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Thread: What a mess!

  1. #31
    Join Date
    Aug 2010
    Posts
    42
    God is startin my day off right! Just got a phone call from Dr. Heys office regarding my calls and emails about revision surgeries.
    She stated "Doc. Hey has done many, many, many revision surgeries". So thank you Lord now I don't have to stress that I threw away good money on a planed ticket.

  2. #32
    Join Date
    Jan 2008
    Location
    NC
    Posts
    8,901
    Quote Originally Posted by scuba steve View Post
    God is startin my day off right! Just got a phone call from Dr. Heys office regarding my calls and emails about revision surgeries.
    She stated "Doc. Hey has done many, many, many revision surgeries". So thank you Lord now I don't have to stress that I threw away good money on a planed ticket.
    If you read his blog, you can see he does many many many revisions. :-)

    http://drlloydhey.blogspot.com/

    There is no obvious reason why Dr. Hey isn't a good choice at this point. I hope he helps you.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  3. #33
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    3,534
    Steve

    You are on the right track....try to relax and take it easy if you can right now.

    It wont be long now....

    Ed
    49 yr old male, now 58, the new 53...
    Pre surgery curves C12,T70,L70
    ALIF/PLIF T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  4. #34
    Join Date
    Jun 2011
    Location
    Southern CA
    Posts
    2,224
    Quote Originally Posted by scuba steve View Post
    I am nervous now that he doesn't do revisions? Someone suggested he may not. I pray he does as I have already got my plane ticket and getting ready with hotel room.
    I told his secretary that i had 3 breaks in hardware and whatnot so I would assume she would have said " he doesnt do that kind of surgery" right?
    I mean if he doesn't then we just wasted a plane ticket, and we cannot afford to do that.
    Does anyone know if he does do revisions? I have e-mailed his office again and left voicemail so we will see.
    Thanks to all for your kind words and support I felt a new breeze of fresh air in my heart yesterday.
    Pray that Doc. Hey does do revision work though and not just first spinal surgeries!!!!
    Dr Hey does both first surgeries and revisions. I went to him for a revision surgery opinion. If I were still in NC, I would have gone to him for my revision surgeries. He will do anything that he can to help you.
    Melissa

    Fused from C2 - sacrum 7/2011

    December 8, 2014 - Another Broken Rod Surgery

  5. #35
    Join Date
    Jan 2012
    Location
    Yacolt, WA
    Posts
    1,525
    Quote Originally Posted by scuba steve View Post
    I am nervous now that he doesn't do revisions? Someone suggested he may not. I pray he does as I have already got my plane ticket and getting ready with hotel room.
    I told his secretary that i had 3 breaks in hardware and whatnot so I would assume she would have said " he doesnt do that kind of surgery" right?
    I mean if he doesn't then we just wasted a plane ticket, and we cannot afford to do that.
    Does anyone know if he does do revisions? I have e-mailed his office again and left voicemail so we will see.
    Thanks to all for your kind words and support I felt a new breeze of fresh air in my heart yesterday.
    Pray that Doc. Hey does do revision work though and not just first spinal surgeries!!!!
    If you are concerned about the kind of surgery that he does, read his blog whose Internet address was posted. He has done lots of revisions. From his blog, he seems to be very open and honest. There seem to be very few personable surgeons as that is not their style in general.

    I do not think that you are wasting your time. If when you see him, you are 100 percent sure that he's your surgeon, then go with it. If you want another opinion, maybe try Dr. Lenke. I have not seen him either, but he also comes highly recommended for revisions.

    You are taking action which is awesome! You I are on your way to decreased pain!
    Susan
    Adult Onset Degenerative Scoliosis @65, 25* T & 36* L w/ 11.2 cm coronal balance; T kyphosis 90*; Severe disc degen T & L stenosis

    2013: T3- S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 in 2 surgeries
    2014: Hernia @ ALIF repaired; Emergency screw removal surgery for Spinal Cord Injury at T4,5 sec to PJK
    2015: Revision Broken Bil T & L rods and no fusion: 2 revision surgeries; hardware P. Acnes infection
    2016: Ant/Lat Lumbar diskectomy w/ 4 cages + BMP + harvested bone + prayer

  6. #36
    Join Date
    May 2010
    Location
    Indianapolis area
    Posts
    966
    Steve,

    That was me--sorry, I just didn't know whether he did them. Didn't mean to suggest he didn't. Just thought you should make sure. I subsequently checked his website and also found the same answer that everyone else has given you--that he does. So, yes, it looks like you are headed in the right direction!!! Sorry if I got you worried for no reason.

