Nerve Graft

[lynnifer]

How would one go about trying to talk a surgeon into this? What kind of surgeon would be best? Plastic surgeon?

I tried emailing Cheng and never got a response back.

I tried my urologist and he wasn't interested.

I'm determined to have a nerve graft to my bladder ... it would just make my life so much better. I'm not travelling overseas. I should be able to have this done in North America. I would pay to have a surgeon do this!

Just curious.

[Buck503]

I tried emailing Cheng and never got a response back.

Do you mean Zhang?

You'd still have to go over seas for him to do it.

Maybe you could talk Julia Terzis into doing something like that.
http://www.jkterzis.com/

[cljanney]

Lynnifer,

I've had several nerve grafts (6 total), which has become the standard available repair for my type of injury (Brachial Plexus Injury with avulsions, nerves torn out of the spine from the neck area) but is by no means a cure or a normal return of previous function. I believe your best bet would be hooking up with a neurosurgeon that is progressive but highly respected with a great track record. That's kind of a hard combo to find, but they exist.

All my major surgeries were done at the Mayo Clinic in Minnesota, with the Brachial Plexus Injury team there. They are the best in the field as far as I'm concerned, and I met with the all best I could find in the US and England. My sister and I came up with a never done before surgery to innervate my triceps and convinced my neurosurgeon, after five months of begging, to give the procedure a try. Through our research of my injury and meeting so many surgeons, we simply just changed an already existing, but not very common, procedure to innervate the biceps and switched it to the triceps. No big brainer to us, but our surgeons looked at us like they had just seen a mirage.

I was riding the fence between desperation and rudeness in finally convincing them to do it. My main issue being that the muscle was de-innervated and would end up being useless if not innervated within a few more months time. The access area for the nerves had just been operated on with four other nerve grafts passing through, so the way to get at the desired nerves to graft had to be rethought.

Anyway, obstacle after obstacle presented itself, and I started to believe it wasn't going to happen. But I just kept on pushing, researching, and proving it was possible and finally, nine months post injury, I got the procedure done, a world first, which taught me that anything is possible and you're only as smart as you want to be!

The surgeon that Buck mentioned, Dr. Julia Terzis, is a highly regarded neurosurgeon in the Brachial Plexus Injury world, but I heard that she is retiring soon. I never met up with her, because she didn't take insurance, and wasn't offering the same type of procedures the Mayo Clinic team was, (muscle transfer from thigh to biceps and half of left side C7 nerve transfered to right side deltoid muscle) which provided me with a better recovery. But my understanding is, that she is progressive and a free thinker, and slightly opinionated (which can be good). I know of someone whom she worked on, and their surgeries were successful.

My guess is that with enough persistence, and as long as you prove you've done the research and thoroughly know what you are talking about and willing to risk, you could find and convince a competent trustworthy surgeon. There is a doctor out here in Los Angeles, Dr. Aaron Filler, that is a bit of a maverick an very well trained and quite inventive. He is a good option, because he incorporates newer science and research into his practice. I was going to get scar tissue and a neuroma removed, by him, to see if it would help with my neuropathic pain, but opted out, because my insurance wouldn't cover it and I was strapped for cash. Now I'm just tired of surgeries, and endless recoveries.

Here is a medical resource list of neurosurgeons that work with peripheral nerve injuries like mine. It is not a conclusive listing, for instance Dr. Filler or Dr. Terzis aren't on it (doctors have to request to be listed).

If there are any specifics or particulars you want to ask or understand, don't be shy! I can give my list of preferred surgeons if you wish.

Best of Luck!

Christopher

[lynnifer]

Do you mean Zhang?

That's right - Zhang! Sheesh, I couldn't remember the name! Thanks.

[lynnifer]

Thanks Christopher - I know we touched upon this before but I couldn't find the original post.

[manouli]

How would one go about trying to talk a surgeon into this? What kind of surgeon would be best? Plastic surgeon?

I tried emailing Cheng and never got a response back.

I tried my urologist and he wasn't interested.

I'm determined to have a nerve graft to my bladder ... it would just make my life so much better. I'm not travelling overseas. I should be able to have this done in North America. I would pay to have a surgeon do this!

Just curious.

Hi Lynnifer, maybe this will help you,


St. Marys girl to have experimental surgery in spring
By JASON BURT, Era Reporter
03/26/2007
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Life for Emily Catherine Schneider has been a struggle since before she was born.

But the St. Marys girl's family hopes a new procedure will ease that struggle.

Emily, who is now 7, was diagnosed with spina bifida while she was still in the womb of her mother, Mary Jo Schneider.

Spina bifida is a disease in which part of the baby's spinal cord protrudes from a hole in the spinal column. The constant leakage of spinal fluid through a lesion can lead to hydrocephalus, or water on the brain. A baby could also be born with clubbed feet, no bladder or bowel control and brain damage, according to information on the Vanderbilt University Web site.

