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Thread: I may be starting over with a New Doctor~~~whew!

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  1. #1
    Join Date
    May 2010
    Posts
    345

    I may be starting over with a New Doctor~~~whew!

    Hi all my friends,
    I am in such a terrible place in my life right now. I was sure that I was going to have my revision surgery done for my saggital imbalance by now. I started with Dr. Perra last Sept. He's at the Twin City Spine Center in Minniapolis Mn. Anyway, he wanted me on Forteo for a while first. I was already in bad pain and bent over and to the right about 32 degrees. So my last appt. was Feb. 22 at Minn. with Dr. Perra. He did a dexa scan and said he would "call me" with the results. And he also said I had progressed 23% in my pitch forward. That was was not bad enough, I also have a screw impinged on a nerve at L4/5. It's excruciating pain. My ribs are sitting on my hip bones and squashing my female organs, my ribs are squashing my lungs. Anyway, he said he needed to get this surgery done right away. But two weeks went by and I got a letter from him(not a phone call) He read the dexa scan and there wasn't any change, and now he wants me to do the Forteo for another three months. Knowing full well I am falling apart physically and mentally. And even at that , theres no surgery date set after the three months. So I wrote him and told him I wanted surgery soon, preferrably in April, that three more months of Forteo wasn't going to make the difference and I was getting worse and worse everyday. Anyway, I went to my local surgeon that can do less invasive surgeries and ask him to remove the screw, as it was killing me. He agreed it needed taken out, but thought he didn't want to do a surgery if this surgeon(Perra) was going to do the big one. He was disgusted that Perra had sent me home. And he was the one that encouraged me to write the letter. If Dr. Perra doesn't respond in a short order, then Dr. Alvine(local surgeon), said he would call Dr. Lenke in St Louis for me and help get me an appt. So if Perra doesn't get back to me, I am hoping to go to St. Louis, Mo. to Dr. Lenke. I know I probably should have done this from the beginning, but I thought by now I would be a ways into my recovery. Darn! And had know reason to think that it would take this long. And I know if I start over with Lenke it may take a while too. But I am what I would call an emergency case, and I'm hoping Dr. Lenke takes that into consideration. It's also a longer distaqnce to St Louis from So. Dak.(13HRS.) We may have to fly to some appt. And even at that it's a couple hrs. to an airport. Well, what do you think? Am I being too impatient? I don't think so at all. My family and even the Dr. Alvine are saying it's rediculous to make me suffer this long. I , for the first time, have cried because the pain was so bad. Amd I am taking strong meds. I stay in bed all day because of the pain, and clothes won't fit on my bent over body. I am a complete recluse and have been forever now. A couple years at least. Dr. Perra even said if it gets worse I could be in a wheelchair soon. So I don't know why he won't set a date. OK enough of this pity party~~I do need input from ya all though. I'm so tired, and it's hard to think straight when you're in pain. Gentle Hugs to you all, (I have heard a lot of good things about Dr. Lenke)
    Linda
    Linda Brozik~~60 yrs. old at time of Lenke's first surgery. 62 now!
    Surgery 2006 L3/4 L4/5 double fusion/ instumentation/ With 2 cages
    This started adult onset scoliosis
    July 1st, 2010/ surgery ~~fused T10 to pelvis (long rods/ screws)
    Oct.20th 2010, extended rods to T4 / did osteotomy at L3
    Oct. 29th 2012 Dr. Lenke St. Louis Mo. T4 to sacrum osteotomy anterior cage L3/4 titanium rods
    May 30th 2013 revision
    May 8th cervicle surgery 2016
    May 31st Dr. Gupta revision 2017

  2. #2
    Join Date
    Mar 2010
    Posts
    2,755
    Why do you have to wait for a response from Dr. Perra to schedule with Lenke? I thought I heard that Lenke wasn't taking any more patients as of now. I would call his office with your story and see what they say. Best wishes!

    Rohrer01

  3. #3
    Join Date
    Jun 2011
    Location
    Southern CA
    Posts
    2,224
    I would , also, call Dr Lenke and see what he says.
    Melissa

    Fused from C2 - sacrum 7/2011

    December 8, 2014 - Another Broken Rod Surgery

  4. #4
    Join Date
    May 2010
    Posts
    345

    I agree with your responses!

