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View Full Version : Not good news --my bone drug's not working! I'm scared!!



babyboomer16
03-02-2012, 10:57 PM
Hi all,
Four months ago I posted that I saw Dr. Perra of the Twin City spine center. Since then I have been taking a bone building drug called Forteo. He wants me to take this for osteoporosis so it will add bone and I can have a second revision surgery. I believe most of you know my story. If not, it explains it pretty good on my signarture below. I received this news in a letter, so I didn't get to ask any questions of him. Because of all the metal in my spine and left arm(from a break) and because I have excruciating nerve pain on my right buttock down my leg, they can only scan my right wrist. He wrote that my first reading of my radius was 0.440g/cm2, and this one, four months later, after the Forteo, is 0.433. But he did say the the latest one was done in a completly different manner than the first one, and could be why he got a reading of accually bone loss!! I was crushed!! I thought it would be better than that. He examined me this last time(two weeks ago) and I am bent over at a 45% angle, and I am in terrible pain. I can't see anything but the floor. A rod broke near the bottom of my back(L3/4 I believe.) And there's a screw and two or three bones pushing through my skin so tight that they're about to pop right through. (also low back). As you know I was fused from T4 to my pelvis.(twice) by the same surgeon.( Not Dr. Perra.) He wrote in the letter that if we do this now the risk for failure are too high and I could even end up paralyzed. The first two surgeons didn't do anything as far as strengthing my fusion in an anterior way. Dr. Perra plans on doing this in a two part surgery (front and back), if he does surgery at all! I'm so scared that I will be like this the rest of my life. I feel so for my family too. Should I go for another opinion? Am I being too quick to judge this surgeon? I feel in a way he just doesn't want to do me. I didn't think there would ever "not" be any hope. He wants me to be on the drug another three months and then test me again and evaluate the situation. The other surgeons didn't mention osteoporosis.
One more thing. The other surgeons wouldn't go in the front of me cause of all the invasive stomach surgeries I have had. Dr. Perra will go in through the front if he does surgery, cause it's in such a low place in front. But why can't he do a TLIF<don't know about that abbrev.(reinforcment in front~~ from the back incision) if he knows how? His nurse told me he does them--but would prefer not to do one on me. Wouldn't it be better to do one on me? Oh my, I am so sad, because I can't live this way, and I am so scared about the way his letter sounded. Well, sorry this was so long. I am going to an endocronologist(as soon as I can) to see if he can put some insight on this , as it seems as though this drug(Forteo) made from "human parathyroid GLAND" isn't helping (yet anyway). All suggestions and advise would be so appreciated~~~ in this day and age, shouldn't there be something that someone can do? What about Lenke in St Louis? I'v heard he's great. I live in central So. Dak. Stay strong everyone~~I know that I am not alone in my mysery. I don't mean to be a big baby~~ Truley wishing you all the best~~Linda

rohrer01
03-03-2012, 12:27 AM
Linda,
I'm so sorry to hear your news. I don't know about Dr. Perra as a surgeon, other than he comes highly recommended from other surgeons from what I've heard. I have actually seen Dr. Perra about 14 years ago. His personality seemed a lot to be desired from my perspective, but in his defense, he was one of the most thorough Dr.'s I've ever seen. I would trust his opinion here. I'm not saying don't get a second opinion from another big name surgeon. You just don't wany ANY surgeon operating on you out of their own security zone. It's too much risk to you. I wish you all the best!

Rohrer01

LindaRacine
03-03-2012, 01:44 PM
Hi Linda...

I'm so sorry about the crappy news. Hopefully, it's just a bad reading and you'll know a lot more in 3 months. I'm sure the waiting must be incredibly frustrating.

There are all sorts of reasons why TLIFs can't (or at least, shouldn't) be done, so I would assume that Dr. Perra isn't arbitrarily not planning on doing TLIFs on you.

