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Thread: Is there someone to take over ?

  1. #1
    Join Date
    May 2012
    Location
    El Centro, CA & Baja California, Mexico
    Posts
    160

    Is there someone to take over ?

    I just returned from St Louis for my one year check up. It was a very disappointing visit as Dr Bridwell would not answer all my questions. Some he did addressed like why there are no measurements on the new x-rays thus not know the degree of correction but everything to do with the stretching pains, hard block as in cement on my back, left leg numb to the foot, and walking joints problems... they were just evaded. Even my last question about the numbness of my knee and down he got up and said: enough or something similar. We were so shocked.

    Not knowing the proper protocol, am I supposed to transfer to another type of medical doctor to pamper and answer my questions as to why this or what is causing that? I am so thankful for this block and have people share their experiences - of course my surgeon and his staff are not as qualified to make comments of how the body feels or should expect during recovery. They don't have the experience only on the fixing (the mechanical work).

    He did spend talking about my other condition I am dealing with which takes precedence to healing my fusion. My Eosinophil Gastroenteritist - Dr Bridwell wants me to regain at least 10 if not 15 lbs but I am happy as I am. His practice has encountered 2 similar but one degree worse of what I had with 2 patients post surgery. He said that it is not sure if the problem was there prior, or contracted during the time of stress or even if the body reacted fiercely to the instruments/added chemicals as in the BMP. His two other patients suffered from CRONKHITE CANADA SYNDROME with polyps (bleeding?) and 4-5 other symptoms which I had ( nails discoloration, pigmentation on the hands, loss of taste but not smell, and at least with me not much loss of hair). I am on the mend but not full speed. This concerns me and Dr Bridwell because taking Prednisone affects the bone and the fusion however I will die if not treated.

    BTW of the 2 patients only one made it. Anything dealing with the gastro system is unknown, doctors do not know enough about the cause but only how to treat by trial.

    Hope everyone is aware if in addition of the back pains they suddenly develop an eating, digesting, disposing problems. Most horrible 6-8 months of my life.

    Happy belated Thanksgiving.
    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
    Mar 2010
    Posts
    2,673
    Gardenia,
    I don't have any answers for you, but am shocked and saddened by what you are going through and how you were treated. I hope they can cure your blood disorder. I would agree that this would take priority over the numbness issues. Even so, Dr. Bridwell shouldn't have been rude to you. After all, you came a LONG way to see him and pay him BIG $$$ to treat you. I would think you are close enough to prime medical care on the west coast to be able to find someone else to take over your care. It has been my experience that scoliosis surgeons have the worst bedside manners of any category of doctors that I've ever met. I don't know why that is.

    Get well soon!
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

  3. #3
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    2,849
    I agree, this is a hard thing especially when we become so attached and so dependent on our surgeons. Complications are things that we have to expect, and even with the best of scoliosis surgeons, answers can be so difficult or they just don’t exist because they don’t know.

    Multiple problems compound the difficulties of diagnosis.....It seems that only one problem can be tackled at any given time, almost like in Melissa or Linda’s case. Both have really hung in there and rolled with the punches through the years. My own brother hung in there for over 50 years of trial and error. I am the lucky one...

    Gardinia, Yes, there is someone that will take over, but its not going to be Dr B. I truly hope that you can find that right person, closer to your home.

    Probably best in San Diego, or Arizona.

    Ed
    49 yr old male, now 55, the new 45...
    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

  4. #4
    Join Date
    May 2012
    Location
    El Centro, CA & Baja California, Mexico
    Posts
    160

    Looking for that loving doctor - likely a psychiatrist

    I keep saying that now my back is fixed, my gastric will be fixed so I next go treat my head. (joke)

    Yes, Dr. Bridwell is an experienced scoliosis surgeon like the best plumber or hardware fix-man however he has no intention of babysitting. My primary doctor is in the border-town of El Centro and of a younger generation who will fix your immediate problem and always ready to refer you to a specialist. I would not mind except that there is not a whole lot of specialist and I live almost 3 hours in Baja California on the eastern side.

    I have been going to UC San Diego to their GI clinical chief very nice but it is an additional 2+ hours which my back can't handle well so we rest overnight (or maybe buy us a newer car with super shock absorbers or with a bed).

    I have learned that with GI problems there are fixes that work but the causes are unknowned and sometimes mis-diagnosed. I am certain that I will recover from my stomach problems and just have to eat lots but little at a time. Have to watch what I eat and log everything that causes indigestion-like symptoms. Problem is that I can't seem to find 'dry food' appetizing like a burger or sautee vegetables - it has to be like a stew (soft texture and with lots of sauce - soups are great)

    About my back, I just want someone to tell me this or that is normal but it is mostly by personal experience that one learns and thru this blog's support as every one is different. So, I am going to grow up and stop looking for answers or nurturing.

    Thank you all. This is a great place to be....
    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

  5. #5
    Join Date
    Oct 2007
    Location
    Indiana
    Posts
    1,891
    Dear Gardenia-- I, too, am so sorry to hear of your disappointing appointment with Dr. Bridwell and with all the other health factors that are bearing down on you. You seem to have such a good attitude and are able to joke a little, when it would be so easy to be bitter. My thought is that Dr. B. just did not have positive answers (as in easily remedied) to your questions and rather than respond as he should have, he skirted the issues that are so important to you, and then just cut you off as he maybe didn't have a concrete answer to diagnose and repair your problems. That is wrong of him, but maybe he couldn't think of what to say. I agree with Ed that you should find another scoli doctor-- and a top-notch one. I remember in the past people speaking of good surgeons in southern California... Maybe you'll find your answer there.

