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  1. #1
    Join Date
    Oct 2010
    Location
    Bend, Oregon
    Posts
    265

    Revision in my future...

    Hi everyone, it's been a long time. I stayed with the forum for a few years, then got busy with life, work and play. I was a bad girl- and I'm sorry! Now I'm back. Those of you may remember me as someone who had an amazingly uncomplicated, quick recovery-and was long winded and wrote super long posts! I felt like a poster child for scoliosis fusion surgery. But there have been little shadows of doubt lurking in my head for quite some time now. I have been having lots of issues with flatback syndrome and I am considering revision surgery.

    This is so disappointing. I did so well with the recuperation, and I had such high hopes for a return to some sense of normalcy. I am still a positive person, so I still look at the surgery as a plus. The surgery did completely eliminate the sciatica and that "crushed" feeling I had in my torso from my ribs sitting on my pelvis. After the first year and a half of recuperation, I didn't really have any pain in the spine, as far as nerve pain or aches. But I have had a loud audible squeaking, creaking sound from the beginning that the doctor dismissed and told me it really wasn't possible. At one of my early follow-up appointments, I mentioned that I couldn't walk upright, and that the strain was putting immense pressure on my upper back. I have almost continual spasms trying to support my forward pitch. They get knotted up so tight sometimes that I can hardly move. It is almost worse than the sciatica was, prior to surgery. All she told me was that I would have to crouch and walk with my knees bent from now on. I was very disappointed at her lack of wanting to acknowledge there was something going on, and maybe offering some suggestions of PT or maybe even the possibility of a revision. What about my knees for the rest of my life? I can't walk in the squat position for the next 30-40 years without some sort of long term damage.

    The spasms have gotten so bad lately that I can't walk more than a few yards without my back cramping up. I've gotten creative when we go somewhere by wearing a backpack loaded down with weight to help counterbalance my forward pitch, and I use trekking poles to lean on and help take off some of the pressure. You should see the dirty looks my hubby gets when people think he is letting his obviously challenged wife carry the backpack! It does help some, but I've gotten to where I don't walk anywhere unless I have to. And I used to be so active! I hesitate to go to any concerts or events if it involves a long walk. And I miss my previous life. I was more active prior to surgery than I am now- even with the sciatica. I've gained 25 pounds, which I've never been able to do in my life, even when I tried to! I've turned into the couch potato (or computer chair potato!) that I've never wanted to be.

    Lately I've also been experiencing shoulder pain and numbness and tingling down my right arm. I wondered if it is posture related and not from the actual fusion. I finally decided to try one more time and went to see the PA, since she seemed more concerned than the doctor does. She finally heard the squeaking, as it has gotten quite loud. You can hear me squeak across a room. She looked up at me with the funniest look on her face. She said "Well, that changes my opinion on things!" She ordered a bone scan, which she said showed non-fusion and loose hardware in the lumbar region. All they offered was an injection into the area of a loose screw to help with pain. Recently, my mom has been diagnosed with arachnoiditis. This is a debilitating condition, and the doctor told her there is some evidence of the injections causing damage to the lining of the nerve bundles- so I passed, and went home and made an appt. with Dr. Hart at OHSU. ( For more info, go to http://www.spineuniverse.com/conditi.../arachnoiditis )

    I saw Dr. Hart for the first time on Tuesday, and I feel pretty comfortable with him. I've put off going to him for the last two years, due to fear of not liking him. And to be honest- maybe a little bit of hesitance of going through surgery again! Someone I met had surgery with him a couple years ago, and had some negative things to say about him and OHSU. She felt that he was very arrogant, rude and dismissive, and that he did not listen to her concerns. Fortunately, my experience was very different. He was very caring and compassionate, and he took time to answer all my questions. I left feeling much better about him than I thought I would. I'm really nervous about going through this all over again, and I'm hoping she is just one of the small percentages of folks who have unsuccessful surgeries and bad hospital experiences. Everyone is different and has their own reality. And I know that most university hospitals are really busy and overworked so care can be a little lacking. I was spoiled with excellent care at St Charles in Bend for my first surgery. Leahdragonfly told me that OHSU has a new spine wing and she had much better care for her revision surgery. And she really likes and trusts Dr. Hart. Great news!

