Page 3 of 5 FirstFirst 12345 LastLast
Results 31 to 45 of 64

Thread: Telephone call

  1. #31
    Join Date
    Jan 2012
    Posts
    55
    Susan and Ed

    And I DO appreciate the other names Drs. Hart, Pashman, and Hu and will go to their sites.

    I forgot to mention that Dr. McAfee was mentioned to me as someone to investigate and I am going to--I already know that he is considered one of the "Top 50".

    Martha

  2. #32
    Join Date
    Jan 2012
    Location
    Yacolt, WA
    Posts
    1,577

    How do you decisde which surgeon is the "right one" for you?

    Martha, Your question about how do you know that your surgeon is the right person? Like you, I do a lot of homework before I even see a doctor. Where did he/she go to school? How many years in practice? Do any of my friends like him/her as a doctor? Does that person see older persons who need long fusions? How long has he/she been in practice? Is that person an SRS member? Associated with a large, hopefully university hospital?

    Sometimes, I guess that it could be "love at first sight", but like some of the men that I dated...that isn't always the right feeling.

    If the MD checks all of the screening boxes....then a visit helps a lot. Important: The more specialized a doctor is, sometimes the less the personality. My son [a family nurse practitioner] and I were talking about "caring" as an attribute of a spine surgeon. He said, would you rather have a MD who was caring and less competent or a MD who was an outstanding technical surgeon, but less on the personality? I said that I wanted "everything". Ha ha! Then he said, "Mom, if you want caring and compassion, call a social worker". He's right.

    I talked with 3 spinal surgeons, the first I threw out because while I liked him a lot and felt that he was very competent in what he did, he just wanted to do the L4-L5 stenosis/disc surgery and "save me from the big fusion". Initially, that sounded great as the surgery would certainly solve my immediate problem which was sciatic pain, but the more that I thought about it, it did not help my thoracic kyphosis. Then I got serious and called the local big university hospital near me and saw Dr. Hart. I actually saw him about 6 times total. I also saw Dr. Hu, who I only saw once but since I knew the answers to most of my questions from seeing Dr. Hart and was ready for surgery, I only saw her once [for about 1 hour with my son]. When I saw her I was ready to make the decision about surgery. I had 2 great choices and I went with the one that had the best after surgery support system. Both surgeons were the lead in their department at a major university and both appeared to have skill and caring.

    Sometimes you know who is the right person by seeing many MDs. It is also good to ask what surgery each would do and how they would do it. Both of the last 2 MDs chose the same fusion levels. They had slightly different approaches. I trusted both immediately. One was about a 1 hour drive from my house and the other was 13 hours drive. I did not feel that the 13 hour drive would be much problem [and it was not] because I was going to rehab for 6 weeks at my son's house which was about 45 minutes from the hospital. In retrospect, both would have been fine, but the 6 week's rehab at my son's house won out.

    Every person needs to decide what surgeon criteria are important. For me, things that were not important were: gender and how long I waited in the waiting room [as long as I felt that I had enough time with the surgeon].

    Best of luck with your search.

    Susan
    Adult Onset Degenerative Scoliosis @65, 25* T & 36* L w/ 11.2 cm coronal balance; T kyphosis 90*; Severe disc degen T & L stenosis

    2013: T3- S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 2 surgeries
    2014: Hernia @ ALIF repaired; Emergency screw removal Spinal Cord Injury T4,5 sec to PJK
    2015: Revision Broken Bil T & L rods and no fusion: 2 revision surgeries; hardware P. Acnes infection
    2016: Ant/Lat Lumbar diskectomy w/ 4 cages + BMP + harvested bone
    2018: Removal L4,5 screw

  3. #33
    Join Date
    Jan 2012
    Location
    Yacolt, WA
    Posts
    1,577
    “Monday morning bright and early I received a telephone message from Dana--Dr. Arlet's PA and assistant...

    She stated that Dr. Arlet was not going to perform my surgery. She said "it is too expensive" and that I "would probably not make it off the table". She further said something to the effect that Dr. Arlet had a reputation to uphold.

