Telephone call

[lordswild]

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]

Where do you live?

Melissa

[JenniferG]

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]

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]

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]

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]

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]

I would strongly suggest Dr Lloyd Hey in NC.
He is an excellent surgeon

Melissa

[babyboomer16]

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]

That's awful, lordswild! I hope you can find a good surgeon quickly. I would think Dr. Lenke would be a good choice...

[PeggyS]

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]

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]

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]

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]

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