Facing 3rd surgery: Any info on these 2 orthos? (1 in NJ, 1 in NY)

[jerseyot]

Hi -

This is my first time posting but i've been lurking in here for many years. I am a 38 yr old mother of 2 young children (2 and 4), I am an Occupational Therapist (OTR) by trade (12+ yrs) so i know first-hand what it is like when i see a patient whose had a spinal fusion, spinal surgery or has troubles with ADLs like bathing, dressing, cooking, or just plain anything!

I have had increasing pain over the past several years and this summer, in excruciating debilitating agony, my husband took me to the ER where i was admitted for 2 days due to the pain. In 1993, i have my first (of 2) posterior spinal fusions with Harrington rods. In 1995, i had a revision where they set the rods lower (from T4-L5). My L5-S1 disc is just a sliver of a disc and at this point, according to the 3 orthopedic surgeons i've seen, surgery (and an ENORMOUS and VERY RISKY one at that) is my only option. I saw Dr. David Clements (of Cooper University Hospital in Camden, NJ) and 2 other phila area docs. A family friend recommended i see Dr. Federico Girardi (of Hospital for Special Surgery in NYC) and i'm in the process of making an appointment with him.

Here is what has been proposed to me surgically:
* anterior transabdominal incision to remove the L5-S1 disc, insert a cage with bone graft and spacer - That's the FIRST surgery (one week passes and i'm still in the hospital)
* one week later, i have the SECOND surgery - where they will remove my hardware (hooks and Harrington rods), perform osteotomies up and down my spine because as a result of my harrington rod surgeries, i now have something called FLATBACK SYNDROME, which is causing me a lot of pain
* insert fusion rods and screws from L1-S1 (basically fusing my spine to my sacrum) and then further secure the fusion by inserting "outriggers" (for lack of a better term) into either side of my pelvis.
* THEN, they would insert S2 AI bolts into my butt cheeck (one on each side just cm's from my tailbone) which would go up and into my pelvis.

I was told if one surgery, it would take 12-14 hours and is very risky for me to be under that long. If two surgeries 1 week apart, the first surgery would be 6 hours and the 2nd would be 7-8 hours - and this way would be less "taxing" on the the surgeon and patient apparently. I would be in the hospital 2 weeks (if a 2 stage surgery was performed) and then spend several weeks at an inpatient rehab hospital (funny b/c that's where i work...inpatient rehab and skilled nursing!) I was told it would be a 2 yr recover, in a brace for 3 months, and a 40% chance i might never be able to return to work doing what i love. Dr Clements told me "This is the biggest surgery we do. It doesn't get much more risky and complicated than this and you'd have to prepare yourself phsyically and mentally for what would lie ahead" - i am TERRIFIED....i've been through 2 spinal fusions before and they were AWFUL recovery-wise. A third surgery is almost too much to bear but i honestly think i need it at this point. It's hard to play with and enjoy my 2 little ones, or go out with my husband, or travel any distance to see family and friends. Im a prisoner of my own spine, although i function quite well and everyone always says, "I dont know how you get thru the day" - well, i don't either but do i have a choice?!?!?!

So, my question: DO YOU HAVE ANY EXPERIENCE WITH Dr. Clements OR WITH Dr. Girardi ???
And: IF YOU'VE HAD MY SURGERY, PLEASE SHARE YOUR EXPERIENCE WITH ME!!! Good bad and ugly - i want and NEED to hear it from someone who has gone thru what it is i am facing.

THANK YOU FOR LISTENING AND READING!!!

[JenniferG]

Hi and welcome to the forum. I hope you get some good references for those doctors from their patients, because I believe having the best possible surgeon is the most important factor in having a good outcome.

I too, was told by my surgeon that this surgery is the biggest surgery there is, so it's amazing how the vast majority of us comes through it so well. You've been reading here, so you will know that there have been some massive reconstructions done on some patients and the outcome is almost always good.

Get a good surgeon and your chances are excellent that you'll come through this safely and have a much better life to come.

My heart goes out to you though, as it does to all pre-oppies. Keep in touch and let us know how you go on your journey. Wishing you the very best of luck! Jen

[jerseyot]

Hi Jennifer and thanks so much for responding! Your surgery does sound very similar to the one i am facing.