    Malissa and rohrer1, I know what you're saying is right. I guess I'm following my local surgeons advise more than anything. I want to just get an appt. with Lenke. I think he takes on serious cases. His website sounds as though he's still doing surgery. And there's a lot of info. there. I just have my husband to take care of me. And he was taken a little a-back by the distance to St. Louis. Don't get me wrong , he wants this done, but he was thinking Minniapolis was a long trip, and he gets terrible nervous in the traffic. We're country bumkins. Although he is a terrific driver, in my opinion. All this aside, my quality of life is what I am praying for. But I have to be considerate of my husband too. He is the one that has to be there round the clock , waiting and wondering while I'm in surgery.(and I'v had a few) But he knows too I am deteriorating fast. I am only going to wait a few days . And I guess we're just wanting to see what Perra has to say. You know I don't know how long before he even reads the letter. It could lay on his desk forever. Who knows? So I need to get real. I have an aunt that passed away this week. But I can't put real clothes on anymore. Partley because of my 45 degree pitch forward, and partly because of the screw that's impinged around a nerve and pushing outward through my skin, making it impossible to wear anything because of the pain when the clothing hits the screw. It is excruciating and lasts for hrs. Oh my, I just keep talking in circles. And not making much sense to you, I'll bet. Thanks for replying . I will let you know how this turns out. So glad to have this place to come to. The people on here are truley the only ones that could understand. God Bless to you all~~~Linda(boomer16)
    Linda Brozik~~60 yrs. old at time of Lenke's first surgery. 62 now!
    Surgery 2006 L3/4 L4/5 double fusion/ instumentation/ With 2 cages
    This started adult onset scoliosis
    July 1st, 2010/ surgery ~~fused T10 to pelvis (long rods/ screws)
    Oct.20th 2010, extended rods to T4 / did osteotomy at L3
    Oct. 29th 2012 Dr. Lenke St. Louis Mo. T4 to sacrum osteotomy anterior cage L3/4 titanium rods
    May 30th 2013 revision
    May 8th cervicle surgery 2016
    May 31st Dr. Gupta revision 2017

  5. #5
    Join Date
    Mar 2010
    Posts
    2,755
    I know Lenke is still doing surgery. I thought I saw someone on here post that he wasn't taking any new patients right now because the wait time for surgery is getting soooo long. But maybe because your case is so severe, he might make an exception. I wouldn't wait a couple of days to call his office. Just call and see what they have to say. Tell them your most pressing problems and how desperate you are. Yes, it does seem like Lenke likes to take on the more challenging cases. He's very busy and leaves the less immediate cases to other doctors. Anyway, that's my take on what I've read about him on here.

  6. #6
    Join Date
    Aug 2011
    Location
    Indiana
    Posts
    104

    Travelling to St. Louis

    Quote Originally Posted by babyboomer16 View Post
    I just have my husband to take care of me. And he was taken a little a-back by the distance to St. Louis. Don't get me wrong , he wants this done, but he was thinking Minniapolis was a long trip, and he gets terrible nervous in the traffic. We're country bumkins. Although he is a terrific driver, in my opinion. ~~~Linda(boomer16)
    Linda,
    I understand your concerns that your husband has about traffic. Reassure your husband that negotiating the traffic around Barnes Hospital and the Center for Advanced Medicine where Dr. Lenke's office is located is a lot less stressful than many places. It is right off of I-64 and everything is clearly marked. Prior to my own surgery, I would drive from Indiana to the Center for Advanced Medicine with my son who had his post-surgery appts in that same location. I hope that you are able to see Dr. Lenke soon.
    Donna
    Female - 49 yrs old at surgery
    Surgery 5/5/11 - Dr. Bridwell, St. Louis
    Fused T3-L3
    60 degree thoracic curve corrected to 30 degrees
    Tennis player & returning to the courts!
    http://s1050.photobucket.com/profile/walkingmom1/index

  7. #7
    Join Date
    May 2010
    Posts
    345

    Thanks-you~~

    Quote Originally Posted by walkingmom View Post
    Linda,
    I understand your concerns that your husband has about traffic. Reassure your husband that negotiating the traffic around Barnes Hospital and the Center for Advanced Medicine where Dr. Lenke's office is located is a lot less stressful than many places. It is right off of I-64 and everything is clearly marked. Prior to my own surgery, I would drive from Indiana to the Center for Advanced Medicine with my son who had his post-surgery appts in that same location. I hope that you are able to see Dr. Lenke soon.
    Donna
    I am grateful for your information. I wrote it down so we'd have it! I am so ready to have this surgery. I realize it's a long dangerous surgery, and this is the third try to fix this problem, but if my health keeps declining because of my condition, that's not good either. I take quite strong pain meds,but they're not working well~~~Thank-you again~~Linda
    Linda Brozik~~60 yrs. old at time of Lenke's first surgery. 62 now!
    Surgery 2006 L3/4 L4/5 double fusion/ instumentation/ With 2 cages
    This started adult onset scoliosis
    July 1st, 2010/ surgery ~~fused T10 to pelvis (long rods/ screws)
    Oct.20th 2010, extended rods to T4 / did osteotomy at L3
    Oct. 29th 2012 Dr. Lenke St. Louis Mo. T4 to sacrum osteotomy anterior cage L3/4 titanium rods
    May 30th 2013 revision
    May 8th cervicle surgery 2016
    May 31st Dr. Gupta revision 2017

