39 days and counting....

[osumike]

Well we drove to st. louis today- I have one last appointment with Dr. Bridwell tomorrow before we have to be back out here for surgery September 16.

[JenniferG]

Stay strong Mike. Get through this and there'll be plenty to look forward to!

[LisaB]

Good luck Mike! At my last appointment they sent me for a blood draw and ekg after meeting with Dr B. I'm on for Aug 31. I see him again Aug 30 at 7am and then go have a central line put in. Bernie will give you your schedule tomorrow. I'm getting really nervous but have to believe this is the right thing to do. Looks like I'll be over there for 2 weeks. Hope everything goes well tomorrow!

[osumike]

Once again I left St. Louis a little dissapointed. Im really starting to consider seeking out another surgeon, but this has been such a long process, and I know Dr. Bridwell is so good and so respected, I dont know. He basically said that when I go in for surgery he's going to "pin" my lumbar spine where its at now, to stabilize it and stop it from progressing. He wont aggressively try for any correction. Why would I go through all this, pain, money, time, whatever, with no guarantee that he'll try for ANY correction? That basically says to me that BOTH of my 65-70 degree curves will not be any better, my rib hump will still be huge, the amount of pain I'm in now will still be the same, WHY? It seems like this has been the biggest waste of time and money. I really dont know what to think or do right now. It sounds like if I was 15 years younger, I'd be fused from top to bottom.(which is what I want). It sounds like if I was 15 years older, I'd be fused top to bottom. I have these 2 huge curves, a rib hump and he's wont aggressively try for any correction? WHATS THE POINT?

[osumike]

And oh yeah, I was also told that they HAVE to use BMP on me, which costs $1000 a milligram, and they'll need anywhere between 160 and 240 milligrams on me. Not sure whether my "insurance" will cover this, but I'd be VERY surprised if they do.

[debbei]

Hi Mike,
what are his reasons for not wanting to achieve any correction? I'd probably be disappointed if I heard that news too.

I can't say that I'd go forward with the surgery if I had ANY doubts that my surgeon was doing the right thing. Did you get opinions from other surgeons?

[jrnyc]

hi Mike
can you possibly put a hold on all this..til you find out WHY Dr Bridwell wants to do it the way he described...? i know you've gone thru a lot to prepare for the surgery...and it could be a nuisance to temporarily suspend your plans...but it might be better to be sure about it all before proceeding...?

and the BMP thing...would you not want to check with your insurance company...before taking on a bill like that...? for a surgery you now...have different feelings about?

sorry if i sound...blunt...but i feel so concerned hearing about what you are going thru
(maybe it's the social worker in me...more likely it is the scoliosis in me)

best regards..
jess

[LisaB]

Mike - Did you ask Dr Bridwell why the change in approach? Also, I know at one point Dr. Bridwell and a cardiologist thought you had Marfans. Was that diagnosis ever confirmed? If so, that probably plays into the conservative approach. If you're not comfortable, though, I would definitely put your surgery on hold and get another opinion from one of the NY doctors. You can usually get some pretty good air fare to NY and it might be worth the peace of mind.

[loves to skate]

Mike,
You need to call Dr. Bridwell and ask him why he is choosing this approach. It may be he has a very good reason. I wish I had asked my surgeon more questions before my surgery as I was disappointed because I didn't get much of a correction. After the fact, I asked him why and he said because I had osteopenia, he was afraid to put too much pressure on the pedicle screws because they might pull away from the bone. So he had a very good reason. A lot of the time they aren't sure until they get in there and maybe he can get more of a correction than he first thought. Did your bending x-rays show a stiff curve? You didn't say how many vertebrae he was going to fuse.
Good luck!
Sally

[ADMoul]

Wow, Mike, I have never heard of anything like that--just "pinning" the spine to keep it stable?? I'm sure there must be a good reason, but I can understand how frustrated and disappointed you would be to go through all that and not have any correction. Would certainly ask the Dr. for more info. and if need be, get some other opinions. I know it's hard when you get yourself mentally ready for something like this and then not have it happen, but it sounds like you need more information. Best of luck to you.