    Anyway, it did make me a little scared to make an appt with Dr Hart or to be involved with OHSU. But the only way I can afford to do another surgery is to go somewhere that is in-network with my insurance, and he is the most obvious choice in Oregon. Most of the other places I would consider are out-of-network and out of state, and my 40% coinsurance would be almost as much as my house loan! My first surgery was almost $250,000....40% would be $100,000. Wow. I don't have quite that much stashed in my mattress! My max out of pocket is $10,000, and I donít even have that. I'm not sure about what the out-of-network max I would have to pay. I would love to be able to go to SF or Twin Cities, but just canít afford to do so. It is so sad that our lives are put into hands of not necessarily the best surgeon, but the ones our insurance covers.


    I saw Dr. Hart on Tuesday, and they took more Xrays. Both the doctor I talked to first (he was from Japan-I didn't quite catch his name) and Dr Hart mentioned broken rods and flatback syndrome. I will get a CT scan next, then go from there. The good news is that he thinks the upper part of the fusion is in good shape, and he thinks he can go in with just one surgery for the A/P revision on the lumbar area only. I thought we would have to start over with a complete revision with the 2 separate surgeries. So I'm crossing my fingers... Dr. Hart said the shoulder pain and the arm numbness and tingling could very well be posture related, and he wants to wait and see if it disappears after the surgery. He wants to tackle just one thing at a time. We will know more after the CT scan.

    Unfortunately (or fortunately, however you choose to look at it!) I think we are going to put it off until next spring. Our daughter is going to study abroad in Spain this fall for her last term of college and she really wants us to come over for Christmas. I'm afraid I won't be healed enough for such a long flight if we do it now. Surgeries are being scheduled for at least 2 months out. And there is always that chance of having complications or even something going wrong and not ever being able to travel far distances again. It is a small chance, but still a reality I have to consider. So I think Spain is in the future, just in case. I won't be able to explore as much as I would like to, but you gotta grab life while you can!

    So that is where I am at. It is nerve wracking to consider going through it all again. But if it improves my posture and ability to function, it will be well worth it. I have too many good years left in me and things I want to do! If I were quite a bit older, I would consider just leaving it alone, but not at my age. We have several travel destinations planned for the future that I would really like to be able to enjoy and walk around and see the sights. I still want to hike, ski and mountain bike!

    MY RESPONSIBILITY IN THIS IS TO PASS ON MY LESSONS LEARNED SO THAT OTHERS MAY LEARN FROM IT, TOO. So here I am- back on the forum! The lesson in all of this is to go to a spine surgeon that only does these types of surgeries- and does a lot of them. My doctor trained at Twin Cities Spine Center, so I thought that was a great qualification. There was a write up on her in our newspaper about her non-profit organization that does free surgeries for low income children. She also had referrals from OHSU in the past, which I thought was another great reference. But she just doesnít do enough of these surgeries to be experienced in long, severe scoliosis fusions. She is a wonderful person, and had only the best intentions for me. But donít let these things sway your decision. It is not about personality or intent. Even if you think a surgeon is arrogant, or you donít like his bedside manner, experience and success are more important than these things. Find an experienced spine surgeon so that you donít have to go through another surgery like I will. There will be a lot more money out of my pocket and a lot more pain to go through. And Flatback Syndrome is avoidable in this day and age with an experienced surgeon. If I had some lordosis put in my spine in the original surgery, I would be in amazing shape and climbing mountains right now!

    Thanks so much, everyone, for being my shoulder to cry on. I appreciate the opportunity to vent! No one understands like someone who lives with scoliosis and has been through the surgeries and all the stuff that goes along with it. My husband is one of the most supportive, caring and understanding people I've ever known, but he still doesn't truly understand my frustrations and what it is like to live with it every single day. You guys do.

    I will keep everyone posted.
    Jenee'-52
    Bend, Oregon

    Braced 3 years in high school
    Lumbar 70'+ Thoracic 70'+
    I had 3" shrinkage in 6 months...

    Surgery Jan 10, 2011
    9 hours
    T3 to S1 with pelvic fixation
    Both curves now 35'

    Possible revison for Flatback Syndrome
    Non-fusion
    Loose/broken hardware-awaiting CT results

    Here is the link to my before and after pics..
    http://www.scoliosis.org/forum/showt......&highlight=

  2. #2
    Join Date
    Jun 2011
    Location
    Southern CA
    Posts
    2,224
    Welcome back


    Melissa
    Melissa

    Fused from C2 - sacrum 7/2011

    December 8, 2014 - Another Broken Rod Surgery

  3. #3
    Join Date
    Jan 2009
    Location
    Ames, Iowa
    Posts
    1,250
    Jenee'--
    I completely remember you & how well you did. I'm so sorry you are now having such difficulty. Your doctor's solution to walk "crouched" is just silly. That makes no sense at all. I hope Dr. Hart can get things fixed for you. Good luck! Janet
    Janet

    61 years old--57 for surgery

    Diagnosed in 1965 at age of 13--no brace
    Thoracic Curve: 96 degrees to 35 degrees
    Lumbar Curve: 63 degrees to 5 degrees
    Surgery with Dr. Lenke in St. Louis--March 30, 2009
    T-2 to Pelvis, and hopefully all posterior procedure.

