
03-04-2010, 10:50 PM
Sounds like a nightmare of a day, Mike. Hope a good sleep has you feeling better tomorrow and that tomorrow goes smoothly. I am sure Dr. Bridwell will come up with a good plan for you. Let us know!

LynetteG
03-04-2010, 11:16 PM
Wow Mike what a rough day you had you poor guy! :(. I bet anything tomorrow will be a way better day with the outlook of successful results for you.

osumike
03-05-2010, 11:42 AM
small update here...my girlfriend and I are sitting in Dr. Bridwells office right now waiting to be called back...we had to see the cardiologist earlier this morning. He too, thinks I have marfans syndrome, as he is a specialist in that area. They took 4 vials of blood that they will send to Belgium for a genetist(sp?) to look at. I believe he is recommending the back surgery needs to wait until we/they confirm marfans or some other condition that is less common and reletively newly discovered. (as soon as I listen to my voice recorder Ill put the name of that on here).

So as soon as we go back to see Dr. Bridwell Ill know more and hopefully set a timetable for all of this to be done. Man, I came out here for back pain, and Im leaving here with possible heart surgery before spine surgery!

JenniferG
03-05-2010, 04:43 PM
I'm so sorry you're having such a hard time Mike. But it's better to know about these things than not. I am sure it will all work out in the end. This investigation is important but it will lead to you getting fixed one way or another. Think of a time when these things are all fixed and you're back living your life but in much better health. Then, just head doggedly in that direction.

Good luck.

osumike
03-05-2010, 10:12 PM
Well apparently this horrible headache Ive had is from spinal fluid leaking from the myelogram I had a few days ago. Today I had a blood patch to help the headache. Luckily it did.

Anyway, the meeting with Dr. Bridwell. Didnt really go as I'd hoped it would. He really doesnt want to fuse me from top to bottom. He says his first choice for me, if I were his little brother, would be a fusion from T-11 to sacrum. 2nd is to do nothing at all. 3rd would be fuse the thoracic curve only with possibly a thorocoplasty. 4th choice is to fuse T-3 to sacrum. Apparently because I possibly have Marfan's, hes worried about getting a good fusion. Im pretty upset to hear this.

I guess he would do the full fusion if thats what I really want, but I dont know. I have this huge rib hump that I really want gone, but I doubt thats going to happen now. I asked about pain relief from the lumbar fusion. "about 80% of my patients get 80% pain relief" is what he said. I told his nurse Bernie Id think about this and let her know in a week or so. Surgery will probably be end of May or beginning of June.

Any thoughts?

LindaRacine
03-05-2010, 10:20 PM
Hi Mike...

I can imagine how unsettling it is to hear that your rib hump won't be reduced, but I seriously doubt that Dr. Bridwell would be steering you to the smaller surgery if he didn't feel really strongly about it. I'd hate to think about going against a surgeon's advice, and the possibility of having a bad outcome.

Sorry that this has all been so difficult.

Regards,
Linda

LynetteG
03-05-2010, 10:58 PM
Hey Mike, did the doctor say that he wouldn't be able to get rid of the rib hump through surgery? I'm so sorry to hear of all that you are going through, and the tough decisions you have to make. You will ultimately make the right decision for you, and it sounds like you have a great doctor. It will all work out in the end, and you will be a stronger person as a result!

LindaRacine
03-05-2010, 11:54 PM
Hi Lynette...

If Mike only has his lumbar curve done, he won't get any reduction of the rib hump. The thoracic curve has to be corrected for that to happen.

Regards,
Linda

titaniumed
03-06-2010, 12:33 AM
Mike

Sorry about all this. Im just looking at the order of Dr Bridwells choices here. It seems that with the option of doing nothing being his 2nd choice, tells you that he is confident with doing the T11 sacrum surgery. This is better than doing nothing as his first choice.

One things definite, you will have to wait for the blood work to be completed. After this, all your cards will be on the table.

Did you ask him if he were to do the lower surgery T11-sacrum, could the upper levels be done at some later date? Maybe a year or two later? Maybe he could anchor the upper rods to the lower construct? This might be a possibility.
Ed

osumike
03-06-2010, 08:22 AM
Hey everyone I really appreciate all your concern...it really means alot. This is a great bunch of pepole on here...

Ed- Yeah I addressed the same thing to him, aboutn his first choice being T11-sacrum, and 2nd being to do nothing at all. I just dont understand how he could do nothing with the amount of pain, and amount of pain killers i take to control it, and with the rapid progression of the curves over the past few years. He is the doc though, and a highly respected one at that I believe, so I trust his advice. Its just not what I wanted or expected.

About the thoracic fusion, yes, he did say that is definately something he is considering doing a year or two later. Just wants to see how the first fusion takes I guess.

I dont know, I have lots of questions about all this already that I'll be emailing to his nurse, so we'll see how things from here. If the lumbar fusion will relieve the lower back pain, and I can look forward to a possible upper fusion later, it'll be worth it.

Thanks again guys....

JenniferG
03-06-2010, 03:58 PM
"I dont know, I have lots of questions about all this already that I'll be emailing to his nurse, so we'll see how things from here. If the lumbar fusion will relieve the lower back pain, and I can look forward to a possible upper fusion later, it'll be worth it. "

That sounds reasonable. Hope you get the answers you need Mike.

txmarinemom
03-06-2010, 08:31 PM
Yes, I had some BMP used during my surgery, as well as some of my own bone that he snipped off my fused levels (I forget what they call that.) BMP is supposed to be VERY good at causing fusion.

FYI, the "snipped off bone" comes from the spinous processe of each fusion-involved vertebra.

If you look at a model of the spine (or image of an individual vertebra (http://en.wikipedia.org/wiki/File:Gray313.png)), the spike-like protrusions off the back of each vertebra is a spinous process. There are slight shape differences in the cervical, thoracic and lumbar areas (due to functionality), but they're still fairly easy to identify.

With me, they used a combination of these "leftovers", allograft (cadaver bone) and rh-BMP2. Absorbable collagen sponges (ACS) soaked in BMP are placed before they pack the graft, and it I believe it definitely hastened my fusion.

I know by 2 months, most of my major restrictions had been lifted ...

(BTW, you can clearly see the clipped spinous processes and placement of BMP soaked ACS in my surgery photos ;-)

Pam

Doodles
03-06-2010, 09:12 PM
Mike--
Just echoing Jennifer's thoughts here. Sure hope you get a better understanding of what you are dealing with after you get blood tests back. Your confidence in your doctor is going to be a big part of your decision. Sorry you have so many complications to your decision. Good luck. Janet