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lordswild
07-22-2014, 05:32 PM
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.

I call placed to my GP--the one thing that every doctor has to say about me medically is the high quality of my health. Other than this scoliosis issue and some hernias (probably from the 2010 hernia repair, etc.), I do not have any problems. My bones are normal, my heart is normal, etc--I take HRT and thyroid meds and now pain meds along with multiple vitamins--nothing else. I carry Allegra and an Epipen.

If you know of a surgeon who operates on the 70's-age-with a curve of 70 in 2012, please reply.

Thank you

mabeckoff
07-22-2014, 06:40 PM
Where do you live?

Melissa

JenniferG
07-22-2014, 07:06 PM
Definitely a second opinion required! You do not want a surgeon who feels he's not up to the job, because he probably isn't. Best of luck!

PeggyS
07-22-2014, 07:14 PM
Oh my, I'm so sorry to hear about your phone call. I re-read some of your earlier posts to see when you'd been scheduled. I'm thinking he wasn't the right surgeon for you, all along! You had some doubts. . . Could this be a blessing? It's got to be hard to look at it that way - you've been thinking & planning. It probably feels as though a rug has been pulled out from under you! You need a doctor who is confident in his/her skills for your needs. I 'get' that you may be a high risk patient, but the 'reputation' part was uncalled for.
I'm going to St. Louis for my surgery because after a year+ of searching, I couldn't find anyone in or near Ohio. There are many good back surgeons who do fusions, but finding a scoliosis specialist has been challenging.
Good luck to you!

lordswild
07-22-2014, 09:23 PM
Where do you live?

Melissa


I live in NC on the NC/SC border--about 50 miles from Wilmington and 40 from Myrtle Beach...

scooter950
07-22-2014, 09:34 PM
oh how terribly disappointing. and to hear it the way you did- with what you remembered Dana the PA saying- oh! As if you are such a high risk case... you know, when my husband & I were trying to conceive, we went to infertility cinics and we were told a smiliar message- "the clinic has a 90% success rate and you do not fit the candidate status we are looking for". So in other words- the reason those clinics had a high success rate is because they would not accept couples with actual bonafide infertility issues. sort of the message you received./ I am so sorry for this set back, it's not as if you "want" this surgery, but you are choosing to be pro-active and take control of the scoliosis while you still can. I pray you find a good qualified surgeon you can trust. Soon. so sorry you must start the search again.... Jamie in TX

lordswild
07-22-2014, 09:35 PM
Peg

That's just it--my health has never been in question by any other doctor--Brigham, Kurd (who took over for Brigham) or Hey--and especially by any of my routine doctors--and it was never in question when I went to Phil.

It has always been just the opposite...

mabeckoff
07-22-2014, 10:25 PM
I would strongly suggest Dr Lloyd Hey in NC.
He is an excellent surgeon

Melissa

babyboomer16
07-22-2014, 11:43 PM
Hi,
I don't know for sure if you have read any of my posts. I can tell you I had a very severe spinal deformity called "Flatback syndrome, a saggital imbalance. I had three surgeries and things kept getting worse. I was bent over 45degrees and the pain was excruciating. I kept seeing Dr. Lenke's name on this web site.
I was seeing a spinal surgeon at university of Minn. Spine Center. Butt they were only telling me I would more than likely end up in a wheel chair. I saw Dr. Lenke's web site and read all about some of his technekes he used. But he only takes the most serious of situations.
So I sent in my records to his medical asst. and within a couple weeks I was in. I had to see him once(13hrs one way). He scheduled me for surgery on Oct. 31st 2013. And all is great. There's more to the story, but I just think ou owe it to yourself to see this man. I was 60yrs. Old. I know he does any age as long as they can withstand the surgery.he's located in St. Lewis Mo. At the Univ. of Washington. Center for Advanced Medicine. If you have any questions I would be glad to answer. My surgery was 15 hrs. long. He is in my book , someone to go to if you are in a desperate situation. Hoping the best for you!! Linda

springchicken
07-23-2014, 07:24 AM
That's awful, lordswild! I hope you can find a good surgeon quickly. I would think Dr. Lenke would be a good choice...

PeggyS
07-23-2014, 08:02 AM
I sent my records to Dr. Lenke, after reading so many positive reports on this forum. I had good news/bad news: my 75* curve, etc wasn't 'bad' enough for 'him' to do the surgery! I was referred to dr. buchowski, who was trained by Lenke. So . . . I'd say, Dr. Lenke appreciate difficult cases. Send in your records to be evaluated!

lordswild
07-23-2014, 09:57 AM
Linda

Thank you for your comments--they are very helpful...I took everything you sent right in...

In 2012 Dr. Brigham stated that I have idiopathic and DeNovo scoliosis with severe loss of sagittal, with some coronal, imbalance along with flat back and was 70/@40 at that time and near critical stenosis at L4-5. Dr. Hey concurred--or rather his newly hired PA in whose hands he left my appointment after shaking my hand, turning and leaving for surgery (that was my appointment with him--all of my cousin's friends who have needed surgery have gone to him and I know that some on this site have had very good experiences with him, also.). And, I am in some rip-roaring pain a great deal of the time despite very strong medication (which I try to take very little)...Linda suggested that I go to a pain management specialist as soon as I could--and I am going to...my general practitioner tries to do everything and this is one "thing" that didn't make it...I was simply ignorant...

I will appreciate any further comments that you will share...

Thank you
Martha

The person who called me--and, by the way, I saved that message--also stated that any time a person is under anesthesia over 4/5 hours there is the risk for dementia and that being under anesthesia for 10 hours and my age would "qualify" me for dementia. A long time friend of mine is Chief of Anesthesiology at one of the nearby hospitals. I am going to contact him about this. He is super sharp--West Point grad and impeccable medical credentials (and very funny outside of business but VERY serious about medical business). I know he will give me the very truth...

jrnyc
07-23-2014, 05:12 PM
i think that phone call was pretty disgraceful...
a "reputation to uphold" ??? "too expensive" ??...everything she said sounds sickening...they are worried about their reputation more than they are worried
about the patient, it seems to me...and worried about their finances as well.

maybe you escaped being operated on by a surgeon without enough experience in these kinds of scoliosis surgeries...i would strongly suggest at least one or two more opinions...

Dr Lenke is well known for doing cases that are most difficult, as Linda mentioned...
as long as you are willing to travel, i think you will be able to find an excellent surgeon, one who does many many scoliosis surgeries as a specialty...
personally, i do not recall Dr Arlet's name being mentioned very often on this forum...
there are surgeons who operate on older patients...i know Dr Anand in LA does, because i spoke to a couple of them on the phone...and there are other surgeons in other locations.

i am so sorry for the way the assistant spoke to you...if i were you i would be relieved that i did not have the surgery with that surgeon...and won't have to deal with that attitude, and that office again.

jess...and Sparky

loves to skate
07-24-2014, 08:09 PM
Linda

Thank you for your comments--they are very helpful...I took everything you sent right in...

In 2012 Dr. Brigham stated that I have idiopathic and DeNovo scoliosis with severe loss of sagittal, with some coronal, imbalance along with flat back and was 70/@40 at that time and near critical stenosis at L4-5. Dr. Hey concurred--or rather his newly hired PA in whose hands he left my appointment after shaking my hand, turning and leaving for surgery (that was my appointment with him--all of my cousin's friends who have needed surgery have gone to him and I know that some on this site have had very good experiences with him, also.). And, I am in some rip-roaring pain a great deal of the time despite very strong medication (which I try to take very little)...Linda suggested that I go to a pain management specialist as soon as I could--and I am going to...my general practitioner tries to do everything and this is one "thing" that didn't make it...I was simply ignorant...

I will appreciate any further comments that you will share...

