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Thread: Yacpatty - One Year Post-op Dilemma

  1. #1
    Join Date
    Apr 2012
    Location
    Harrisburg, Pa.
    Posts
    85

    Yacpatty - One Year Post-op Dilemma

    Hello Everyone,

    This is Patty from Harrisburg, Pa. I wanted to give you a report since last being on the forum which has been many months ago. I have wondered how so many of you were doing but my life took a little detour this year and my husband and I have been swamped with Power of Attorney responsibilites. My cousin in Virginia went missing last Veteran's Day when he returned alone to a hiking trail he and a friend had hiked the day before. He returned to the trail in hopes of finding his lost cell phone from the day before. Since he went alone, no one knew he was missing until two days later when he did not report to work. There have been numerous searches with volunteers statewide, helicopter and equesterian searches, dogs from search and rescue teams and friends who have gone back to the mountain 4 additional times. A fifth search is scheduled December 1 on a treacherous part of the mountain where it is believed he could have become lost and confused. He leaves behind my 92 year old aunt and I am also her POA. It has been quite a year.

    I want to give you my one year post-op report. If you forgot, I am 62 and at the age of 13 had a T4-L2 fusion for congenital scoliosis. I traveled back and forth to St. Louis and had surgery with Dr. Bridwell. We went round and round about whether to only fuse L4-L5 that had the most pathology or start at L2-L3 and go down to the sacrum. He contended there was not enough pathology in the L2-L3, L3-L4 and L5-S1. Dr. Bridwell is a very conservative surgeon but here I am a year later with the same nerve pain in my bilateral legs and groin area as before the surgery. I want to give you my MRI report findings which he says radiologists tend to over-read the films.

    L2-L3 MILD BILATERAL FACET ARTHOPATHY, MILD RIGHT NEURAL FORAMINAL NARROWING
    L3-L4 MODERATE BILATERAL NEURAL FORAMINAL NARROWUNG, MILD BILATERAL FACET ARTHOPATHY
    L4-L5 DR. BRIDWELL DECOMPRESSED AND FUSED THIS SEGMET
    L5-S1 MODERATE LEFT FACET ARTHROPATHY AND MY MRI REPORT FROM HARRISBURG WHICH HE PAID LITTLE ATTENTION SHOWED SEVERE LEFT SIDED
    NEURAL FORAMINAL COMPROMISE AND ANOTHER REPORT SHOWED COMPRESSION OF EXITING LEFT NERVE ROOT

    Here is my dilemma. My one year check up is December 9. I have emailed his office telling them of the continued nerve pain in my legs and asking for an MRI. For the past year, Dr. Bridwell has paid no attention to my complaints of leg and groin nerve pain. He says groin pain does not come from the spine. My research says it comes from L2-L3. He will not entertain the idea that he should have done L2-sacrum and this was his INITIAL GAME PLAN. He changed his mind on my second pre-op visit. He knew I wanted the L2-sacrum decompression and fusion.

    What do I do? What do I say to this top notch surgeon who wont pay any attention to my nerve pain and says he doesn't know where it is coming from. Am I deaf, dumb and blind here? I feel like an idiot with my complaints but you can see my MRI findings and here I lay on the couch with ice on and my legs feeling tight and extremely painful. I am curious to see if I fused at L4-L5 and he used BMP to enhance fusion. I did very well immediately after surgery but once I reached that 30-45 minute standing or sitting mark, the nerve pain set in and increased tremendously until I rested, iced and medicated.

    Thank you for taking the time reading this. Do any of you have any advice or just encouragement. Ironically, if he thought another surgery was needed, I would go back to him. I WOULD prefer going to a top notch surgeon loser to home. Any suggestions there? I HOPE TO HEAR FROM YOU and look forward to checking up on all of you since last being on here.

    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.

  2. #2
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,213
    Hi Patty...

    Sorry to hear that you're not doing better. My advice would be to wait and see what Dr. Bridwell says in a few weeks. Surgeons are reluctant to do anything so soon after an initial surgery, since so many of these things resolve on their own. While groin pain can be from a nerve root, it's more likely generated by the hip. Dr. Bridwell may have wanted to just see how things shake out. I hope he pays attention to your complaints in December. If not, you'll either need to find a new surgeon, or start getting more demanding with the one you have. Neither one will be easy.

    Regards,
    Linda

    P.S. While you're disappointed that Dr. Bridwell didn't stick with his initial plan, I'm guessing that he really wanted to do what he thought was in your best interests. He probably feels that, in his hands, patients such as yourself usually get away with less surgery. Unfortunately, as you know, there are no guarantees.
    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

  3. #3
    Join Date
    Dec 2012
    Posts
    18
    Patti

    I am so sorry about your cousin, I just said a prayer for him.

