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Thread: Did not sign up for this - no free lunch

  1. #1
    Join Date
    May 2012
    Location
    El Centro, CA & Baja California, Mexico
    Posts
    193

    Did not sign up for this - no free lunch

    I thought that after my surgery in Nov 2012 with Dr Bridwell I would be fixed. Shortly after 7-9 months later I started getting GI problems (Eosinophil over abundance causing severe inflamation). Took away my taste buds but not smell, lost weight as I vegged in bed between lack of energy, diarrhea, and unabilibty to let food down my throat. Finally, after a while, it was was controlled and I continue to take medications to keep it under control.

    Then, I started to see small changes in my incision and watched for about 3-4 months. Pain started moving from large sections to other. Nothing sharp but almost like a whole section going numb as a block. Walking was cut down slowly to almost a 5mph stand still now.

    Consulted with a closer surgeon in San Diego, Dr Garfin. He took a look and said: I think Iliac screws are great, I used to use them but not anymore. I suggest removing them and all others as your pain is all over the hardware. A cat scan show that T11-T12 is not fused and that T10 has a fracture.

    I am totally unprepared mentally for this second surgery. What would happen after this second fix? Should I trust Dr Garfin? of course ...

    I have tried consulting with Dr Bridwell but it has been slow and complicated and I am not ready to just visit St Louis as I am nowhere as independent as before. I did go to St Louis last year in September and ended up having a shoulder replacement but because of last stay at the hospital (2012) I was extremely freaked out about spending any time at the hospital. I had my 2 daughters take care of me and it was not heaven.

    I can't even discuss all this again and again. Just tired of all this constant pain when one think it is positively going good then you are back on the downward slide. I no longer have any hopes nor certain of the future.
    Gardenia
    Baja California, Mexico & El Centro, Ca
    pre-surgery 75 and 89 - post ?
    Dr. Bridwell Nov 27, 2012 @Barnes Jewish @62yrs
    T11 to Sacrum Dural leak at L2 & L3 ccmail4g@gmail.com

  2. #2
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,802
    Hi Gardenia...

    Removing the screws is probably a good strategy if your pain is over the screw sites. Is Dr. Garfin going to refuse T11-12 and put short rods there?

    --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.

  3. #3
    Join Date
    May 2012
    Location
    El Centro, CA & Baja California, Mexico
    Posts
    193

    Dr Garfin rework

    Thanks, Linda for the quick reply. Yes, at first he said he wanted to review the state of fusion before doing anything. But, he will replace hardware on t11-t12 plus cement T10.

    Couple of months ago, getting up from the dining room chair my right foot just bloated up. In less than 10 minutes the foot inflated like an external hose was pumping it, I could not walk and could only scream. Good thing my husband was nearby. It was painful. Finally the pressure came down and things had been quasi normal but the foot never regain original state. Had xrays taken and showed nothing.

    I think it is related to my hardware. Today the front of the leg is connected to the foot by a very tight string. String goes down from knee to the inside of the ankle going around the ankle to end on the outside of the foot with a burning sensation. Damn, it is all related!

    Does anyone know about Dr Garfin?
    Gardenia
    Baja California, Mexico & El Centro, Ca
    pre-surgery 75 and 89 - post ?
    Dr. Bridwell Nov 27, 2012 @Barnes Jewish @62yrs
    T11 to Sacrum Dural leak at L2 & L3 ccmail4g@gmail.com

  4. #4
    Join Date
    May 2013
    Location
    Grove City, OH
    Posts
    275
    Gardenia- I'm sorry you're having these complications. I hope you get the answers you need and soon! I'm sure you've searched the Internet for info on your dr. I couldn't find much about mine, but he was trained by Dr Lenke, so that gave me confidence. Perhaps, you can learn more about where your dr was trained & about the Drs in his practice?
    Peg
    61 yrs old
    75 degree lumbar curve with thoracic kyphosis
    T3 - S1 surgery with Dr. Buchowski in St. Louis, on 10/27/14
    Working on healing in Columbus, Ohio!

  5. #5
    Join Date
    Aug 2012
    Location
    San Francicsco Bay Area
    Posts
    127
    I am so very sorry to hear about these terrible problems you're having post-surgery. This is why I am so afraid to be re-instrumentated again. I think everyone reacts differently to the metal implants, just like people have different reactions to various medications. Dr. Bitan in NCY told me he never uses illiac screws as they cause so many problems. However, another Scoli surgeon said if you didn't use them you could break down there. In any event it sounds like there are areas where you are not fused that have to be corrected. Again, I am very sorry about this. What a huge bummer. Perhaps, in the future, you can do like I did and get a hardware removal surgery done.

    Wishing you the very best,
    T1

  6. #6
    Join Date
    May 2012
    Location
    El Centro, CA & Baja California, Mexico
    Posts
    193

    UPDATE - After 2nd opinion by Dr Bridwell in St Louis

    I have cancelled my revision surgery with Dr Garfin at UC SD for end of May. Visited Dr Bridwell last week who took a long series of Xrays and Cat Scan (bones +) using 2 types of radioactive solutions and endless hours of laying on hard surfaces etc.