How long were you in the hospital? Did you have one surgery or two? Did you have inpatient rehab anywhere or go straight home? How long were you out of work before you felt like you could return? I do alot of ADL's with patients and often times it involves transfers and lifting...2 doctors have told me there is a 40% chance that i won't be able to return to work as an OT. I was told i would need to donate between 6-8 pints of blood for it as i need extensive osteotomies and there is often a lot of blood loss with this; also i would need to be braced - i wore a TLSO for the last 2 surgeries. Did you have a brace? If so, what kind was it?

Thanks so much for taking the time to respond. I do appreciate it

[lisazena]

Clements

Hi,
I wanted to say that I have not had surgery, but am considering it and I spoke to a woman who had surgery with Clements and she was very happy with her results. Also, Linda Racine, the moderator also suggested him as a Philadelphia-area choice. I have not found any other Philadelphia-area choices myself and am interested if you do.

In New York, Errico, Neuwirth, Lonner and particularly Boachie Adjei are all often cited in this group.

I wish you the best.
Lisa

[mabeckoff]

I do not know if what I had done is more or less than what they want to do for you. I had a 13 hour surgery July 18 . This was my fourth surgery and now on September 9th I will be having my fifth surgery. Just make sure that you have best surgeon and everything will work out

Melissa

[Lue]

revision

Hi, I had surgery in 2002, Dr. Bolderston of 3B'S, in Pa.(a wonderful Dr.) all was well till 2009, He told me to go to Johns Hopkins to Dr. K. Kabaish, with revision that was the only place to go, and that is where he would send his sister, they do them often and well. It may seem far, but for me it was worth it, I live in Williamstown NJ, I had surgery in May and June, Posterior and Anterior, I am doing so good, and am going back to work as a hairdresser Sept 10, and I am 68. He did a lot of work a 2 extra rods, I am fused down to sacrum, with 2 small rods down both sides of spine, I could not stand upright without support, and I also needed a cane. good luck Lu

[Lue]

Hi Jerseyot, I sent you a private message, Lu

[jerseyot]

Hi Lue, i sent you a PM back! Thanks!

[Lue]

I have no message e-mail LUELEFTY@aol.com

[titaniumed]

Hi Jersey

Since we are on the topic of New Jersey, I grew up in Wayne.....and have good friends in Port Republic.

Anyway, so sorry to hear about your pain. There have been posters here that have had Harrington rods removed in revisions, but not that often. Also, Linda knows about a flatbackers forum.....maybe she will post that link. Or you could search.

I have a few bolts down low, see my x-rays. I consider them “performance” accessories....and have a Synthes bumper sticker on my car. lol
Ed

[JenniferG]

Hi Jennifer and thanks so much for responding! Your surgery does sound very similar to the one i am facing.

How long were you in the hospital? Did you have one surgery or two? Did you have inpatient rehab anywhere or go straight home? How long were you out of work before you felt like you could return? I do alot of ADL's with patients and often times it involves transfers and lifting...2 doctors have told me there is a 40% chance that i won't be able to return to work as an OT. I was told i would need to donate between 6-8 pints of blood for it as i need extensive osteotomies and there is often a lot of blood loss with this; also i would need to be braced - i wore a TLSO for the last 2 surgeries. Did you have a brace? If so, what kind was it?

Thanks so much for taking the time to respond. I do appreciate it

Sorry, I missed this somehow. My surgery wasn't a revision, it was my first surgery but to answer your questions, I only had the one surgery, which took about 8 hours. I didn't have rehab, the physiotherapist came twice to help me walk in the first few days but that was it. I was in for 19 days, but should really have gone home about day 9 but my pain suddenly went off the planet and I was requiring morphine injections into my stomach to get it under control and they wouldn't let me go until I no longer needed them. After I got home, the pain stopped, so I think it might have been psychological! I didn't need to donate blood, I was given 6 units of donated blood. The surgeon used donated bone and BMP mixed with my own bone taken from the "otomies." I didn't have a brace either. At 2.5 years post op, I feel I could lift heavy loads quite easily however my surgeon said, no heavy lifting to save the vertebra above my fusion and no running. The unfused vertebra above T4 were his only concern. I was discharged at 12 months.

[ADMoul]

A close friend had a fusion done here in our local area that was a disaster. She was in pain for months afterwards (non-fusion, hardware issues, etc.) Dr. Kebaish at Johns Hopkins did it all over again and she's doing extremely well. This all happened when she was 60 and she has made a complete recovery. Best of luck to you!