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View Full Version : XLIF Surgery--new patient



Tilly
04-19-2016, 01:11 PM
I just joined this Forum and wanted to see if anyone had experience with XLIF surgery. I have been amazed and awed at how much you all know about scoliosis and the pros and cons of various surgeries and surgeons and have learned so much about the questions to ask from what has been written here.

Was diagnosed in January with scoliosis with disc degeneration after having increasing back pain over the last 5-10 years. I knew I had mild scoliosis from the age of 16 (now 65) but had never had a back XRAY or seen what it was like--shocker.... But in comparison to many of you, mine is mild--30 degree curve (C curve) from L1-L5. My pain is also mild relative to some of what I 've read here--can sometimes walk pretty far (a couple of miles) with little pain but standing is what does me in, then, once the pain starts, anything I do is downhill. My right leg also gets totally numb. In any case it is progressing noticeably over the last few years and I find myself becoming much less active. That apparently is because of the disc degeneration and bone spurs pinching the nerves.

First back doctor was at Stanford Spine Center (I live next to Stanford) where I spent 3 years with a physiatrist with physical therapy and and pain management then last August had the spinal injection (which did absolutely nothing for me) then was referred to the back surgeon. I had my choice of Dr. Serena Hu (I noticed an earlier post about her being at UCSF), and Dr. Ivan Cheng. I chose Dr. Cheng last fall but he was on sabbatical until January--he seemed to specialize in scoliosis more than Dr. Hu.

Anyway, he told me my choices in January were to A) replace all 4 discs from L1-L5 and rods and screws to stabilize or B) do a larger surgery which would go from T11-S1. Knowing this to be a major surgery, I wanted a second opinion, which I got at UCSF with Dr. Mummaneni. He basically said the same thing as Dr. Cheng but the procedure would be different--UCSF would do 2 surgeries for the smaller sections: ALIF on a Monday and posterior for the rods and screws on Wednesday. Dr. Cheng would do the surgery in 1 day--XLIF for the disc replacement and posterior small incisions to insert the rods and screws. Stanford also does not use BMP as disc material--they think it is too risky--they use cadaver bone infused with stem cells.

Not knowing about this forum until after I saw Dr Cheng but before Dr. Mummaneni, I went back to Dr. Cheng with much better questions (thank you for educating me). I also discovered that both of these doctors I had somehow happened upon are listed in the SRS list of surgeons.

So I have decided to go ahead with surgery because the disc between L5 and S1 is starting to degenerate and if it goes too much, they will not do the smaller surgery and I am really scared of the larger surgery--if I can get another 5 years without fusing the sacrum, I will be happy. I have also decided to do the surgery at Stanford because the procedure is less invasive and Dr. Cheng has done between 200-250 of these in the last 6 years.

So my question for this group is what should I be asking now and how can I better prepare for the surgery or should I try something else? It will be scheduled sometime in mid to late June--waiting for the final date.

Thanks,

Martha

mabeckoff
04-19-2016, 03:54 PM
Welcome to the forum

There was a poster, a couple of years ago, who had surgery with Dr. Chang.

I will try to think of his name.

titaniumed
04-19-2016, 07:30 PM
Martha

Welcome to the forum!

He gave you 2 choices. The hard surgery or the easy surgery.....Is the easiest choice always the right decision?

I think you should ask him what he feels is best..... Best for the long run without a possible L5-S1 revision surgery needed down the road. (Provided you feel a tad braver when you ask.)

I believe Linda had XLIF’s on her lumbar revision, and an ALIF on her L5-S1.

Melissa, It was John....and I really wish he would chime in, its been a long time now...

Ed

mabeckoff
04-19-2016, 09:38 PM
Melissa, It was John....and I really wish he would chime in, its been a long time now...

Ed

Thanks, Ed..I could not remember his name

Melissa

Irina
04-19-2016, 11:50 PM
Hi Martha,

Dr. Serena Hu was my surgeon. She used to be in UCSF, but now she in Stanford. XLIF was part of the procedure - I had anterior, followed by XLIF and posterior. I know that during XLIF they removed one of my ribs, so now I am like Adam :-)

JDM555
04-20-2016, 02:17 AM
Hey guys. Long time no see.

I'm still around, just don't really check these forums as much. Hope everyone is doing well.

I did have surgery with Dr. Cheng back in Dec 2009. You can read thru my massive thread for more detail, but I'll try to cover most of the my experience with him.

Overall, he recommended surgery. I had a 5x* lumbar curve and I felt confident with him at the time, and said let's do it. He performed surgery on me and used stainless steel instruments. I was fused T9-L3. Within the next 1-3 days, I was reopened because something wasn't looking right in the x-rays. I was in a lot of pain after the 2nd surgery. Fast forward a year and my back wasn't healing. The bone graft wasn't fusing properly and my hardware started to loosen up in my spine. My L3 pedicle screw was actually popping in and out of my vertebrae and causing extreme pain. When I researched, I figured it was most likely failed fusion and wanted a CT scan to confirm it, but Cheng refused my request and simply told me to 'learn to live with the pain'. I was 19 or 20 at the time, so wasn't something that made me feel good.

