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Thread: Telephone call

  1. #46
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    Jan 2012
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    55
    Susan--I am getting copies of the discs--the one I sent prior to going to an appointment with the King, the two I took out and the one done out there...

    I googled Dr. Hu and she is interested in/concentrates on all of my issues...how hard is it to get in to see her?

    Who is Hart? I mean, his first name and where is he. I am checking every body out...

    Did you have a great deal of pain prior to surgery? And how is the pain now?
    But the one thing that would terrify me is any statement similar to the one she made to you: the 1/100 odds. That got to me just reading it...Didn't it sort of terrify you?

    At my appointment with my GP, we briefly discussed the surgery business...He stated that I am a better candidate for surgery than most are. He said I do not have any of the medical conditions that would be a red flag..disqualify a person...etc I do not have cardio problems, copd, etc and so forth--none. And people do not think I am my age or sound like it on the telephone. As far as the anesthesia is concerned...he said any one is subject to an issue with anesthesia. Another physician I have to see stated that being under anesthesia is very safe because the patient is monitored so closely--I was moaning and groaning about being scared--do not know if I agree with the very safe thingy...I still have to speak with my anesthesiologist friend...

    Martha

  2. #47
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    Apr 2012
    Location
    San Jose, CA
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    567
    Hi Martha,

    I am also a Dr Hu patient. She is in Stanford, Palo Alto now. Several months ago I suggested her to a friend, and he got an appointment easily, but he had a very difficult case (in a wheel chair for several years) and Dr. Hu said at the appointment that she wouldn't be able to help him... sad... Look up Stanford spine center online and give them a call. Good luck!
    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

  3. #48
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    Jan 2012
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    55
    Gayle

    Thank you for your comments and information...

    I would be very interested in speaking with Dr. Hart but what is his first name?

    Martha

  4. #49
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    Jan 2012
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    Ed

    Why was the choosing process with your surgeon 2 1/2 years--was he relatively new and inexperienced or did you have the time to wait and "look ?"around?

  5. #50
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    Jan 2012
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    Jess

    You asked if I would consider going to NY and the answer is "yes" and actually I am and, as I understand it, we are interested in the same surgeon--Dr. Lonner. What was it about him and/or his background that attracted you? Have you had an appointment with him yet?

    Martha/Lordswild

  6. #51
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    Jan 2012
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    Irina

    I had the very same experience with a friend--and actually could not believe it--growing up in a medical family, I thought physicians were totally gods and could do any thing so this was really a shock...the girl (woman--following my divorce, my Mother always "accused" me of thinking I am still young--hence, the terminology...) was in a wheelchair also and at one time, we had been very close and she, very, very kind to me when I absolutely needed it!!! I still feel rather guilty--I never understood why someone so very intelligent and with it and with significant resources even without insurance did not seek help much earlier--I thought she had it all: kind, successful, capable, attractive, good background, and on and on...

    Thank you for your reply and information...

    Martha/lordswild

  7. #52
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    May 2009
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    3,729
    hi Martha
    i love Dr Lonner...i like his knowledge and skill level and his personality...
    saw him last month...i have seen him several times over the years.
    he still wants me to have surgery...i still keep resisting...
    he is so very busy lately...he kind of threw an order for
    nutritional panel at me, and an MRI order....
    said we'll talk after i get that done...

    but you are a new patient...he has known me for some 10 years
    or so now...
    i am sure he will spend plenty of time with you...
    and i am betting you will like him...

    jess...and Sparky

  8. #53
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    Jan 2012
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    Jess

    Thank you for the reply...

    How did you find out about his skill level, knowledge etc. I am no where near as well versed as you and most of those on the Forum. Have you asked about pain reduction or elimination?

    I had very little pain until the doctor and his PA rushed to judgement and put me in a Cam Walking Boot--they did not take time to reread my record or ask me any questions--I was in rip roaring morbid pain in about two days and it has never let up--this despite having given birth and a loss with no medication at all...