    Conclusion is that nothing has moved, NO infections, T11-T12 are not completely fused, T10 has a crack and above to T3 slightly problematic Cannot see any cause/s for Pain producing reason.

    Recommendations: Do not remove anything by anyone specially by a non-scoliosis surgeon regardless of experience. Do not allow anything injected eg cortisone or glue. If possible, he would apply more hardware from T10 up to T3 however due to my past bad stressful reaction to the surgery with the inflamation to my digestive system which required the use of Prednisone, he will not risk it.

    Prednisone last year for one month, rest of one/two weeks, and back another month is what possibly caused the non-fusion on T10/T11. And, the inflamation might return if I have another surgery thus highly close to killing me.

    Advise: go to therapy, excercise, eat more protein to produce more muscle as I am showing deficit in Protein counts, and/or visit a pain management helper. I need to become more active again as for the past year I have slowly become a hermit. Living in a remote desert area with not much to do has turned my life to not much.

    I will get back on the treadmill just to get some excersice as the news of the poor tragic accident of this young person in Puerto Vallarte trying to be healthy.
    Gardenia
    Baja California, Mexico & El Centro, Ca
    pre-surgery 75 and 89 - post ?
    Dr. Bridwell Nov 27, 2012 @Barnes Jewish @62yrs
    T11 to Sacrum Dural leak at L2 & L3 ccmail4g@gmail.com

  7. #7
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    3,557
    Gardinia, how about walking outdoors? There is fresh air out there, and sun......these things help.

    What did he say about the non fused areas and crack at T10-T12? He still wants to wait things out?

    Hope you feel better soon...

    Ed
    49 yr old male, now 59, the new 55...
    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

  8. #8
    Join Date
    Oct 2007
    Location
    Indiana
    Posts
    1,974
    The only caveat for walking outside that I could see was the "living in a remote desert area" word. I know when we lived in the high desert of southern California, it would usually (often) be 110 or so and feel like a blast furnace -- and of course there was not a single lick of shade to be found. So it might depend on if it cools off in the evening and if there is some shade around. If so, that would be more pleasant than treadmill walking. And as Ed says, the fresh air is good for you. (smile) Plus much less tedious. Wear a hat and sunscreen (that's the melanoma survivor in me coming out...) as you have strong sun there if it's between 10 and 4.

    It also may help to keep a "tracker" of your time spent so you can have a visual reference of your time walking. (or not walking!) A walking journal/calendar of sorts-- or just jot it down on your regular calendar "walked 15 minutes" or "walked 30 minutes". It encourages you. Best wishes with this new course of action! Just remember that if it hurts very much, don't do it, ease off. Start little. Hugs!
    66 and still heartbroken...
    2007 52 w/ severe lumbar stenosis & L2L3 lateral listhesis (side shift)
    5/4/07 posterior spinal fusion T2-L4 w/ laminectomies and osteotomies @L2L3, L3L4
    Dr. Kim Hammerberg, Rush Univ. Medical Center in Chicago

    Corrected to 15
    2014 DXd w/CMT (type 2)

    Click to view my pics: pics of scoli x-rays digital x-rays, and pics of me

  9. #9
    Join Date
    May 2012
    Location
    El Centro, CA & Baja California, Mexico
    Posts
    193

    Living in the desert in Baja

    Thank you my friends, not that I have an excuse against exercising because I do. We are in a gated community where almost 90% are Americans, the Ranch is 3500 acres and it is the sice of San Francisco. Plans are that it will only be developed 1/2 because of the amounts of open space planned. We have a couple of permanent residents and various other that come down once or twice a year. Most people planned on retirement as in Cabo San Lucas style but properity and economy did not happen, (yet).

    We have a beautiful view of the Sea of Cortez about 3 miles and the majestic mountains with one separating from the Pacific ocean at 10k feet high. The streets are purposely not paved with tar to keep them eco friendly. So it is dirt with rocks and holes whenever maintenance has waited to long to fix. It only rains 3 inches a year in the 3 days it rains. But, in the past 4 years it has rained more days but each day raindrops are the size of barrels.

    I am back on the treadmill for 20 minutes each and I read a book on the kindle which disstracts me. We have lots of fresh clean air and we leave doors open all the time. We designed the house with an enclosed courtyard and a pool with bedrooms connected only by an outside walkway.

    All that is great but it is lonely as my husband is working all day in his office but it is at least company. I know that I will get out of this someday soon. I have now, confirmation that the pain is not caused by the hardware so I can live with that. I was certain that those sharp end of the screws have to be doing something very wrong.

    I am glad that I am not removing them because 2.5 years ago the reason I did this is to provide my curves some support against collapsing.

    Thank you all for helping me thru this period. Love you all.