    She said I could go to another surgeon if I wanted to but they would only make me sign a DNR to perform the surgery.

    She would not/could not give me a specific reason for this other than my age and the intricate/complex surgery that would take ten hours.”

    Your recent thought: “I had no problem making my original selection--WHAT THE HECK IS WRONG WITH ME NOW? I am thinking my brain has been warped by The Telephone Call.”


    Martha: I cut and pasted your comments from 2 entries on this thread. When I read your last post about having the words of Dana, the PA stuck in your brains, I thought that I would give you my 2 cents.

    PA Dana is wrong on so many levels. I am a health care provider and what she said to you was completely unprofessional. I don't get the "too expensive" part???? Should we each only cost a certain amount? What about his reputation??? and how were YOU going to decrease his reputation?? and the DNR part was over the top!! Any doctor that would request that you sign a DNR before surgery is NUTS!! Run fast away from that doctor!!!

    The take home that I got from the call: Dr. Arlet has an age limit for major spinal surgeries [maybe short ones of 2-4 hours might be OK w/ him.] and your situation did not fit into his perimeters. I don't know why he did not say that to you in the visit when he realized that you were an older person AND needed a long fusion. When did he realize that? And why did he assign the job of telling you to Dana? If you and Dana had a good relationship going, then she might be the right person to talk with you [he would ask her to call you in that case]. But, NEVER like she did.

    The rest of the conversation was maybe only Dana's words [I am not defending Dr. Arlet] ....we have no idea whether Dr. Arlet really said those things and I bet if you asked him, he would deny everything except that he does not feel comfortable doing long fusions on older women.

    If I had received that call: I would have dissolved into tears. Then I would be angry....but angry at whom?

    Dana and Dr. Arlet DO NOT HAVE POWER OVER YOU! Take away their power and let go. Get both of them out of your brains! They were wrong. There is nothing wrong with you and your scoliosis and age. Many other very competent doctors will gladly help you.

    Own the piece of that transaction that is YOURS and let go of the part THAT IS NOT YOURS. Do not let that conversation have power over you.

    I will send you a PM if you would like to talk with me by phone.

    Susan
    Last edited by susancook; 08-03-2014 at 08:24 PM.
    Adult Onset Degenerative Scoliosis @65, 25* T & 36* L w/ 11.2 cm coronal balance; T kyphosis 90*; Severe disc degen T & L stenosis

    2013: T3- S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 2 surgeries
    2014: Hernia @ ALIF repaired; Emergency screw removal Spinal Cord Injury T4,5 sec to PJK
    2015: Revision Broken Bil T & L rods and no fusion: 2 revision surgeries; hardware P. Acnes infection
    2016: Ant/Lat Lumbar diskectomy w/ 4 cages + BMP + harvested bone
    2018: Removal L4,5 screw

  4. #34
    Join Date
    May 2009
    Posts
    3,745
    hi Martha
    since you live closer to NYC than to anyplace on west coast,
    have you called any surgeons in Manhattan...?
    just wondering, in case you do not find a willing surgeon
    in the Carolina area.

    jess...and Sparky

  5. #35
    Join Date
    Dec 2008
    Location
    illinois
    Posts
    819
    Well said Susan. Great advice!!!!

  6. #36
    Join Date
    Dec 2008
    Location
    illinois
    Posts
    819
    Well said Susan. Great advice!!

  7. #37
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    3,974
    Susan has some good posts above....makes it hard to follow.

    Of course its hard not to like Dr Hu, Berven or Burch....

    Linda, are you going to organize another meeting again at some point? I thought the past 2 meetings were extremely valuable and its really nice to be able to corner Dr Burch at the coffee machine for questions. (smiley face) Its also different after you are done, it doesn’t incorporate the stress of doctor shopping and or hearing heavy duty news that pertains to you....much more of a relaxed setting.....Of course, we need to at least get some of the west coast NSF members to make a show. (and maybe some east coasters)

    Ed
    49 yr old male, now 60, 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. #38
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,957
    Hi Ed...