Thank you
Martha

The person who called me--and, by the way, I saved that message--also stated that any time a person is under anesthesia over 4/5 hours there is the risk for dementia and that being under anesthesia for 10 hours and my age would "qualify" me for dementia. A long time friend of mine is Chief of Anesthesiology at one of the nearby hospitals. I am going to contact him about this. He is super sharp--West Point grad and impeccable medical credentials (and very funny outside of business but VERY serious about medical business). I know he will give me the very truth...

Wow, I must be truly demented. My surgery lasted 12 hours and I was 67 years old at the time. I suppose dementia is always a possibility along with many other serious outcomes. It sounds like this Doctor isn't very experienced. Dr. Rand in Boston did my surgery, but now I live in N. Carolina and would definitely go to Dr. Hey if I needed any more back surgery. How old are you anyway?
Good luck and I hope you find the right surgeon for you. Sincerely, Sally

susancook
07-28-2014, 09:44 PM
Shame on Dr. Arlet and his PA!

I was amazed that he was dismayed my your volume of papers! I bring along a 3 ring notebook full of articles and lab/X-rays and questions. He probably would have called a psych consult on me!

So sorry that this happened to you. Us older folks do have some additional challenges going into surgery, but it certainly is not contraindicated. I think that Linda said that they have had many older persons who have had surgery at UCSF and that she cannot remember anyone dying. You sound very healthy and probably have lots of good years ahead of you. And, you want to live them without pain!

Keep us posted!

Susan

titaniumed
07-29-2014, 12:02 AM
Lord

Rejection is such a slap in the face and why some surgeons just don’t say, “I don’t want to do it” is beyond me......Maybe its time to move on...and no biggie really..... its always good to have another’s opinion anyway....

Its hard to say why a person gets rejected by well known surgeons or scoliosis spine centers....but we have seen all of them, including Linda, move on and find the right surgeon. I guess its just part of the doctor tour....I have also heard the death and destruction story before and have had surgeons shake their heads for a long time speechless. This is where the horse blinders go on, and you move on with your agenda. We need to be strong through all of this....

Having your x-rays burned to disc is a good thing since you can simply e-mail. If you have had x-rays taken, you can go there and have them burn you a disc. It only takes a few minutes....MRI’s and CT’s can also be done. I have all my diagnostics on disc now since I have had surgeons retire and throw all my records in the trash. You paid for them so they are yours, don’t let the radiologists give you any guff about this. The last young bucko who told me I couldn’t have my CT reports got an ear full. (smiley face) Radiologists also write up a complete report and look things over quite well. They leave no stones unturned in their reports and report every thing they see.

E-mail your diagnostics for an evaluation without travel.....After calling on the phone, sending this data makes things easy....

Many have traveled for their surgeries to be with the right team. You also need to be comfortable with your choice.

Ed

lordswild
08-01-2014, 10:26 AM
Ed: Thank you so much for the reply.

I have made it a habit over the years to make sure I get my copy/x-ray films/and now discs but the Radiology Department here does not have the ability to email the disc business so I had to get my information to my potential (hopefully) surgeon by snail mail.

I am willing to travel. My surgeon who died was at Charlotte at the Carolinas Hospital System and there is a surgeon on the top 50 site who is at Duke but I have never heard of him--they are the closest--I do not know of any in SC. Linda has very good feelings about Kebaish and McAfee both of whom are in Maryland. A younger woman here on the beach has met another woman who had surgery with a surgeon in Texas, Dr. Geck. She said she was astounded at the results he obtained with what he had to work with--apparently she was very, very compromised.

Nevertheless, once I get on an airplane, whether it goes 500 or 2000 miles is really a matter of time--all else is basically the same.

If you know of any one who is willing to perform surgery on someone in my age group (I just turned 76) but with very good health, please send the name--at this point, I just want to get on with it (this means I will have to be careful that I don't just "jump in the boat" so to speak)...I will very much appreciate any input...

