Finding a surgeon

[bentRN]

I have read through the posts about various surgeons, and continue to do so. I have a question about the SRS "find a specialist" application. I contacted one of the surgeons listed, in my area, who was also recommend by an RN associate, and after he looked at my x-rays, he referred me to someone else, who he said does the "more complex" surgeries. This person is a neurosurgeon, very young looking, and not on the SRS list. Any input?

Now that Dr. Lenke is in NY, what other states have excellent adult scoliosis surgeons? My surgery will be the anterior/posterior approach, T4 to S1. I am seeking current information.

Thanks to all!

[titaniumed]

Bent, My surgeon wasn’t on the SRS list, but did his residencies and fellowships at TCSC which was where the SRS was founded.

He was also young at the time which had me concerned. I had to weigh the older 10,000 surgeries under his belt vs the newly trained in new techniques. I picked younger....only because I believed in him.

USCF has done a study on “multiple” surgeons being an advantage. I had 2 scoliosis surgeons and a vascular surgeon for my ALIF. The team means a lot.....Scoli surgeons like to have vascular docs hanging around for ALIF’s

How many levels on your ALIF? Will they use BMP? I would address the autograft/allowgraft question. I had no bone used in my surgeries....All synthetics, and that was 8-1/2 year ago. Does anyone dig on the hip anymore? I think this might be in the past now.

Most of the scoliosis surgeons are trained at the main centers, UCSF, TCSC, HSS, or in St Louis. My second scoliosis surgeon was trained in Indianapolis.

Training and experience means a lot....where its done, who its with, history, and so forth.

Others should chime in....

Deep breaths...Welcome to the forum

Ed

[susancook]

My understanding: There are SRS spinal surgeons that operate on:
- Kids and or adult
- "simple" and/or "complex"
- "deformity" vs ......I don't know what the alternative is?

I was told that since I had older adult degenerative scoliosis, that I should seek an orthopedic deformity spine surgeon who operates on a lot of older persons.

It is my understanding that orthopedic spine surgeons can repair both the bony deformity (scoliosis) as well as the neuro problems such as nerve compression from stenotic bone, disc problems, collapsing degenerative vertebrae, etc.

I agree that finding just who should do the surgery is a challenge. I did consult with a delightful minimally invasive neurosurgeon who wanted to repair my Lumbar 4-5 disc problem. That was just a part of my problem and did not address the kyphosis in my thoracic area.

Good luck! Hopefully Linda or Ed or others will share their knowledge.

Susan

[bentRN]

My understanding: There are SRS spinal surgeons that operate on:
- Kids and or adult
- "simple" and/or "complex"
- "deformity" vs ......I don't know what the alternative is?

I was told that since I had older adult degenerative scoliosis, that I should seek an orthopedic deformity spine surgeon who operates on a lot of older persons.

It is my understanding that orthopedic spine surgeons can repair both the bony deformity (scoliosis) as well as the neuro problems such as nerve compression from stenotic bone, disc problems, collapsing degenerative vertebrae, etc.

I agree that finding just who should do the surgery is a challenge. I did consult with a delightful minimally invasive neurosurgeon who wanted to repair my Lumbar 4-5 disc problem. That was just a part of my problem and did not address the kyphosis in my thoracic area.

Good luck! Hopefully Linda or Ed or others will share their knowledge.

Susan

Thanks, Susan! I do see that the listings include adult scoliosis and spinal deformity. That is noted on one of the surgeons I am considering. The original surgeon I saw clearly had no desire to do the surgery, telling me to wait until I had neurological symptoms. Dr. Kahn is the one who referred me on. I suspect he may be older and that is why he referred me.

[bentRN]

Bent, My surgeon wasn’t on the SRS list, but did his residencies and fellowships at TCSC which was where the SRS was founded.

He was also young at the time which had me concerned. I had to weigh the older 10,000 surgeries under his belt vs the newly trained in new techniques. I picked younger....only because I believed in him.