    Wish I had the time. I haven't given up hope that I can pull off another one, but it's not looking good any time soon. I have, however, thought it would be interesting to change up the format, and have each of the physicians present about a specific procedure or complication, and then have a patient or patient panel who could talk about that issue with the audience.

    -Linda
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

  9. #39
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    3,974
    Linda

    That would be great. I like the patient panel idea....If you need a volunteer, let me know I will come down....

    Video would be a good idea....

    Ed
    49 yr old male, now 60, 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

  10. #40
    Join Date
    Dec 2008
    Location
    illinois
    Posts
    819
    I like the patient panel idea. We do know,first hand what all this is like.

  11. #41
    Join Date
    Jan 2012
    Posts
    55
    Susan, Jess, Ed and all of you who have taken this voyage--gone before me--and have been good enough to speak to this "issue"..,

    I believe I might be "coming to"...

    I thought the best method for finding a surgeon was to get a list of the surgeons who are considered tops...after all this will affect the rest of your life...and it was certainly not on my list of things to do while growing up...or old, if whatshername were asked...so go to the persons who make the lists...

    However, I have seen the names of many that the Forum members have had tremendous success with and who are not on the "top whatever list" (for lack of a better terminology) compiled by Becker...And, for all I know,
    this is the least of the best or least...

    I now feel that it is better to consider the names of surgeons who appear over and over and whose patients had a condition similar to mine and speak positively of them or rather positively of the outcome they have produced. I also feel that the surgeon while involved in research, etc should not be overly involved in that or similar ventures--one surgeon I was interested in seems to be very involved in research, etc. and research that takes him away from his home base and a good deal at that. Another does pediatric/adult but is basically a pediatric scoli surgeon. This is very simplistic but I do have to create some type of system of elimination.

    I would hope for a surgeon who is at least pleasant to people. And any patient would need confidence in the chosen surgeon...

    So, I am actually making a list...of surgeons and especially of questions to ask them..

    Thank you to each of you and please send any input you would like to send...

  12. #42
    Join Date
    Jan 2012
    Posts
    55
    And, come to think of it, this is basically how I connected with Dr. Brigham...

  13. #43
    Join Date
    Jan 2012
    Posts
    55
    I could not believe it BUT Arlet's Office has succeeded in losing ALL of my medical records that they had--GONE--I am now trying to at least get copies of the two MRIs and one CT.

  14. #44
    Join Date
    Jan 2012
    Location
    Yacolt, WA
    Posts
    1,577
    I hope that they have experienced your wrath and frustration at everything being "lost". Actually, in this day and age, nothing is really lost as everything is on an electronic system that has multiple backups. I assume that you have daily contact with the manager of the Records Department?

    Susan
    Adult Onset Degenerative Scoliosis @65, 25* T & 36* L w/ 11.2 cm coronal balance; T kyphosis 90*; Severe disc degen T & L stenosis

    2013: T3- S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 2 surgeries
    2014: Hernia @ ALIF repaired; Emergency screw removal Spinal Cord Injury T4,5 sec to PJK
    2015: Revision Broken Bil T & L rods and no fusion: 2 revision surgeries; hardware P. Acnes infection
    2016: Ant/Lat Lumbar diskectomy w/ 4 cages + BMP + harvested bone
    2018: Removal L4,5 screw

  15. #45
    Join Date
    Jan 2008
    Location
    Oregon
    Posts
    1,163
    I am shocked all over again at how badly you have been treated by this physician's office. The recent imaging exams (CT, MRI, x-rays) should be readily available from the radiology department where they were taken.

    I hope you can get this bad experience behind you and move forward with finding a surgeon to help you. I had two large surgeries with Dr Hart at OHSU (Oregon) and continue to be very pleased with his office and care. As mentioned above, he does see plenty of older adults who need major surgeries.
    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

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •