Telephone call

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

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.

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

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.

Ed...

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

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

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

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...

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...

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.
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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

Quote:

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Originally Posted by titaniumed

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.
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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

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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

Which example?

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

Ed

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

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

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.