USCF has done a study on “multiple” surgeons being an advantage. I had 2 scoliosis surgeons and a vascular surgeon for my ALIF. The team means a lot.....Scoli surgeons like to have vascular docs hanging around for ALIF’s

How many levels on your ALIF? Will they use BMP? I would address the autograft/allowgraft question. I had no bone used in my surgeries....All synthetics, and that was 8-1/2 year ago. Does anyone dig on the hip anymore? I think this might be in the past now.

Most of the scoliosis surgeons are trained at the main centers, UCSF, TCSC, HSS, or in St Louis. My second scoliosis surgeon was trained in Indianapolis.

Training and experience means a lot....where its done, who its with, history, and so forth.

Others should chime in....

Deep breaths...Welcome to the forum

Ed

Your acronyms are making my head spin. I am a nurse, but now I will confess, in psych! Your reply is great, thought provoking and specific! My husband can tell me where TCSC and HSS are. I've had one visit with one real surgeon, he's the one who explained that I have two curves, one thoracic (~55*,) one lumbar (~75*.) I have my next visit on 4/29, but am seeing a neuro surgeon on 3/29. I was told there would be a vascular surgeon there as well. I was told t4 to s1. That's all. I really don't want hip bone taken, I have heard that is very painful. I plan to ask about that. BMP is basic metabolic panel to me!

I am still dealing with the grief process. I started having back pain 3-1/4 years ago, and 5 mo ago, I learned the extent of my problem. I am angry that no doctor, in my whole life, noted that I had any issue with scoliosis until I was 58!

Thank you very much! I am anxious to move ahead!

[LindaRacine]

BentRN...

It's fairly common for young surgeons to not belong to the SRS at the beginning of their careers. It's relatively expensive for them to join, and I think they often want to wait and see how much deformity surgery they'll be doing.

Find out where your surgeon did his fellowship. There are certain fellowships where the fellows get a lot more practice in adult deformity than others. Though not a complete list, the best training hospitals in terms of adult deformity are probably (in no particular order):

Hospital for Special Surgery (New York)
Washington University (St. Louis)
Leatherman (Kentucky)
Columbia - not necessarily now, but in the near future(New York)
UCSF (San Francisco)
Rothman (Philadelphia)
Emory (Atlanta)
Jefferson (New York)

Essentially every big deformity surgery has two surgeons, although some private surgeons routinely operate with a PA. At UCSF, a major percentage of deformity surgeries are done by co-surgeons that are both attendings.

Hope that helps.

--Linda

[LindaRacine]

Bent, My surgeon wasn’t on the SRS list, but did his residencies and fellowships at TCSC which was where the SRS was founded.

He was also young at the time which had me concerned. I had to weigh the older 10,000 surgeries under his belt vs the newly trained in new techniques. I picked younger....only because I believed in him.

USCF has done a study on “multiple” surgeons being an advantage. I had 2 scoliosis surgeons and a vascular surgeon for my ALIF. The team means a lot.....Scoli surgeons like to have vascular docs hanging around for ALIF’s

How many levels on your ALIF? Will they use BMP? I would address the autograft/allowgraft question. I had no bone used in my surgeries....All synthetics, and that was 8-1/2 year ago. Does anyone dig on the hip anymore? I think this might be in the past now.

Most of the scoliosis surgeons are trained at the main centers, UCSF, TCSC, HSS, or in St Louis. My second scoliosis surgeon was trained in Indianapolis.

Training and experience means a lot....where its done, who its with, history, and so forth.

Others should chime in....

Deep breaths...Welcome to the forum

Ed

Hi Ed...

I think just about every ALIF opening is done by a vascular surgeon... at least here in the U.S. It would be really foolish to try the approach without one, as even a small mistake could easily result in a patient's death.

Yes, there are doctors who still routinely use iliac crest bone graft. It greatly increases fusion rate, so some surgeons feel that it's worth the risk of additional pain.

J Neurosurg Spine. 2014 Oct;21(4):595-600. doi: 10.3171/2014.6.SPINE13902. Epub 2014 Jul 11.
A retrospective study of iliac crest bone grafting techniques with allograft reconstruction: do patients even know which iliac crest was harvested? Clinical article.
Pirris SM1, Nottmeier EW, Kimes S, O'Brien M, Rahmathulla G.