By the way, I have spent many, many days and times in Reno. I have a cookbook (I collect them) from the Echevaras Basque restaurant there. I gave it to my son--as a three year old, he had a ball there. My ex husband was a geologist and we were in Hawthorne on a world wide project for nearly a year (the last) time. We took the core in each week. We lived in Tucson and I would move back in a minute if possible.

titaniumed
08-01-2014, 07:28 PM
Lord

Did you go and see Dr Hey at some point? Because that’s what I would do. Its easy, you can hop in the car and be up there in no time.....I would want his opinion if I lived in North Carolina. If you did, what did he say?

How long have you been waiting? If you are 76, you made it a long time.....and how bad is your pain? 1-10 scale? Are you having any major pain events? Major means almost running to the hospital begging to be knocked out.....

I have eaten at that restaurant years ago.....there are many Basque here in Nevada from the 1800’s when they were giving land away just to get anyone to move here. Its been a long struggle for the politicians of Nevada to get people to move here in the last 150 years. The Comstock financed the north during the Civil war, that gold changed the history of the US, but the boom ended and many moved on.

Ed

lordswild
08-01-2014, 09:50 PM
Ed

I don't want to get into bashing a doctor so these are the bare bones: I made an appointment with Dr. Hey, was not given the correct directions by his office, arrived ahead of time any way but behind the appointment after me so I was put at the end of the "line". That appointment saw Dr. Hey. When I was called and went in, I was turned over to a young man who said he was trying to decide if he should go into medicine and then Dr. Hey's brand spanking new PA came in. Finally, Dr. Hey popped in introduced himself and said he was leaving for surgery. The PA spoke to me, ordered X-rays, I was taken to Duke Hospital (Raleigh) and then to my car--by then very late in the afternoon. I had been told that certain follow up would be done but it was not. There was no opinion or discussion.

Recently, I met a young woman about my daughter's age who had revision surgery with him and would not make the same choice again.

I had already seen Dr. Brigham and decided he was the one I wanted to do my surgery. I heard about him when I first joined the Forum way back. I saw him in 2002 and really liked him. He said I would never have to have surgery but then some events intervened and my issues worsened dramatically. I described what my diagnosis was in 2012 in the reply to Sally (?). Dr. Brigham died in 2012 and I learned of this when I called to firm up a date for surgery. I had just seen him.

I was put in a cam walking boot in 2010 and in two days, I was in morbid pain and it has never let up--despite my very high tolerance for pain. In addition, I have become more "warped". I do not do any thing I used to do--ever--I cannot.

lordswild
08-01-2014, 09:54 PM
Ed...

It was a ten hour round trip to see Dr. Hey...

titaniumed
08-02-2014, 12:29 AM
Lord

it sounds like you had a little office confusion....which can happen. I’ve had it happen since these scoli surgeons are usually very busy people. I do know that when patient communication lacks with a surgeons assistant, that can throw the old stop sign up quickly. I have also had my old surgeon die on me....they threw my diagnostics and records in the dumpster. Oh well....If I would have shot x-rays, I would have called back to find out if Dr Hey had drawn any conclusions. Since diagnostics and pre surgical tests have to be done, there are times we have to hang around a spend many hours getting all of this done. Its really nothing compared to a multi-year recovery....and this takes commitment. Yes, means yes....Scoliosis surgery is never an easy thing.

All surgeons can have mixed reviews, good and bad and not every case goes along just hunky dory since these surgeries can have factors beyond their control....you know this. Some of the better surgeons that operate on difficult cases can have a few dings on their records. This is understandable. Revision surgeries can also be problematic especially dealing with scar tissue.

Having a surgeon closer will be easier and I was lucky in that regard. I also had a surgeon that “looked” like he was 32 years old, which had me thinking pretty hard, but I chose him after 2-1/2 years of talks and meetings. Dr M was very straight with me, and was in no rush, that’s for sure. I would have backed off if it had been the other way. Rushing into surgery isn’t the wisest thing...Multiple surgeons are also wise, its something to ask about. I had 2 scoli surgeons and a vascular surgeon hovering over me. I came out great, I couldn’t have asked for a better result. It was a 2 year recovery.

We have seen many here on the forum that have traveled long distance for their surgeries. I guess for the right match, its worth it. There are many good scoliosis surgeons these days, you can pick of the SRS physicians locator, or decide off one of the names mentioned here on this forum. You can e-mail or snail mail your x-rays to Dr Pashman in LA, he does or did consults in this manner....simply call his office.

http://www.srs.org/

http://www.srs.org/find/

Ed

jrnyc
08-02-2014, 02:09 AM
hi lordswild
if you are willing to travel, why not call a few offices to see if those surgeons have any age restrictions as to who they accept as patients...?
perhaps call Dr Anand's office in Los Angeles....or see if there is a surgeon set to take Dr Boachie's practice in NYC...or call Dr Rand, Sally's doctor in MA....

calling a few of the top scoli surgeons might be a place to start...
and if you call and ask some questions first, you might be saving yourself wasted travel....time, energy, money and the pain of sitting on a plane for hours.

just a suggestion.

best of luck in your search
jess...and Sparky

lordswild
08-02-2014, 01:16 PM
Jess--thank you for replying and the suggestions...

Actually, that is exactly what I am doing.

I contacted one surgeon, sent what I believe to be pertinent information, heard back and sent the X-rays done May 20 in PA, and am now WAITING--the worst part.

But I am not only waiting, I am waiting, exploring options, taking in what the forum says, taking in the surgeons the forum uses, researching on the inet and trying to narrow my options for, hopefully, acceptance.

By the way, my name is Martha...I kept meaning to get to this but was more concerned with the "bomb" dropped on me...lordswild is a name/designation I came up with when many people at the stable where we were boarding continually remarked that my most beloved horse, Cherokee, was a handful, wild, etc--so, I said to him, "Not to worry...you're my Lord Wild." He was noble, beautiful and talented. Then, we bought another horse and there were the Lords Wild. It became our word...the name for our farm, the internet thingy, etc One of my goals is to at least sit my horse once more...

I digressed...

I will be greatful for any further information or suggestions...

lordswild
08-02-2014, 01:28 PM
Ed

I know...everyone has something they wish had never occurred...

My friend who had revision surgery has significant pain and says she has had no support for this despite requests...

Actually, Dr. Brigham lost two patients due to their being on pain medication--do not know what amount--going into surgery. He told me to wean myself off prior to surgery...

And my Grandfather spoke to me of an issue--the death of a family friend-- that still concerned him despite the fact that everyone agreed he did more than all that could have been done...

titaniumed
08-02-2014, 02:22 PM
Martha

Through the years reading here we have seen incredible revision surgeries done and one jaw dropper that sticks in my mind is a poster named “Nanlo”. Of course there are others here, but she has got the “OMG” x-rays.....Sometimes, it takes effort finding the right surgeon. Those guys that did her pulled it off with flying colors.....she hasn’t posted in a few years, you could PM her or search her threads....

My medication intake prior to my surgeries was minimal. I took NSAID’s sparingly for pain, Celebrex, Naproxen, Bextra, (Blacklisted now) and Diclofenac. When I went into my surgeries, I was clean. I didn’t want to complicate matters in this regard....My first usage of opoid’s came when I had my surgeries, and had the strongest meds.....weaning off after, was a goal that took effort. (short and sweet answer)

I have a funeral to go to tomorrow.....a 38 year old friend who we did multiple interventions on.... I’m in the same situation as your Grandfather right now.
------------------------------------------------------------------------------------------
Here is Dr Pashman’s site in case you have not seen it....
http://espine.com/scoliosis/adult-idiopathic-scoliosis/

His cases.....
http://espine.com/scoliosis/adult-scoliosis-cases/

Ed

susancook
08-02-2014, 03:37 PM
Martha

Through the years reading here we have seen incredible revision surgeries done and one jaw dropper that sticks in my mind is a poster named “Nanlo”. Of course there are others here, but she has got the “OMG” x-rays.....Sometimes, it takes effort finding the right surgeon. Those guys that did her pulled it off with flying colors.....she hasn’t posted in a few years, you could PM her or search her threads....