    You have always been such a pleasant, positive person on the forum. I will pray that you will find a doctor that can help you once you get your digestive problem resolved. For some reason you have always brightened my day just seeing your name, and I picture you as being as sweet as the beautiful gardenia bushes that were in my yard as a child. Take care-- and know that we do care about what is happening with you.
    63, and feeling better with each year-- Life is good!
    2007 major curve @ 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°-- and Tickled Pink!!!


    Click to view my pics: [url=http://s244.photobucket.com/albums/gg25/SusieB1951/pics%20of%20scoli%20x-rays/,[/url] digital x-rays, and pics of me

  6. #6
    Join Date
    Jun 2013
    Location
    Asheville, NC
    Posts
    79
    Hi, Gardenia,

    Pleased to "meet" you!

    About the car trips, if you can rent an SUV or van for a day you can lay the back seats down. Put a two inch foam topper twin size with a sheet on them and you have a wonderful transportation for scoli's both post op and pre op. You can still sit in the passenger side for a bit if you are up to it, and lie down when you want to do that. I did my six week post op five hour one way trip to my surgeon that way. There was room for luggage as well.

    About your former surgeon...is there a possibility something went wrong in your surgery? Something he is afraid he might be liable for? I know you are working on a primary issue other than your spine, but from your description it sounds like your lumbar nerves are involved. My biggest complaint pre surgery was numbness in my leg. Turns out my L2 and L3 were twisted over the nerves that feed the legs. Did you have numbness pre surgery? If you didn't, then something is wrong. If I were you, I'd check out a few scoli Docs out there and get my primary care guy to send a referral for you. Then the new doc's people can take care of getting your records from your old Doc. You need answers. We can help with sympathy, but not so much with answers.

    Take care and good luck.

  7. #7
    Join Date
    Jun 2013
    Location
    Asheville, NC
    Posts
    79
    Wow, Gardenia,

    I just read about your dural leak at L2 and L3. Was it taken care of? The nerves to your legs branch off from there. Pressure there can cause numbness and weakness in the legs. I wouldn't just let it go. The whole reason I had my surgery was numbness in one leg that was progressive. Even if it isn't progressive if the pressure on the nerve lasts long enough it can be permanent. I don't have numbness anymore, but they took me to xray in my first days post op to see if my right foot was dead. It isn't, but my toes are purple a lot.

    Take care of yourself!

  8. #8
    Join Date
    May 2012
    Location
    El Centro, CA & Baja California, Mexico
    Posts
    160

    Dural Leak

    Quote Originally Posted by WLB1 View Post
    Wow, Gardenia,

    I just read about your dural leak at L2 and L3. Was it taken care of? The nerves to your legs branch off from there. Pressure there can cause numbness and weakness in the legs. I wouldn't just let it go. The whole reason I had my surgery was numbness in one leg that was progressive. Even if it isn't progressive if the pressure on the nerve lasts long enough it can be permanent. I don't have numbness anymore, but they took me to xray in my first days post op to see if my right foot was dead. It isn't, but my toes are purple a lot.

    Take care of yourself!
    dr Bridwell knew that would/might happen going in so he had an assistant who was some big wheel in neurosurgery (not a fellow). My operative reports goes into details of what they did. I feel good about that, the numbness if it came from that then it is a small price to pay as long as it does not get worse. Staying under sedation for an extra 72 hours might have done damages to my gastric system because my intestines would not inflate and work. I could see the gas building up from low intestine all the way up making me look very pregnant - then it would not go away even after several enemas. I stayed in the hospital extra days.

    Actually the numbness is only slight so I can ignore it.

    Thanks for sharing, I wish we could catalog all these knowledges we have by subject. Many of the responses are hidden.
    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

  9. #9
    Join Date
    May 2012
    Location
    El Centro, CA & Baja California, Mexico
    Posts
    160
    Quote Originally Posted by WLB1 View Post
    Hi, Gardenia,

    Pleased to "meet" you!

    About the car trips, if you can rent an SUV or van for a day you can lay the back seats down. Put a two inch foam topper twin size with a sheet on them and you have a wonderful transportation for scoli's both post op and pre op. You can still sit in the passenger side for a bit if you are up to it, and lie down when you want to do that. I did my six week post op five hour one way trip to my surgeon that way. There was room for luggage as well.

    About your former surgeon...is there a possibility something went wrong in your surgery? Something he is afraid he might be liable for? I know you are working on a primary issue other than your spine, but from your description it sounds like your lumbar nerves are involved. My biggest complaint pre surgery was numbness in my leg. Turns out my L2 and L3 were twisted over the nerves that feed the legs. Did you have numbness pre surgery? If you didn't, then something is wrong. If I were you, I'd check out a few scoli Docs out there and get my primary care guy to send a referral for you. Then the new doc's people can take care of getting your records from your old Doc. You need answers. We can help with sympathy, but not so much with answers.

    Take care and good luck.
    Funny that my GI doctor found it interesting that Dr Bridwell has 2 patients with CCS and would like to consult with him.
    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
    Mar 2010
    Posts
    2,673
    Gardenia,
    That would be scary if it were the BMP. Maybe he uses too much? Please let us know. I've never heard of that particular complication, and to have THREE cases with ONE surgeon does seem a lot. I haven't had surgery and don't know if I ever will. But, just in case, I would like to know if it has something to do with the BMP. Also, did you receive blood transfusions? I wonder if the blood bank that he uses is tainted. But, in that case, EVERYONE who uses that blood bank would be showing up with that complication. Hmmm.... It is puzzling. I hope Dr. Bridwell agrees to consult with your GI doctor!

    I hope you are better. The fact that you are ALIVE and posting is great! How are you feeling? Are you able to eat "dry" food, yet?

    Take Care!
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

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