OBJECT:
Considerable biological research has been performed to aid bone healing in conjunction with lumbar fusion surgery. Iliac crest autograft is often considered the gold standard because it has the vital properties of being osteoconductive, osteoinductive, and osteogenic. However, graft site pain has been widely reported as the most common donor site morbidity. Autograft site pain has led many companies to develop an abundance of bone graft extenders, which have limited proof of efficacy. During the surgical consent process, many patients ask surgeons to avoid harvesting autograft because of the reported pain complications. The authors sought to study postoperative graft site pain by simply asking patients whether they knew which iliac crest was grafted when a single skin incision was made for the fusion operation.

METHODS:
Twenty-five patients underwent iliac crest autografting with allograft reconstruction during instrumented lumbar fusion surgery. In all patients the autograft was harvested through the same skin incision but with a separate fascial incision. At various points postoperatively, the patients were asked if they could tell which iliac crest had been harvested, and if so, how much pain did it cause (10-point Numeric Rating Scale).

RESULTS:
Most patients (64%) could not correctly determine which iliac crest had been harvested. Of the 9 patients who correctly identified the side of the autograft, 7 were only able to guess. The 2 patients who confidently identified the side of grafting had no pain at rest and mild pain with activity. One patient who incorrectly guessed the side of autografting did have significant sacroiliac joint degenerative pain bilaterally.

CONCLUSIONS:
Results of this study indicate the inability of patients to clearly define their graft site after iliac crest autograft harvest with allograft reconstruction of the bony defect unless they have a separate skin incision. This simple, easily reproducible pilot study can be expanded into a larger, multiinstitutional investigation to provide more definitive answers regarding the ideal, safe, and cost-effective bone graft material to be used in spinal fusions.

--Linda

[Irina]

[QUOTE=LindaRacine;165847]Hi Ed...

I think just about every ALIF opening is done by a vascular surgeon... at least here in the U.S. It would be really foolish to try the approach without one, as even a small mistake could easily result in a patient's death.

Wow, Linda, I have not realized that ALIFs were that dangerous. I always thought that posterior part was the bigger and riskier portion of a staged procedure.

[susancook]

I am still dealing with the grief process. I started having back pain 3-1/4 years ago, and 5 mo ago, I learned the extent of my problem. I am angry that no doctor, in my whole life, noted that I had any issue with scoliosis until I was 58!

Thank you very much! I am anxious to move ahead!

Your comment brought back memories. I had physical therapy for a couple of years and finally I told my PCP that I did not think this my pain was a little bit of sciatica. I knew the radiologist that worked where I had my xray, so asked the tech to page him to read it for me immediately. He looked at my xray, which showed a scoliosis curve and he said, "you mean that you didn't know? . I was blown away!
Another bent RN

[titaniumed]

Sorry Bent, some of my posts are done quickly...and the lingo rolls off my fingertips like my old east coast NJ accent. (smiley face) Hey! Speak English! LOL
I hope I don’t have all the Jersey readers mad at me...He he

I can understand the grief that you feel....and how you could slip through the cracks with a 75 degree lumbar. These things don’t happen overnight.

I was also mad at my old GP many years ago in the 60’s, accepted it since I had no choice, and actually waited 38 years for my surgeries.....Pain tipped the scales of decision. The timing was ok and it all worked out. I am one of the happier scoliosis patients out there and have adapted well.

I guess our biggest fears are the unknown. I had no idea what was eventually going to happen over the last 41 years in living with scoliosis, I did know that I was a surgical candidate back then because every doctor told me so. At that time, the technology science and understanding didn’t exactly convince me that surgery was the answer, so these unknowns are what drive the quest for understanding and knowledge as far as scoliosis is concerned. We didn’t have a scoliosis forum online to talk to others and it truly was a closed world. We are fortunate that we have Linda as our moderator......she works at UCSF at the spine center in San Francisco.