Regards,
Linda

Doodles
03-03-2012, 03:38 PM
Linda--
I'm so sorry this news was so bleak. Personally, I like your idea about Dr. Lenke. He sees the worst situations. He is very helpful and thorough and knows what he's doing. I was definitely glad he did mine. The downside is it's hard to get in but it might be worth a call since your situation is a tough one. Good luck. Janet

babyboomer16
03-03-2012, 06:23 PM
Linda--
I'm so sorry this news was so bleak. Personally, I like your idea about Dr. Lenke. He sees the worst situations. He is very helpful and thorough and knows what he's doing. I was definitely glad he did mine. The downside is it's hard to get in but it might be worth a call since your situation is a tough one. Good luck. Janet Janet, Did you have saggital imbalance and or flatback syndrome, where you lean forward? I guess I'm asking what your situation was when you went in for surgery? I think that since I have acually had three back surgeries(the first in 2006 was smaller) but that's the one that started the problems, "anyway", since i'v had so many, it is probably harder to put the screws and all that stuff back in. Just guessing~~~on top of osteoporosis. I was wondering how bad those readings are. My GP told me my first dex- scan, done here in my hometown, that Dr. Perra is comparing this with , wasn't bad at all. So I am confused. I will make some phone calls Monday. Thanks for the support. I have heard so much about Dr. Lenke. Best wishes to you-Linda

KathK
03-03-2012, 09:13 PM
Hi Linda,

I can only imagine how upsetting it must have been to receive the letter from Dr. Perra after 4 months of taking the medication (injections, right?). I have been following your posts and rooting for things to turn around for you!

My surgeon was also Dr. Lenke. When I had my bone density test performed at Barnes-Jewish hospital, I remember reading that their "Bone and Mineral Health" center is one of the most highly rated in the nation. Please check out the link below about their department. Maybe getting a 2nd opinion with Dr. Lenke and also meeting with a doctor (endocrinologist) in their Bone Health Program would be helpful.

http://www.barnesjewish.org/diabetes-endocrinology/bone-health-mineral-disease

All the best,
Kathy

babyboomer16
03-03-2012, 10:00 PM
Hi Linda...

I'm so sorry about the crappy news. Hopefully, it's just a bad reading and you'll know a lot more in 3 months. I'm sure the waiting must be incredibly frustrating.

There are all sorts of reasons why TLIFs can't (or at least, shouldn't) be done, so I would assume that Dr. Perra isn't arbitrarily not planning on doing TLIFs on you.

Regards,
Linda Hi Linda, Thanks so much for responding to my post. You always put things in perspective for me. I get so scared that this is it, and I will be bent over the rest of my life. And the pain makes it hard to think clear about this whole situation. I think I need to work on getting the screw out of my back thats pushing on a nerve and almost popping through my skin. Then go on and see what happens in three mo. I'm pretty scared right now. You have a point about the bone scan reading though. Something doesn't sound right. I'm going to have one done here the same way the first one was done. And see what the reading is. Thanks for the info on the TLIFS to. Sincerely, Linda

babyboomer16
03-03-2012, 10:08 PM
Linda,
I'm so sorry to hear your news. I don't know about Dr. Perra as a surgeon, other than he comes highly recommended from other surgeons from what I've heard. I have actually seen Dr. Perra about 14 years ago. His personality seemed a lot to be desired from my perspective, but in his defense, he was one of the most thorough Dr.'s I've ever seen. I would trust his opinion here. I'm not saying don't get a second opinion from another big name surgeon. You just don't wany ANY surgeon operating on you out of their own security zone. It's too much risk to you. I wish you all the best!

Rohrer01 Hey, Thanks so much for the info. on Dr. Perra. That makes me feel much better that you've heard he's highly recommended. And I agree about his personality. He seems thorough. So maybe I need to be more patient on my end. Thanks again ~~Linda

Doodles
03-03-2012, 10:50 PM
Linda--
No, I didn't have sagital imbalance or flatback--just 2 pretty severe curves. See my signature info. But I know he does lots of revisions and takes the difficult cases so thought it might be one place to start. Janet

babyboomer16
03-06-2012, 12:02 AM
Linda--
No, I didn't have sagital imbalance or flatback--just 2 pretty severe curves. See my signature info. But I know he does lots of revisions and takes the difficult cases so thought it might be one place to start. Janet Janet, I remember now about the 6 oseotomies and the cages he put in you. That's a big surgery! I am trying to keep in mind that Dr. Perra wants to do all he can because of the two big surgeries I already went through. I have been throwing this around with my hubby to see about a second opinion with Lenke(providing I could get in). It would probably take a good six mo.(or more) But at least I would have one, if Perra falls through.(I see him again in 3 mo.) It's hard, because this isn't our first rodeo getting opinions. Well, you've been on here enough, you know the stories that have been told. When it comes to staying on our feet we have to get picky. Hope all is well~~Linda