    Best,
    Evelyn
    age 44
    80* thoracolumbar; 40* thoracic
    Reduced to ~16* thoracolumbar; ~0* thoracic
    Surgery 3/14/12 with Dr. Lenke, T4 to S1 with pelvic fixation
    Not "confused" anymore, but don't know how to change my username.

  7. #37
    Join Date
    May 2010
    Posts
    345
    Hi scuba Steve,
    I just saw your post and I just felt terrible sorry for what you're going through. It sounds familiar, as I had three surgeries before I found Dr. Lenke. Each surgery I got worse! I was in terrible pain and my upper body was bent over fifty percentage to the front. I couldn't look up without difficulty. I was sent to the Twin CitySpineCenter first. That surgeon kept saying if he did surgery I may end up in a wheel chair. Needless to say I didn't go back. Finally I kept seeing Dr.Lenke's name on this web site. I may add I live in So. Dak.
    But I called his office anyway. The nurse told me he only took the most serious cases. I sent my records, and within two weeks she called me to set up a consultation the next month. I was so happy!! At the consultation he said "I can fix you". I was elated. But, that was May of 2012, and he couldn't do the surgery till Feb. 13th of 2013. Ugh! But as luck would have it, there was a cancelation and my surgery was moved to Oct29th of 2012. I was relieved! It all went very well. It took ten hours to fix me. But I'm here to tell you I am a new person. It is a twelve hr. drive for us, but worth every mile. I'm fused from T2 to sacrum. I want you to know I'm not telling you you should go to Dr. Lenke, I just wanted to make the point that sometimes we have to sacrifice to have the best. It was costly for us as far as rooms and gas. My husband stayed in the hotel all the while I was recuperating. I don't know much about Dr. Hey, but it sounds like he has a great reputation.I think you are on the right track. My heart goes out to you and I will keep you in my prayers as you go through this. Good Luck~~~ Warmly, Linda. PS. I said my husband stayed in the Hotel all the while I recuperated, but he was in the hospital room with me most the time. (smiles) I thought I should clarify I didn't lock him in the Hotel room! Ha!Ha! Also, we have a son that lives in Lawrence Ks., so we could stop and rest a night there , then on to St. Louis. That helped a lot. You have to go for what makes you feel right. You'll know. I felt at 60, I didn't want to make another mistake on surgeons. (Or at any age) but you know the body doesn't jump back into shape as fast the older you get. Well my PS.turned into a another book. sorry! Just hang in there! I hope your pain is better today. I lived with pain for yrs. and it steals everything away! God Bless~~~
    Last edited by babyboomer16; 02-09-2013 at 10:41 AM.
    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. #38
    Join Date
    Aug 2010
    Posts
    42
    Evelyn do not apologize! You were just trying to help, and i thank you for that!
    Been busy with making the appt. and getting a room and flight and what not. Praying I mean PRAYING that Dr. Hey is gonna give me some hope one way or another. This is a big deal for us like I said earlier we are a working class family with 4 kids an flying to see doctors is not in our budget. If it doesn't work out with Dr. Hey then I may have to sell a kid to go see another one
    I want to thank each and every one of you for your kind words, inspriration and words of hope. Mentally i am still in the fog but for now i have a glimmer of hope again.
    Seen my pain mangemnt doc yest. who was flabergasted that I had all this wrong with my hardware and he wants to see me as soon as i get back in town.
    please keep the prayers coming.
    will be leaving next mon. and won't be home till wed. late from N.C.
    Thanks again to all and sure i will be speaking to you before i leave.
    Steven

  9. #39
    Join Date
    Jun 2011
    Location
    Southern CA
    Posts
    2,224
    I am sure that Dr Hey will be able to help you. As I said if I were to have surgery in NC, I would have chosen Dr Hey without a second thought.
    Melissa

    Fused from C2 - sacrum 7/2011

    December 8, 2014 - Another Broken Rod Surgery

  10. #40
    Join Date
    Apr 2012
    Location
    Harrisburg, Pa.
    Posts
    85
    Hi Steve,

    I see that you are getting lots of thumbs up for Dr. Hey. I was going to send you information from Dr. Hey's websites but just google him and you will see many miracles performed by him. Steve, I will be praying he is your miracle...I feel good about this. We will all be waiting for your return from your Feb 19th appt. to see how your appt went.

    Prayers and blessings,
    Patty
    1963 Fusion T4-L2 for congenital scoliosis. It was a bone graft and not instrumentation
    1989 to Present....Have had chronic pain. MRI's show severe neural foraminal stenosis L2-S1, rotational scoliosis lumbar spine over 40 degrees, compression of nerve roots L5-S1, Broad Based Herniations L4-L5, L5-S
    Surgery scheduled with Dr. Bridwell on December 11, 2012
    December 11, 2012 Had surgery with Dr. Bridwell. He fused L4-L5 with rods and screws.