TCSC or Twin Cities Scoliosis Center is in Minneapolis. This is where many of the elder “Guru’s” of scoliosis were trained over the last 50 years.
HSS is Hospital for Special Surgery in NYC. Started around the Civil War era, a leading center for scoliosis.

Accepting scoliosis surgery is not an easy thing.....I waited just about as long as I could and just couldn’t continue on with the amount of pain I was in. There are many adults here with the same story so your not alone. Ask any questions you wish, here or use PM private mail.

Finding the right surgeon is important. You have to be comfortable with this person, and have good communicative skills. When you go in, you will hear terms you never heard before, so it can be overwhelming especially in pain. Bring your husband along. Establish e-mail contact with the PA, nurse, or assistant. This is the easiest way to ask questions later after you leave.

Many surgeons can be short and to the point. There will be questions that you wont know to ask, and many wont volunteer information. Usually, you will hear the words “Any questions?” I heard this from my urologist when I was in trouble with a stone. Heck, I don’t know anything about that. “you have to do WHAT? Use a Uterowhat with a laser? I think I’m going to die now....(smiley face) That all worked out ok.

It might not be a bad idea to read David Wolpert’s book. He did a good job on it.... You can buy it through NSF here....
http://www.scoliosis.org/shop/product-category/books/

Deep breaths

Ed

[titaniumed]

Hi Ed...

I think just about every ALIF opening is done by a vascular surgeon...

I knew... Sometimes I slang my writing on purpose....

I own two anterior surgery books on ALIF scoliosis surgery procedures.

I needed to know and find it incredibly interesting after discussing with my vascular surgeon who stated that since the peritoneal cavity was not entered, it was to be moved to the side using retractors. He acted like it was no problem, but he goes everywhere if you know what I mean. He started hours before my scoliosis surgeons came in.

These days there is more information on ALIF online, years ago not so much.

Ed

[leahdragonfly]

I had an open ALIF too with my last broken rod revision 6 months ago, to put a cage at L5-S1 and fuse from the the front. I have a vague memory from post-op day one or two where the surgical residents were rounding on me at the same time as the spine team came by...I remember the surgical resident bragging to the spine resident that they did my ALIF exposure in 10 minutes! I remember thinking it was really quick at the time, but I do know how those guys roll. And my incision is 5-6 inches long. I was most worried about the post-op pain from the ALIF with my last revision, but it really wasn't as bad as I thought, and the posterior incision ending up hurting much more due to them having to try and stretch my heavily scarred fascia closed over a bulkier set of hardware, 6.5 mm rods this last time. Curious Ed how big are your rods? (Now there's a really unique scoli pick-up line, right!!!!)

[titaniumed]

Curious Ed how big are your rods? (Now there's a really unique scoli pick-up line, right!!!!)

No.....It’s “Show me your x-ray!” ....Hmmm....”Nice rack!” Sharon pointed that one out years ago....ROFL (Scoliosis forum humor)

Gail, do you remember those crazy humorous x-rays I posted a while back? Radiologist’s selfie. Those were hilarious. Let me know if I need to throw those back up. LOL

6mm rods and 8mm pelvic anchors.

I wish mine was 10 minutes.....that’s faster than some draw blood. I had cancer exploration done.....and did ok, fooled em....Ha!

Funny how many revisions incorporate ALIF. Could it be the “Gold standard?” I have read up to a 95% success rate for non-union.

It sure did work like a charm on me....What do you think now? Everything good?

Ed

[LindaRacine]

Funny how many revisions incorporate ALIF. Could it be the “Gold standard?” I have read up to a 95% success rate for non-union.

No, while some surgeons do a lot of them, many don't do any at all. I think Boachie and Lenke have both stated that they never do them any more. TLIFs do essentially the same thing, but I thin that pseudarthrosis rates may be a bit higher in TLIFs. XLIFs are becoming a lot more common, though they can't be done at L5-S1. The newest technology is DLIFs and OLIFs.

--Linda

[susancook]

DLIF? OLIF? Why are they better than ALIF?