Mary Jo Schneider and her husband, Tim, feeling they should spare no cost to improve Emily's quality of life, chose to seek fetal surgery for Emily instead of abortion or surgery after birth. The surgery, however, could not restore neurological functions already lost, according to the Vanderbilt University Web site.

After dealing with many doubts, Mary Jo Schneider went through with the surgery to close the lesion on her baby's lower back on Nov. 4, 1999, in the Vanderbilt University Medical Center in Tennessee.

During a routine check-up at Magee Women's Hospital in Pittsburgh, Emily was delivered by cesarean section the morning of Jan. 27, 2000. She was immediately taken to Children's Hospital in Pittsburgh where surgeons worked to close the incision made in the previous in utero surgery since it was slightly open again.

"She's an amazing child," Schneider said.

But now, Emily has to deal with bladder problems that developed from the spina bifida and depends on help from her parents and adults at school daily.

"She can't really go to a friend's house after school or sleep over," Mary Jo Schneider said. "It's nothing major. We've dealt with it."

Even an amazing child needs help, and Emily has found another amazing procedure to do just that.

An Associated Press article that appeared in The Era on Dec. 20, 2006, described doctors at William Beaumont Hospital in Royal Oak, Mich., beginning an experiment to see if rerouting patients' nerves might fix the loss of bladder control. The operation involves cutting open a spot on the spine and sewing an essentially dead nerve from the bladder to an active nerve from the thigh with a single hair-thin stitch.

The nerve, growing at a millimeter a day, will take a span of 6 to 18 months to grow back and then reactivate into a new nerve, according to Mary Jo Schneider. If the procedure works, patients can merely scratch the thigh to send a signal to the bladder.

more:

http://www.bradfordera.com/site/news...d=569780&rfi=6

[carbar]

What about BeeBee's son in this thread:
/forum/showthread.php?t=74610

did you contact her to find out how good the results were after his surgery?

[lynnifer]

No Leo - I don't want to go, nor should I have to go to, China.

The above isn't exactly what I was looking for .. but close.

I just want to be able to pee and hold it again! My gawd I only had 4 years of bladder control in my life!!! This is horseshit!

This is where my most frustration lies ... that and my feet. I'm ruled by my bladder and and the swelling in my feet which are both intertwined.

I see my urologist for the ole 'foot in stirrups' deal on Tuesday for a lookie inside my bladder where I'll mention it again. And I'm going for the throat this time ... 22yrs and no improvements in this area. Unacceptable! They can graft something, I'm sure of it. I'm not going to walk again - just let me be able to pee damn it! lol

[lynnifer]

This morning I came back from my cysto at the hospital for a look inside my bladder. Everything is great, normal ... no distention. Told them I had my headache (my signal to go) at 329ml which he thought was normal. The nurses were amazed by this ... ?

These were my exact words in front of the anesthetist, the urologist (whom I've known for years and I remember from when I worked at the hospital), and about three operating room nurses:

"I'm going to say two words and when you drive home tonight from work, you won't be able to help but think about what I said and the word possibility. NERVE GRAFT. It's doable. I have nothing to lose, but everything to gain. Gaining the ability to hold and tell when I have to go to the washroom would improve my quality of life 1000%. Reactivate the muscle around my bladder with a live nerve from above my waist (intercostal rib). There is no reason that this can't be done today. I've done everything I was supposed to do and have been waiting more than two decades. I can't wait any longer. Time for a lil payback. They're working with clinical trials doing something similar at Beaumont Hospital in the States. Let's be pioneers. You could be a pioneer in this!"

Interesting conversation to be having with about five people when you're totally vulnerable and up in stirrups ... lol.

There was a few seconds of silence. The anesthetist said, "Stem cells." I said no that they won't be working with those in any hospital for another 50 years. The urologist then sighed and said, "Well we do that with men who have lost their prostate, we give them a nerve graft."

I can tell the wheels are turning. I'm not giving up on this. I await my next appointment. I hope I'm not disappointed. I want to explore this avenue.

[BeeBee]

Best of luck, Lynn. This is the trial my son's participating in. Surgery was very easy, recovery fast. His latest appointment showed some promise. He' s experiencing some leaking when he coughs or sneezes and that's apparently a good sign. They just did the next series of trial surgeries, maybe a week ago. Most excellent!

[jb3822]

Xiao's skin-CNS-bladder transfer procedure is now being done here in the states - in New York I believe. (I'll have to dig up the web page for you). Appears to have pretty good success. Mackinnon at Wash U is also a very innovative nerve surgeon who appears to get very good results. Livshits does a variation of Xiao's procedure using intercostals. I didn't see the same numbers with his procedure, but the advantage would be volitional control as opposed to requiring skin stimulation to initiate the reflex