    All was posterior along with 2 cages and 6 osteotomies.

  4. #4
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    3,531
    I cant believe it....When I saw you, you were doing great Jenee, it looked as if you were out of the woods....

    You have been hanging for 2 years now with broken hardware? wow!

    I sent you an e-mail, try to hang in there...

    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

  5. #5
    Join Date
    Apr 2012
    Location
    San Jose, CA
    Posts
    570
    Jenee,

    I remember reading your posts even though I joined the forum after you left. You were doing so well and were so supportive of others. So sorry to hear about what's going on...
    I am stronger than scoliosis, and won't let it rule my life!
    45 years old - diagnosed at age 7
    A/P surgery on March 5/7, 2013 - UCSF

  6. #6
    Join Date
    Jan 2008
    Location
    Oregon
    Posts
    1,160
    Dear Jenee,

    Like the others I am so surprised and sorry to hear of your flatback and pain now. You made all of us a little jealous with your easy recovery (just kidding but you know what I mean)! I am really shocked that your former surgeon has been so dismissive, and her response to your situation is just astounding. I remember how much you liked her, so this must really be an emotional blow for her to be completely dismissive now. But, you have a great attitude and are making the right decision by moving on to see what can be done to improve your quality of life.

    I have posted about Dr Hart in the past, and what good experiences I have had with him. He is very compassionate and caring, and an excellent surgeon. He was ranked highly a few years ago in the "Top 25" orthopedic spine surgeons in America, nominated by his peers. He does lots of complex revision surgeries. I wouldn't hesitate to recommend him to anyone who needs complex scoliosis surgery. Yes, his office is very busy, and you will probably wait an hour or more to see him, but if you bring your list of questions he will make sure to answer them all. He spent a long time with my husband and me before both of my surgeries going over everything and answering all of our questions. His office is also very responsive to getting needed prescriptions and FMLA/employer paperwork completed. He has a great PA, Kara Berent, who works with him closely on the pre-and post-op care, and I really like her also. I had no problem getting adequate prescriptions for pain control.

    I have a friend, another nurse, who had Harrington rods put in her lumbar at age 10, 40 years ago. Over time her thoracic progressed and degenerated considerably, until it was over 90 degrees several years ago. She had a big revision surgery with Dr Hart about 3-3.5 years ago, and has done incredibly well also. I am sure she would be happy to share her experiences with Dr Hart if you are interested in talking with her.

    My revision for broken rods was also all lumbar, posterior with XLIF's done from the side at two levels for pseudoarthroses. My thoracic fusion was fine, so that was all left undisturbed. The existing rods were cut around L1 and removed; new hardware and rods were put in the lumbar with connectors to the thoracic. It was still a long, complex surgery (about 8 hours), but it was an easier recovery (aside from suffering a paralytic ileus) and less painful. I had great nursing care in the new ortho/spine wing, and very good pain control.

    I consider myself the poster child for successful broken rod/revision surgery. I am almost 2.5 years out and doing great. I am active, I work a demanding job full-time, and I swim regularly. My back is essentially pain free. I work with massage therapy for some tight muscles, but any back pain I have is muscular in nature.

    Good luck with the CT scan. Do you have a return appointment scheduled with Dr Hart to discuss things further?

    Please feel free to e-mail me any time.
    Last edited by leahdragonfly; 07-20-2014 at 09:36 AM.
    Gayle, age 49
    Oct 2010 fusion T8-sacrum w/ pelvic fixation
    Feb 2012 lumbar revision for broken rods @ L2-3-4
    Sept 2015 major lumbar A/P revision for broken rods @ L5-S1


    mom of Leah, 15 y/o, Diagnosed '08 with 26* T JIS (age 6)
    5/10 VBS Dr Luhmann Shriners St Louis
    5/16 6 yrs post-op, 24*T/ 22* L, mild increase in curves, watching

    also mom of Torrey, 12 y/o son, 16* T, stable

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