    Other than Lisa (sp), do you know any one who has had surgery or appointments with him?

    Martha/lordswild

  9. #54
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    May 2008
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    reno,nevada
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    Quote Originally Posted by lordswild View Post
    Ed

    Why was the choosing process with your surgeon 2 1/2 years--was he relatively new and inexperienced or did you have the time to wait and "look ?"around?
    I wasn’t ready since I owned a precision manufacturing company and had 52 employees. At the end of 2007, my efforts at pain control were not working, and I finally set the date. That triggered the sale of the business since there were no guarantees, I was going to have a massive anterior surgery with cancer exploration. Not only did I have the surgeries hovering over my shoulders, I had lawyers working on the contracts of the sale of the business.

    I guess its called “Having ones ducks in a row”. Everything has to be right for these things to happen, and after many years of thinking “I can hang in there” it was extreme pain that made my decision. It started with setting my date and making that commitment.

    There really is no reason to be doing a doctor tour and spending a ton of effort on this. Its just that selection needs to be pinpointed towards the ones that “are” truly qualified as scoliosis surgeons. My surgeon was young.....but came out of TCSC. I also had this thought that I had to weigh out and had to decide on picking the elder surgeon with 10,000 surgeries under his belt, or the newer “freshly trained in new techniques” younger surgeon. I chose the latter....besides being a genius, that also helps.

    Multiple surgeons is a good idea.....a really good idea. They have done studies on the results at UCSF, and I agree, the more the merrier. I had 2 scoli surgeons and an elder very experienced vascular surgeon. My hospital reports were written by 10 doctors.....and the hospital was very proud.

    We actually have some really good doctors out here in little old Reno....I think that Lake Tahoe attracts them.

    We also have THE best medical research facility here in the WORLD. One of the billionaires up at Tahoe has a daughter with a disease, came down the hill with a blank check and asked, “What will it take?” They keep erecting all these new buildings at the UNR campus med school....Apple is also erecting a new $1Billion plus city, out here for software development....

    Reno is a gambling town and medical science is a good bet. Its nice to see things moving in the right direction.

    Ed
    49 yr old male, now 62, the new 63...
    Pre surgery curves T70,L70
    ALIF/PSA 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

  10. #55
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    Jan 2008
    Location
    Oregon
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    1,158
    Quote Originally Posted by lordswild View Post
    Gayle

    Thank you for your comments and information...

    I would be very interested in speaking with Dr. Hart but what is his first name?

    Martha
    Hi Martha,

    Robert Hart at Oregon Health and Sciences University (OHSU), Portland, Oregon http://www.ohsu.edu/xd/health/servic...m?personid=314

    Here is a link: http://www.ohsu.edu/xd/health/servic...erts/index.cfm -This one is a podcast or video of Dr Hart giving a talk about treatment options for scoliosis in adults.
    Last edited by leahdragonfly; 08-10-2014 at 10:56 AM. Reason: links added
    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. #56
    Join Date
    May 2009
    Posts
    3,729
    i saw several top surgeons when i was consulting for surgery....
    i did not see Dr Lonner for pain management...

    i read about him on his website...
    also..."Admoul"....Anne from NJ had surgery with Dr Lonner
    and had curves similar to mine...she was very pleased with
    the results...
    and Dr Lonner's office gave me phone number of another patient
    who had surgery with him...she was very pleased as well...

    Martha...i think you are missing the point...the top surgeons who
    have names well known to scoli patients got there because patients
    are pleased with those surgeons...that is how their names become
    known...
    in NYC i saw Boachie, Dr Neuwirth, and a couple of others....Lonner
    impressed me the most...and i liked both the knowledge he displayed
    and his personality...nice if you can find both in one doctor.
    there is also the issue of INSURANCE....that is a limiting factor as to
    who...whom....one can have as their doctor.

    i go to a pain management doctor for pain tx...
    i do not look at surgeons for that...i look to doctors who specialize
    in pain management....i look to surgeons only for surgery.

    jess....and Sparky
    Last edited by jrnyc; 08-10-2014 at 03:30 PM.