    Just because a surgeon is famous, it does not mean that they do not make errors in judgement and even big mistakes. Unfortunately, because of their legal liability, no doctor will ever say,"Oh gosh, I made a mistake. Sorry, I should have done the complete surgery before." Instead, most of them will try to say something has changed since they performed the surgery. This lets them off the hook.

    If you can afford it, why don't you get a second opinion? Hopefully you will be able to find a surgeon who listens to you. I am very sorry you are gong through this.

    Best of luck.

  4. #4
    Join Date
    May 2010
    Posts
    236

    Omg! How sorry I am!

    Hi Patty,
    First let me say how sorry I am about your cousin. What an awful thing to happen. A nightmare to say the
    least. We never think things like this can happen to our own families.but it happened to yours and you must be completely sick about it. You have got to be exhausted going through all of this and still putting up with excruciating pain. Oh my Patty! I feel so bad for you. I don't know if I would have the strength to argue with my surgeon. But I don't know what I'd do. I know you were counting on this surgery sooo much to do the job. How disappointing that it didn't work. I know that my mom had groin and leg pain. She had spine surgery to decompress L2L3. The pain was caused from pressure on those vertebrae. She was in terrible pain. But much better now. I remember how upset you were at your last checkup. I think "moonglow" was right on. Have you been in touch with Dr. Bridwell since you saw him last? Just to keep him updated on how you feel? I hope by the time you get there he has a plan that will fix you and help get rid of that pain! I know what terrible pain is like. It wears a person down till you feel hopeless. I was in St. Louis last week for my six month checkup. Dr. Lenke doesn't see his patients at six months. I saw one of his "fellows". I was told my rods look good and my plumb line looks good. But I still have a lot of pain right above my buttock on both sides, and it is swelled there. He said that's where the iliac bolts are . Dr. Lenke will remove them at two years if they are still bothering the patient. But he doesn't think Dr. Lenke will want to take mine out. I have developed extreme muscle spasms in the past couple months. He wants me to do some excersises to maybe help. I still have a ways to go. But I am better than I was by far, before I went to Dr. Lenke. I hope in the next six mo. it gets lots better in a few areas.
    Please know I'm thinking of you and praying for an answer to your dilemma. And God Bless your family going through this terrible thing with your cousin. Warmly, 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
    Am awaiting surgery with Dr. Lenke(Oct. 29th,2012) at Washington University in St. Louis, Mo. He will fix my saggital imbalance.

  5. #5
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    2,756
    Wow Patty!

    I agree with Linda on waiting till your Dec meeting. Face to face is a much more effective form of communication. If he elects to do nothing, then move on. Im so sorry about this, you were really hoping to get this all over with last year. Also sorry about your cousin, having this added stress isnt helping.

    Deep breaths
    Ed
    49 yr old male, now 55, the new 39...
    Pre surgery curves C12,T70,L70
    A/P 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

  6. #6
    Join Date
    Jan 2012
    Location
    Yacolt, WA
    Posts
    1,138
    Patty, so sorry about your cousin. That must be awful to not know what happened.

    First of all, I believe you when you say that you are in pain. I hope that you find relief. You need to have confidence in your surgeon, so it may be time to move on.

    I had surgery to remove some nodes in my neck which turned out to be benign. About one month after my surgery, I noticed that my arm could not move in one direction. I called her and she said that it would get better. I saw a PA who ordered a nerve conduction study....that's a lot of fun, in case anyone ever recommends one. When they connect the electrodes and you scream, then it's OK. When they connect the electrodes and you don't scream, then the nerve is not intact. Well, my L ancillary nerve was apparently cut during surgery as there is a way that I cannot move my arm. It's OK because I can compensate by using other muscle groups. I showed her the report and the lack of movement and she said, "I was not near that nerve". I told her that I heard what she said, but that my arm moved fine before surgery and now it does not move in a certain direction. I said that it was OK with me, I just want to tell her. Then she said, "Well, I guess that if it was not like that before surgery, then it might have happened in surgery". That was the best that she could come to an apology. It would have been nice if she had said, "I'm sorry". That's all that would have been nice . Didn't get that. Still to this day, 10 years later, of course the nerve never grew back and my arm does not move in one direction. It's OK with me, but I still think that her response was a bit unusual.

    I just hope that you can find something that can help your pain so that you can have a better life. I wish you well and please keep in touch.

    Hugs, Susan
    Dxed 8/2011: Degenerative Adult-Onset Scoliosis age 65
    XRAY 1/2012: 25* T levoscoliosis/ 36* L dexroscoliosis w/ 4.1 cm coronal & 3.5 cm sagittal balance
    XRAY: 12/2012: Scoliosis curve same, Coronal Balance increased to 11.2 cm. T kyphosis 90 degrees
    Severe disc degeneration thoracic & lumbar, stenosis esp L4
    Surgery: T3 to S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 in 2 surgeries,
    19 & 22 March 2013, Dr. Serena Hu @ UCSF
    Postop incisional hernia @ ALIF incision, repaired 3/2014

  7. #7
    Join Date
    May 2012
    Location
    El Centro, CA & Baja California, Mexico
    Posts
    156

    Did you not call Dr Bridwell?