  11. #41
    Join Date
    Oct 2008
    Location
    Sunshine Coast, Queensland, Australia
    Posts
    3,261
    Good luck Steve! It's an expensive business, but a great investment in your future. Looking forward to hearing how it goes.
    Surgery March 3, 2009 at almost 58, now 63.
    Dr. Askin, Brisbane, Australia
    T4-Pelvis, Posterior only
    Osteotomies and Laminectomies
    Was 68 degrees, now 22 and pain free

  12. #42
    Join Date
    Jan 2013
    Location
    Willington, CT
    Posts
    10

    Don't lose hope!

    Quote Originally Posted by scuba steve View Post
    Ok here I am AGAIN!
    I had original surgery in 2005 fused from t-4to l-4. and rods implanted. Pain was 10x worse since my surgeries. Went thru pain meds, stimulator and then the pump, none helped.
    Finally went to see a surgeon on the west coast of fl. who said pain was possibly caused from area in the lower back that was not fused. So after some investigation and alot of questions we had him do a second operation where i was fused rest of the way down to s-1 and had the pelvic anchors put in.
    Well that again didn't do the trick. So I went to another pain managment doctor who said they took the pump out before they should have and "he can make it work if I do it again". Guess what i have the pump in again and still no relief. We have tried numerous drugs in the pump and have even started to mix them in order to see if anything will work.
    Well in this time frame my wife and I started to notice some noise coming from my back when i layed down (the only position that gives me some relief) and made an appt. with my local ortho surgeon to get some pics. This doc is great but told me from the first time i saw him over 4 yrs. ago that he would not do any surgery's on my back. He felt the risk way outweighed the rewards.
    I just got back from his office where i was informed that i have to broken areas in my rods of the left side and one on the right with a posible fracture starting on that side also. When asked what i should do he stated that he doesn't know!
    I am in so much pain now and loosing all hope. I now am fused from T-4 to sacrum with the pelvic anchors in, and yeah can't forget the pump.
    Loosing all hope, don't know where or who to turn to. Getting depressed and bad ideas in my head. Thank God for my wife and children who up to this point have kept me going. I am only 43 yrs. old and being told that I need to go on disibility and "they will try to keep me comfortable". What kind of life is that!?
    Any and all help will be appreciated, anyone out there been here?



    My rods broke about a year and a half after my fusion surgery. The doctor wanted me to wait as long as possible before going in again, to allow the bone to fuse. The rods themselves are just scaffolding to hold the spine in place until the bone fuses. You don't really need them once the fusion is solid. When I had my next surgery, the doctor didn't have to put new rods back in! Since your fusion surgery was so long ago, there's a very good chance you would be able to simply take the rods out. And given your age, it's also very likely that the back is stable now and will not move, meaning you could be rod-free! I was rod free for 5 wonderful years! Unfortunately, for me, my back moved again, requiring a re-fusion. But my situation was different from yours because I was also at an age when I was more at risk for the scoliosis to continue. My second fusion has been very successful.

    Please don't give up. Not only am I a scoliosis patient, but I am also a mind/body therapist (and former personal trainer) helping clients deal with chronic pain, disability and stress. There are many things you can do to help deal with your pain and get your body more comfortable -- water therapy, meditation, Reiki, reflexology, massage. . .all these things work.

    But first, you need to find a surgeon who understands scoliosis. If your doctor doesn't know what to do at this point, then run from him, fast! Not sure where you're located, but you may want to find a teaching hospital. They are usually forward-thinking. But it sounds like a clear case of removing the rods. And then you can begin the process of regaining strength, mobility and peace.

  13. #43
    Join Date
    Aug 2010
    Posts
    42
    Thank you very much for positive feedback. I have to admit that I am trying to NOT get excited about the option of hardware removal but I am.
    I think that would end this entire nightmare but I have been told that some docs do not like to take the risk of removal.
    I will be leaving in moring for my trip to N.C. And ask that all please pray for me and Dr. Hey.
    Will advise on what is decided when I return on Wed.
    Thank you all once again, u helped pull me through a few weeks when I didn't know if I could take anymore of this.

  14. #44
    Join Date
    Jan 2008
    Location
    NC
    Posts
    8,901
    Good luck Steve. If you read Dr. hey's blog, you will see he is very much like you. I hope this helps you through.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  15. #45
    Join Date
    Jun 2011
    Location
    Southern CA
    Posts
    2,224
    Hope all goes well
    Melissa

    Fused from C2 - sacrum 7/2011

    December 8, 2014 - Another Broken Rod Surgery

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