  12. #57
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    Jan 2012
    Posts
    55
    Ed

    I am so very glad for all of your positive results!!!

    You must be rummaging around in my mind--almost all of what you have said echos there!!! Certainly, we do see how MY thought that the surgeon SHOULD have attained "almighty" status (the 10,000 category) turned out!!! (Arlet is one of the top 8.) And, I just stated that I was not interested in a surgeon that was very busy in activities outside of surgery---some, of course, but I have seen some information on sites that leaves me wondering how the surgeon has had any time to operate. Obviously, I am still evolving--slowly, maybe, but surely...

    And, I, too, have A LOT going on other than this...I am owed nearly $40,000 and the system in place to help me--the Solicitor's office--has instead not only refused to help me but has been actively blocking me, harrassing and threatening my son and his family, me and, from what I can gather, any one who has even thought of helping me to the point that they will not speak with me again...Why??? Because I accidentally learned that Horry County law enforcement was participating in illegal loans at a local Federal Credit Union. One was put in my name and when I found out and tried to have it removed, the detective told me the woman involved was their "go to" and that the Solicitor's office had promised not to help me. I was told that I would be put in jail if I did not let it go--a SLED officer drove 8 hours to my home to inform me of this. I had so many attempted break ins that I had to get a security system.

    Back to the issue: is your surgeon still in Reno? You said he looked 32--what was his actual age?

    I cancelled my scheduled surgery with Dr. Kurd at Carolinas b/c of his age and experience with surgeries similar to mine (actual age 35 and said he had performed about 50 like mine).

    There is another surgeon that I have heard about that seems very competent and is making his "mark" Khaled Kebaish...

    Some have suggested Dr. Lonner...

    I thought I would call both of them...

    Any input would be welcome...

    Martha

  13. #58
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    Jan 2012
    Posts
    55
    Jess

    I can see that my remarks about pain were not clear...

    I have become increasingly concerned about the fact that there are those who still have pain and some who seem to now have pain that did not previously...

    Maybe I am being naive, but I thought most or all of the pain would be eliminated with surgery. And maybe this is the case but I am not seeing that spelled out...

    Martha

  14. #59
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    Jan 2012
    Posts
    55
    Jess

    I selected Dr. Brigham and Dr. Hey to consult with for surgery--based on their reputations with patients.

    I went to see Dr. Hey first--then to Dr. Brigham. I had previously seen Dr. Brigham--in 2002. I picked Dr. Brigham because of former patient input, his credentials, we clicked, again, and, what I perceived as negative situation at least for me with Dr. Hey. After Dr. Brigham died, I certainly floundered but I have not confused a surgeon with a pain management doctor...

    I, too, have had a pain management doctor and am going to a new one tomorrow as a matter of fact...he is closer (driving 150 miles is too hard, now) and a friend who is the head of a PT business highly recommended him...

    Martha

  15. #60
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    May 2009
    Posts
    3,729
    Martha
    i am sorry you are in pain and glad you have a pain management doctor...

    i really think the top surgeons are there because they have done alot of scoliosis surgeries...because their entire practice is devoted to spinal surgery...and because enough patients have mentioned their names in positive ways, and have had positive outcomes. i think it depends on which doctors your insurance will cover,
    and who a patient "clicks with" out of the top surgeons they go to see for consults....
    sometimes an excellent doctor will not have a good bedside manner...there are patients who will sacrifice one for the other...i think it is nice when a surgeon has both....the skills and the personality.

    but...all the good surgeons will tell you...there is NO guarantee of less pain after surgery....i have been told NOT to do surgery for pain relief...but to stop progression of curves...

    jess...and Sparky

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