I decided to get other opinions besides Cheng because I realized he had given up on me. I got opinions from UCSF and private practice surgeons. I ended up being correct, as the bone wasn't fusing properly and I ended up having 2 revisional surgeries. I had old hardware removed and had new titanium hardware inserted. My L3 holes were almost useless because no pedicle screw was big enough to fit anymore. Had to add bone graft around the bolts so it would fuse over time. Surgically I'm fine now, fully fused, and no more loose hardware.

I still have pain and discomfort daily, but I've learned to live with it. I still have lot of numbness in my back. And I think I'm starting to develop some kyphosis in my upper back. So I know these won't be my last surgeries.

Overall, I don't want to come off as making Cheng look as bad as possible, but as I look back, I would of chosen another surgeon and do think the first 2 surgeries did impact my quality of life and my recovery phase. He was younger and maybe he has more experience now and has the ability to perform your surgery just fine, who knows. I'm just stating my experience with him.

However, at the end of the day, I wouldn't want a surgeon that has the nerve to say 'live to learn with the pain' to a 20 year old. He gave up on me and I would hate to see it happen to others.

Good luck with whatever you decide and your surgery. If you have any questions, feel free to PM me.

susancook
04-20-2016, 09:30 PM
Welcome! You are probably in the "Adult Onset Degenerative Scoliosis " group and in general folks in our group are older, have smaller curves, and frequently in more pain. Like Irina, I had Dr. Hu and I think that she is awesome. I know that she has done LOTS of scoliosis surgeries and has an awesome reputation among adult deformity spine surgeons.

Susan

titaniumed
04-20-2016, 10:33 PM
John, Glad to see you posting and doing well!

Its unfortunate that things happened the way they did, and we wonder why things are said that make no sense. I guess it proves that surgeons are human and mistakes are made....I often wonder if younger scoliosis surgeons are afraid of doing revision surgeries, probably so, and time, experience and training should result in a much better surgeon. You would think it would be pretty hard not to improve at a place like Stanford especially with Dr Hu there as she would probably fall into the top 10 best scoli surgeons in the world.

Sorry to hear about this kyphosis issue you are mentioning....and I know you are aware of PJK and the need for the occasional sagittal x-ray for monitoring.

Enough of this seriousness!

I hope you are laying off the salami and cheese sandwiches....(smiley face) I know, its hard to exercise nutritional discipline sometimes.

My dietary habits will probably ending up killing me! (smiley face)

Ed

Tilly
05-26-2016, 06:31 PM
All,

Thanks for the responses to my first post. Apparently, I don't have the notifications set correctly so I didn't even see that anyone had responded. And then 2 days later I left town for 3 1/2 weeks. So my apologies for going "dark" and not responding.

John,
As soon as I got back, I read your story--all 54+ pages (and that took awhile!). What you went through was very unfortunate, frustrating, and should not have happened to you (or to anyone). I know that doctors often don't listen (especially to a young adult) and I can relate--my 22 year old son is still recovering from a Traumatic Brain Injury from 15 months ago being hit on his head--doctors called it a simple concussion so it was misdiagnosed for 3 months before he got relevant treatment. He had PTSD, vision problems, depression, anxiety, and doctors would not believe that anything was wrong--just a concussion that would correct itself. I finally found a neuro-psychiatrist who specialized in PTSD and did non drug therapy to retrain (rewire) the brain (including vision therapy to get the eyes working together again) I had to go to every doctors appointment with him (and still do) as his patient advocate. Still dealing with some minor issues from that but improving.

I do appreciate your honesty with what happened with Ivan Cheng--I was not overly enamored with him when I first met him--more overwhelmed with what he was telling me and I did find him a bit condescending. The second meeting with him, however, changed my opinion. I was more informed, had gotten a second opinion from a neurosurgeon at UCSF, whom he knows, and asked pointed questions on the procedure, the alternatives (Stanford does not use BMP or Allograft--they now use only cadaver bone infused with STEM cells), the timing--do I really need to do this or do I have time to wait till it gets worse, what are the risks of waiting (fusion to S1). He also spent more time with me at the second appointment and made sure I got all my questions answered. So, I have decided to stick with him and am scheduled for June 15th.

By the way, was your second surgeon Dr. Kula from Los Gatos? He did my cousin's scoli surgery 10 years ago (with mixed results) but she speaks very highly of him.

All,
What questions should I have for my pre-op visit? Was reading about the bone stimulation device and how you felt that helped your fusion.

JDM555
05-29-2016, 01:31 AM
I actually had a friend refer me to Dr. Kula because he had surgery with him and spoke highly of him. My main surgeon was Dr. Lettice though, who is Dr. Kula's partner. They both performed the 2nd set of surgeries on me. I felt comfortable with Dr. Lettice and he also spent more time with me and made me feel like we were a team trying to find a good solution for my surgery.

As far as bone stimulation device, I honestly don't know if it helped. I was fused the second time, but it was a different approach than what Cheng used the first time. So might of been the different approach or the bone stimulation or both. Who knows, I did it because I didn't want another failed fusion.

Good luck on your surgery on the 15th.