    Hi Patty,
    I came out of the surgery a week or two before you. I know that Dr. B is pretty hard to pin down. What he says to you in consult is minimum and I always ask to see a copy of the office visit notes. My back is OK basically and inherited a slightly numb left kneecap and poor circulation down that leg.

    Having to live with the extra pain this year is no fun. I don't know if I were to need another intervention if I would chose to do the entire thing or part of that experience although it was not a a bad one. I really feel for you.

    Did you call and talk to Bernie? keep insisting. Have you talked to Dr Bridwell? He should convince you that your pain is coming from another source or tell you that he does not know how to fix your pain instead of disagreeing with you. Would a nerurologist help determine if DR B. does not think it is the spine? Seems to me related to nerve endings... Ask for a consult in advance since you are going to be there. Don't wait. He operated on me with an attending neurologist because he anticipated a dural leak. Ask him to explain where your pain is coming from?

    good luck!
    Gardenia
    Live in Baja California, Mexico & El Centro, Ca
    pre-surgery currve 75 above and 89 below
    Surgery: Dr. Bridwell Nov 27, 2012 @Barnes Jewish @62yrs
    Correction from T11 to Sacrum Dural leak at L2 & L3
    Diagnosed 2013 with Cronkhite-Canada Syndrome
    email: ccmail4g@gmail.com

  8. #8
    Join Date
    May 2010
    Location
    Indianapolis area
    Posts
    964
    Party,

    I'm sorry about your cousin and will hope for a miracle for your family.

    Regarding your pain, remember that the surgeons always say there is no guarantee of reduced pain. But that doesn't mean you shouldn't try for it! If Dr. Bridwell does not address it at your next appointment, why don't you see Dr. Boachie or another expert in NYC? That's actually closer than St. Louis, isn't it?

    Best wishes,
    Evelyn
    age 41
    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.

  9. #9
    Join Date
    Apr 2012
    Location
    Harrisburg, Pa.
    Posts
    85
    Hi all.....They are scheduling an MRI for me on Dec 9. I am currently spending 10 days with my mother in Virginia and I am still gabbing so much nerve pain in my legs...also burning sensations. Appreciate your prayers!!!!

    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.

  10. #10
    Join Date
    Jan 2012
    Location
    Yacolt, WA
    Posts
    1,138
    Patty, that has to be awful! So sorry and hope that you find some answer with testing.
    Susan
    Dxed 8/2011: Degenerative Adult-Onset Scoliosis age 65
    XRAY 1/2012: 25* T levoscoliosis/ 36* L dexroscoliosis w/ 4.1 cm coronal & 3.5 cm sagittal balance
    XRAY: 12/2012: Scoliosis curve same, Coronal Balance increased to 11.2 cm. T kyphosis 90 degrees
    Severe disc degeneration thoracic & lumbar, stenosis esp L4
    Surgery: T3 to S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 in 2 surgeries,
    19 & 22 March 2013, Dr. Serena Hu @ UCSF
    Postop incisional hernia @ ALIF incision, repaired 3/2014

  11. #11
    Join Date
    Apr 2012
    Location
    Harrisburg, Pa.
    Posts
    85
    Hi Friends,

    Finally heard from St. Louis......Dr. B's assistant told me he now wanted an MRI of my sacrum. She did not know why. Upon receiving a copy of my December 9 lumbar MRI done in St. Louis, my L3-L4 neural foraminal stenosis has gone from moderate to severe and there is soft dense tissue on my S1 nerve root possibly from the L4-L5 laminectomy. Am I frustrated? Understatement. Are you telling me that this bilateral leg pain could not be coming from this severe stenosis. I am not even surprised about the S1 nerve root BECAUSE I have had several MRI reports over the years to say that he S1 nerve root was compressed. Yet, Dr. B DID NOT KNOW WHERE THIS PAIN IS COMING FROM!!!!! What am I missing here? Now there is also a finding of this tissue being on the nerve root and I am assuming maybe this is why Dr. B has ordered the sacrum MRI. That is scheduled this Friday January 10. I will let you know my results and Dr. B's comments and recommendations. COMMENTS OR ADVICE??? Being on my feet for any prolonged period of time brings on burning nerve pain in both legs. Although frustrated, I still trust Dr. B with spinal surgery.

    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.

  12. #12
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    2,756
    I cant blame you Patty....I know I would be a tad raspy about this.....burning nerve pain is not King Kong, its Godzilla with a full tank of gas.

    It might be wise to lay real low till a decision is made. Stay off your feet.

    I always used hot water for the Godzilla type pain. It was the only thing that worked. 106F

    Ed
    49 yr old male, now 55, the new 39...
    Pre surgery curves C12,T70,L70
    A/P 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

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