My medication intake prior to my surgeries was minimal. I took NSAID’s sparingly for pain, Celebrex, Naproxen, Bextra, (Blacklisted now) and Diclofenac. When I went into my surgeries, I was clean. I didn’t want to complicate matters in this regard....My first usage of opoid’s came when I had my surgeries, and had the strongest meds.....weaning off after, was a goal that took effort. (short and sweet answer)

I have a funeral to go to tomorrow.....a 38 year old friend who we did multiple interventions on.... I’m in the same situation as your Grandfather right now.
------------------------------------------------------------------------------------------
Here is Dr Pashman’s site in case you have not seen it....
http://espine.com/scoliosis/adult-idiopathic-scoliosis/

His cases.....
http://espine.com/scoliosis/adult-scoliosis-cases/

Ed

Ed, First, sorry about the loss of your friend. I am sure that his/her family was glad that you had tried to help, but sometimes, help just isn't enough. Glad that you tried.

I looked at Dr. Pashman's site and it is very interesting! But, I found that the writeup with the patient did not appear to be correct. The paragraph would describe that the treatment was "fusion from T3 to pelvis" and the after picture showed only a few vertebrae with instrumentation. Hmmmmm....wonder what's going on?

Susan

titaniumed
08-02-2014, 10:48 PM
Which example?

#23 gets the hardware award for sure....

Ed

susancook
08-03-2014, 03:30 AM
Maybe "to the pelvis" and "pelvic fixation" mean something else in Dr. Pashman's language. Just starting, #6, 9, 11,12....and many others when he says that he is going "to the pelvis" or "pelvic fixation", I see lots of uninstrumented [is that a word?] lumbar vertebrae! What am I missing here?

Just when a person thinks that she understands what is going on.....

Susan, seemingly not understanding some language

susancook
08-03-2014, 03:41 AM
Martha, I hope that you are finding your way around the scoliosis surgery world. I do not know anything about the East Coast, but the 2 spine surgeons that I saw, Dr. Robert Hart in Portland, and Dr. Serena Hu in Palo Alto at Stanford both see us older folks. I know that the MDs at San Francisco also see older folks and Linda is the best resource for them.

Best of luck and I hope that you find resolution of your pain.

Susan

lordswild
08-03-2014, 11:04 AM
Ed...

I am so very sorry for your loss...just knowing you through your messages, I KNOW you did all you could...

How did you know Dr. M was the doctor for you? Was he very well established in the scoliosis world or relatively new? If relatively new, how did you make sure, satisfy yourself that he was up to the job? Was the 21/2 years spent making sure he was the surgeon for you?

I did not continue with the surgeon who took Dr. B's "place" and was hired by him b/c he was 35 (experience???) and he said he had performed about 50 surgeries like mine (experience/outcome). I did, however, really like him--I just chickened out due to the 50 surgeries...Dr. Kurd is his name--he is at Carolinas at Charlotte. My cousin was with me and really liked him also. A surgeon at Carolinas who used to do scoliosis surgery with Dr. B and to whom I was referred by the surgeon I had seen at MUSC, indicated to me that he felt he was quite capable.

Of course, my great concern is choosing someone that is not capable but is charming.

In other words, what is the tipping point for believing this is the surgeon for me???

I contacted Dr. Boachie's office last week. The appointment line person volunteered several names--one was Dr. Chewning in the Western part of NC--he used to operate with Dr. Brigham. Linda very kindly told me what she had been hearing of Dr. Kebaish at Johns Hopkins and when I mentioned that I had been told of him, the appointment line person was enthusiastic about him also. I plan to contact him. (My grandfather was in med school at Johns Hopkins.)