[JenniferG]

I'm with previous posts. You need to know why Dr. Bridwell has decided to simply pin your spine with little effort to correct the curve. You need to know if you go ahead with this that you will be better off painwise, at least. Dr. Bridwell appears to be a respected surgeon so he probably has good reason, but you need to know these reasons before you ditch the surgery and go looking for a second opinion. If there's good reason why he doesn't want to try correcting the curve, and if he still thinks your pain will be eased, then it's still worth considering. If not, it's time to look for another surgeon.

I'm so sorry that you're going through this.

[osumike]

The plan is to fuse T11- sacrum. No, I never had any bending xrays, I dont think. I had a couple where I just layed on the table, but maybe Im not real sure exactly what bending xrays are...I asked him how much correction I could expect, and he pointed at one of those that I layed down for and said that would be pretty close. then one of the nurses measured it and it was like 56 degrees. After Dr. B left the room, I mentioned a few of these concerns to his nurse Bernie, and she sort of acted like there would definitely be some correction, that he wouldnt go in and NOT try for any at all...if that makes sense. I dont know, I recorded the whole meeting, so I need to listen to that again and maybe send Bernie an email. I mean if I cant get a promise that he'll at least TRY for correction, and that this HUGE surgery will relieve pain, then I really think I have to go talk to someone else...right?


And about the marfan's...I do show a few characteristics of it. There is no way to diagnose this disease other than by having a genetic test done. Another doctor I saw at Barnes-Jewish, took some blood to send to Johns-Hopkins for the test, but of course my insurance company wouldnt cover that, so it fell through.

[jrnyc]

hi Mike
i would very much agree that another opinion is in order...any doubts, and i think you owe it to yourself to hear from another surgeon!

this surgery is there...waiting for you...if you have to put it off, or on hold, i realize you might feel let down and disappointed...but that would be nothing compared to possibly having a surgery that did not attempt to achieve the results you so want to see!

oh...bending X rays...when done laying down, the tech asks you to bend to each side as far as you can go and hold the position til he takes the X ray...it really shocked me just how difficult it was for me to do!

best of luck...
jess

[Lorraine 1966]

I agree with all the others Mike, I saw your Xrays and PLEASE if you are not comfortable and have any doubts at all either contact Dr B. and ask what degree of correction is he expecting, and or get another opinion. This will be one of the most important decisions you make in your life so just sit back, think it over and do all you have to do to make sure you are right with it all.

I did have a similar curve to yours a bit worse in the thoracic though and they did not get a perfect correction and I still have a small hump on my back but I have lived with that and it does look ok. But that was 44 years ago, goodness me they should be able to do a lot better now. I have read on here of adults who have had bad curves and have been corrected just brilliantly. Good luck and I really mean that, I will be praying for you. All will be OK I have that feeling but think you have to do a bit of checking to get your self confident with it all. Thinking you are already doing this.
This may seem silly, but would your height have anything to do with it.

hugs across the sea
Lorraine.

[Confusedmom]

Mike,

This really surprises me. I'm thinking it must have something to do with the Marfans, or maybe Dr. Bridwell thinks you just really WANT a selective fusion? I'm just surprised because he took one quick look at me and was like "T3 to sacrum," as if it was kind of his standard. And I have noticed several other people on this forum who have been fused all the way down by Bridwell/Lenke. Bridwell, like all the other surgeons I have talked to, said to expect about 50% correction (I had the impression they tell almost everyone that). Does he think you are going to need additional surgery later? Maybe he is trying to preserve your flexibility? Just thinking out loud.

On the BMP question, Bernie told me that they work pretty hard to confirm ahead of time that your insurance will pay for it. In fact, she said they routinely put the paper work through after your first appointment. I would check with her to get confirmation that they cleared it with yours.

Evelyn