  8. #8
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,795
    Quote Originally Posted by babyboomer16 View Post
    Malissa and rohrer1, I know what you're saying is right. I guess I'm following my local surgeons advise more than anything. I want to just get an appt. with Lenke. I think he takes on serious cases. His website sounds as though he's still doing surgery. And there's a lot of info. there. I just have my husband to take care of me. And he was taken a little a-back by the distance to St. Louis. Don't get me wrong , he wants this done, but he was thinking Minniapolis was a long trip, and he gets terrible nervous in the traffic. We're country bumkins. Although he is a terrific driver, in my opinion. All this aside, my quality of life is what I am praying for. But I have to be considerate of my husband too. He is the one that has to be there round the clock , waiting and wondering while I'm in surgery.(and I'v had a few) But he knows too I am deteriorating fast. I am only going to wait a few days . And I guess we're just wanting to see what Perra has to say. You know I don't know how long before he even reads the letter. It could lay on his desk forever. Who knows? So I need to get real. I have an aunt that passed away this week. But I can't put real clothes on anymore. Partley because of my 45 degree pitch forward, and partly because of the screw that's impinged around a nerve and pushing outward through my skin, making it impossible to wear anything because of the pain when the clothing hits the screw. It is excruciating and lasts for hrs. Oh my, I just keep talking in circles. And not making much sense to you, I'll bet. Thanks for replying . I will let you know how this turns out. So glad to have this place to come to. The people on here are truley the only ones that could understand. God Bless to you all~~~Linda(boomer16)
    Linda...

    I don't understand why they don't at least take out the screw that is causing such pain. Has that question been addressed?

    --Linda
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Dilbert
    I'm sarcastic... what's your super power? --Unknown
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    If you've signed up and are having trouble posting, please check your spam folder. An email was sent to the email address which you subscribed. You have to follow the instructions in that email. Done that and still having trouble posting? Contact Joe O'Brien at jpobrien@scoliosis.org.

  9. #9
    Join Date
    Mar 2010
    Posts
    2,755
    I wondered the same thing. I think she explained that the doctor she's seeing now didn't want to operate to take the screw out because it could all be done at once. Is that correct, Linda? I might push for the screw removal with a qualified surgeon just for that part, so the screw doesn't completely come through the skin, which would open you up for infection, I would think. I hope you get some kind of resolution soon.

    Rohrer01

  10. #10
    Join Date
    May 2010
    Posts
    345

    Reason why~~~

    Quote Originally Posted by LindaRacine View Post
    Linda...

    I don't understand why they don't at least take out the screw that is causing such pain. Has that question been addressed?

    --Linda
    I guess his reasoning is possible infection, and he said the incision would have to be quite long to get it out , which is extra scar tissue for the next surgeon to deal with. They tried to make a foam donut hole type foam rubber thing to put over the screw, so if I happen to bump it, it won't break through. But I am having trouble keeping it in place. The shape of my back and position of the screw makes it tough. When I saw Perra in in Feb. the screw was pushing against my skin at that point and causing lots of pain. But he chose to send me home and then wrote to me and said three mo. wait . But he really didn't say if he didn't like the next dexa-scan reading, what then? And then, a few weeks later, I saw the local surgeon because the pain was too much. And when because I HAD that much pain , I had to wonder how Perra expected me to take it. The local surgeon did send Perra a medical report explaining why I was there. But he told me that it wouldn't do any good to out and out tell Perra to do the surgery right away (coming from another surgeon isn't a good thing.) Anyway, that's his the reason why. Keep you updated~~Linda
    Linda Brozik~~60 yrs. old at time of Lenke's first surgery. 62 now!
    Surgery 2006 L3/4 L4/5 double fusion/ instumentation/ With 2 cages
    This started adult onset scoliosis
    July 1st, 2010/ surgery ~~fused T10 to pelvis (long rods/ screws)
    Oct.20th 2010, extended rods to T4 / did osteotomy at L3
    Oct. 29th 2012 Dr. Lenke St. Louis Mo. T4 to sacrum osteotomy anterior cage L3/4 titanium rods
    May 30th 2013 revision
    May 8th cervicle surgery 2016
    May 31st Dr. Gupta revision 2017

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