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.

lordswild
08-03-2014, 11:09 AM
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

susancook
08-03-2014, 07:52 PM
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

susancook
08-03-2014, 08:22 PM
“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

jrnyc
08-04-2014, 12:12 AM
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

jackieg412
08-04-2014, 02:53 PM
Well said Susan. Great advice!!!!

jackieg412
08-04-2014, 02:55 PM
Well said Susan. Great advice!!

titaniumed
08-04-2014, 10:12 PM
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

LindaRacine
08-04-2014, 11:39 PM
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

titaniumed
08-05-2014, 11:49 PM
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

jackieg412
08-06-2014, 09:31 AM
I like the patient panel idea. We do know,first hand what all this is like.

lordswild
08-07-2014, 07:25 PM
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...

lordswild
08-07-2014, 07:27 PM
And, come to think of it, this is basically how I connected with Dr. Brigham...

lordswild
08-08-2014, 11:28 AM
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.

susancook
08-09-2014, 12:40 AM
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

leahdragonfly
08-09-2014, 10:00 AM
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.

lordswild
08-09-2014, 10:21 AM
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

Irina
08-09-2014, 11:09 AM
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!

lordswild
08-09-2014, 04:44 PM
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

lordswild
08-09-2014, 04:47 PM
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?

lordswild
08-09-2014, 04:52 PM
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

lordswild
08-09-2014, 05:01 PM
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

jrnyc
08-09-2014, 05:16 PM
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

lordswild
08-09-2014, 09:06 PM
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

titaniumed
08-10-2014, 12:10 AM
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

leahdragonfly
08-10-2014, 09:50 AM
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/services/providers/index.cfm?personid=314

Here is a link: http://www.ohsu.edu/xd/health/services/spine/getting-treatment/ask-the-spine-experts/index.cfm -This one is a podcast or video of Dr Hart giving a talk about treatment options for scoliosis in adults.

jrnyc
08-10-2014, 02:26 PM
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

lordswild
08-10-2014, 06:50 PM
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

lordswild
08-10-2014, 06:59 PM
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

lordswild
08-10-2014, 07:28 PM
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

jrnyc
08-10-2014, 10:13 PM
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

Irina
08-11-2014, 12:31 AM
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

Martha,

My doctor told me that there are no guarantees and she even asked me what would I think if I end up in more pain than before. She told me that some of her patients reported that they traded one pain for another. I was lucky - all my presurgical low back pain is gone, but I have some issues with my right leg... it tingles when I am in bed and feels a little off. I didn't have that before the surgery...

susancook
08-11-2014, 03:11 AM
There is no guarantee concerning the alleviation of pain with fusion surgery. There are statistics about patients after scoliosis fusion that have more, less, and the same pain. I do not remember them, but they are no doubt many places on this forum.

I am very pleased with my surgical results and my preop pain which truly limited my quality of life was alleviated with the surgery.

Good luck, Susan

mabeckoff
08-11-2014, 10:36 AM
Scoliosis surgery is not to take away pain. It is to stop progression of your curves

Melissa

susancook
08-11-2014, 03:53 PM
Melissa,

Scoliosis comes in many forms with many etiologies. Since my scoliosis was secondary to multiple degenerative/ stenotic processes in my spinal vertebrae, my surgery was to alleviate pain. The only reason that I was admitted to the "Scoliosis Club" was because my discs collapsed asymmetrically. If they had collapsed symetrically, i would just be 4 feet tall and in pain. Certainly, there may have been a future worsening of my curve with time on the future, I doubt that it would have progressed a whole lot. The possibility of future degeneration in my spine seems inevitable, especially with my osteoporosis ( the Bain of many aging folks). Most of my surgery involved repair and rebuild while maintaining function.

I remember many conversations on line here with many of you who seemed to me to wonder why I was even in pain, much less seeking a surgical resolution. When I asked my surgeon on a scale of 1 to 10, how difficult did she say that my spinal surgery wold be and she said, "8". That blew me away from what I understood from this Forum.

Susan