    PS - while waiting for radiology on a Saturday morning, there was this guy that looks like a homeless pushing a cart filled with newspapers etc. Totally, disable but could walk using his all twisted legs and arms. Could not talk well. Here is his story that made me reconsider how wonderful my life is.

    http://www.stltoday.com/news/local/c...ad9bb36af.html
    Gardenia
    Baja California, Mexico & El Centro, Ca
    pre-surgery 75 and 89 - post ?
    Dr. Bridwell Nov 27, 2012 @Barnes Jewish @62yrs
    T11 to Sacrum Dural leak at L2 & L3 ccmail4g@gmail.com

  10. #10
    Join Date
    Jan 2008
    Location
    Oregon
    Posts
    1,162
    Hi, that is a very inspiring article! I enjoyed reading it and it brought a smile to my face what the hospital community did to help him.

    Good luck with everything.
    Gayle, age 50
    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)
    2010 VBS Dr Luhmann Shriners St Louis
    2017 curves stable/skeletely mature

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

  11. #11
    Join Date
    May 2010
    Posts
    346
    Quote Originally Posted by gardenia View Post
    Thank you my friends, not that I have an excuse against exercising because I do. We are in a gated community where almost 90% are Americans, the Ranch is 3500 acres and it is the sice of San Francisco. Plans are that it will only be developed 1/2 because of the amounts of open space planned. We have a couple of permanent residents and various other that come down once or twice a year. Most people planned on retirement as in Cabo San Lucas style but properity and economy did not happen, (yet).

    We have a beautiful view of the Sea of Cortez about 3 miles and the majestic mountains with one separating from the Pacific ocean at 10k feet high. The streets are purposely not paved with tar to keep them eco friendly. So it is dirt with rocks and holes whenever maintenance has waited to long to fix. It only rains 3 inches a year in the 3 days it rains. But, in the past 4 years it has rained more days but each day raindrops are the size of barrels.

    I am back on the treadmill for 20 minutes each and I read a book on the kindle which disstracts me. We have lots of fresh clean air and we leave doors open all the time. We designed the house with an enclosed courtyard and a pool with bedrooms connected only by an outside walkway.

    All that is great but it is lonely as my husband is working all day in his office but it is at least company. I know that I will get out of this someday soon. I have now, confirmation that the pain is not caused by the hardware so I can live with that. I was certain that those sharp end of the screws have to be doing something very wrong.

    I am glad that I am not removing them because 2.5 years ago the reason I did this is to provide my curves some support against collapsing.

    Thank you all for helping me thru this period. Love you all.

    PS - while waiting for radiology on a Saturday morning, there was this guy that looks like a homeless pushing a cart filled with newspapers etc. Totally, disable but could walk using his all twisted legs and arms. Could not talk well. Here is his story that made me reconsider how wonderful my life is.

    http://www.stltoday.com/news/local/c...ad9bb36af.html
    Hi Gardenia,
    I just want to let you know I totally know what you mean by isolation. It doesn't feel too good! I suffer
    with chronic pain, (mostly cervical, my neck &a shoulders) but also my iliac screws cause pain, T/4 pain and bad feet.!I don't go anyplace unless I have to. But I am, like you, trying to do things to improve my condition! It sound like you live in a gorgeous home and beautiful area. It's all great and wonderful if we could just get back a quality of life that helps get us back into circulation. I wish you all the best!! I hope you keep us updated and I'll try to do the same. 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
    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

  12. #12
    Join Date
    Mar 2008
    Location
    Chicago-"land"
    Posts
    157
    Quote Originally Posted by gardenia View Post

    Then, I started to see small changes in my incision and watched for about 3-4 months. Pain started moving from large sections to other. Nothing sharp but almost like a whole section going numb as a block. Walking was cut down slowly to almost a 5mph stand still now.


    I am totally unprepared mentally for this second surgery. What would happen after this second fix? Should I trust Dr Garfin? of course ..

    I can't even discuss all this again and again. Just tired of all this constant pain when one think it is positively going good then you are back on the downward slide. I no longer have any hopes nor certain of the future.
    I'm sorry Gardenia, you have had a lot to deal with.. Please don't take Dr. Garfins first advice and drive a little further north to L.A. There are about 5 great surgeon in the LA/Beverly Hills area. Get more opinions and best of luck to you! I hate even hearing words like kyphosis anymore - I have all those extra goodies that come with scoli: DDD, spondilothesis (sp), Kyphosis, subluxation, etc. This surgery performed the Dr. I SHOULDN'T have trusted has changed the last 8 years of my life.

    I got 5 opinions before changing my mind at the last minute - and I did my homework and INTERVIEWED surgeons. This is your choice. Don't go with the first one.
    Susan
    XLIF/Posterior Surgery 6/16/08. Fused T10-L5 in CA by Dr. Michael Kropf (don't go there unless it's simple, I hear he's at Cedar's now). Very deformed, had revision w/5 PSO's, rods from T-3 to sacrum including iliac screws, all posterior, 5/23/16 with Dr. Purnendu Gupta of Chicago.


    Owner of Chachi the Chihuahua, So Cal born and bred, now a resident of 'Chicagoland' Illinois. Uh, dislike it here....thank God there was ONE excellent spine surgeon in this area.

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