ANA Discussion Forum
Archive => Archives => Topic started by: lalldipesh on May 17, 2006, 11:57:02 pm
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They (SBI) have a minimally invasive option but I am not sure if this is a good way to go. I am dealing with California Ear Institute (Dr. Stidham and Dr. Roberson). I have met Dr. Stidham and she is quite impressive. I will be meeting Dr. Roberson in two weeks. I need to do what is best for me and I wanted to do my research before I take the fork in the road. I will not do SBI if it is not the best option as I am inclined to do Translabrynthine surgery to get rid of the AN even at the risk of SSD.
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Check out this thread....
http://anausa.org/forum/index.php?topic=729.0
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I just found this...thought I'd share (http://www.anarchive.org/approaches.htm)
same as what is below....just wanted to include the source...
Endoscopic approach
For completeness, we mention the possibility of the endoscopic approach to AN surgery. This is a minimally invasive technique, creating a dime-sized incision behind the ear. A miniature fiberoptic videocamera is snaked in through the holem so the tumor site can be viewed on a screen.
The consensus among neurosurgeons is that this approach is too risky:
I asked four doctors about that and they all said it is VERY, VERY risky!! If the surgeon inadvertently cut a blood vessel, you could bleed to death before they could get your skull open to fix it.
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Thanks for the info batty, I have read that on the archive before. However the doctors that were asked I assume have been trained in the conventional approaches, and it does say if a blood vessel is cut, I'm sure there are if's that could apply to conventional approaches as well. I have yet to hear of adverse cases from SBI, only success stories and heresay regarding the dangers. It would be unfortunate if this minimally invasive technique is not being utilized simply because so many surgeons are trained a certain way and due to competition spread misinformation about it like they do with radiosurgery. I just emailed SBI and asked them to comment on the risks, if they respond I'll post it here, to hear their side of the story. Maybe they have a procedure in place to repair any possible cut of a vessel.....I guess we'll see.
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I asked all of the doctors I met with about this endoscopic procedure. All of them said they could do it, they do it on cadavers all the time. But they said that if a blood vessel was nicked the person would bleed out before they could crack the skull and that it simply wasn't worth the risk.
Two of them also recommended that if I were going to pursue this route to look towards South Korea as they have done more work in this area than anyone and are the most advanced at it.
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Very interesting topic, I was curious about this approach before I ruled out surgery. I don't know anyone that has gone this route so I have never heard any feedback/results re:SBI. Would be very interested to see a response from SBI if you get one (Jamie).
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I talked to sbi on the phone but by the time they called me back my decision was made and didn't pursue it. I also couldn't stomach the thought of getting on a plane again and going anywhere after my flight right after diagnosis.
Def. and interesting topic!
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I emailed them yesterday with my questions and I got an email back saying a clinical staff member would be in touch with me, so we'll see what they say. One of my questions was whether they have a procedure in place in the event of a vessel being cut. In regards to the wanderer's comments on S Korea, there is a S Korean doctor in PA, Dr. Jho, who performs this procedure as well. It just seems with this approach there is almost no neurological damage at all, and most of the patient stories I read have them discharged in about 48 hours. I'm just curious to hear what they say about the possible risk of bleeding to death....
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On page 12 of the Post-Treatment section of this site, a poster named Zach gives a pretty comprehensive story and positive feedback on the SBI. I'm very interested in this procedure too having jsut been diagnosed.There is another poster here whose husband had a neuro surgery performed by Dr. Shanhian with really postive comments. I can't actually find any first-person negative accounts, but have found several first-person rave reviews.
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Well, they just gave me a call back to answer my questions, first I asked if they operate on previously irradiated tumors (just in case ;) ), and they do. Second I asked about the bleeding to death issue and he said they've never had a fatality, so in the unlikely event I ever need surgery, that's where I'm going for sure. There are ALOT of "what if's" when it comes to any surgery, but the negative things floating around about SBI seem to be another case of conflicting interests....
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If it were me, I'd want to check on the background training of the surgeons. It would concern me that the surgeons are not graduates of a neurosurgery residency program. Some went through a surgical program, and a plastic surgery program, but not a full length neurosurgical residency. Neurosurgical resident program typically last 6 years after obtaining a medical degree, and provide the in-depth training and hands on experience to learn their specialized craft. I can't imagine submitting to neurosurgery by anyone other than a highly trained neurosurgen.
It would also concern me that the first person reports from patients hit on every fear that an AN patient might have. If someone were to design a patient report, it might sound very much like like these reports. Note that the reports on this forum about this program have a totally different tone than other patient reports.
Hopefully this program is effective. The skull base surgical teams at tertiary teaching hopitals have surgeon with extensive backgounds in Neurosurgery. Since this program doesn't seem to be staffed the same way, I'd want to check out the staff and the procedure with the same care that we use to check out skull base surgery teams.
Rob
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Here's a link to the team's info....
http://www.skullbaseinstitute.com/about/team.html
Rob, do you believe the patient reports to be fabricated?
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Hey everyone-
I just wanted to post and assure you all that I am in no way affiated with Skull Base Institute or Dr Shahinian. I even have the bank statements to prove that I am still paying them. :) Please feel free to contact me with any question or concerns. My husband and I have been there.... and we know it is scary as hell! We thought the same things that I have seen many of you all post: "Is this too god to be true" & " are they all connected." All that I ask of you... please email or contact us. We will be more than glad to share our experiences with you.
Sincerely,
Eron & Drew
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ok guys... if you all want a day-by-day account here it is. While my husband and I were going through this major decision & surgery, I kept a journal. Since we live in GA and our family is spread across the southeast, we decided to update this website daily to keep eveyone updated. I have just made the decision (and been emotionally able) to share this with all of you. Feel free to read our journals and follow us as we walk through our decisions and surgery.
www.thestatus.com
click on "visit patient page"
last name: rabun
password: 1horse
I hope this helps to shed some light and help you through this very difficult time. God Bless.
Eron & Drew
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I too checked into the Skull based Institute. I think I made a mistake by not going there. I guess traveling out of state was just a little scary. I wish I would have flown to meet the team of Doctors before making the decision to go elsewhere. I was told that my facail nerve tested 100% yet 10 months after surgery it still has not come back. My eye still does not blink all the way. I have had the best attitude about this surgery but am now starting to get upset that I didn't do more research. I am in sales and ask them to leave part of the tumor in if taking it all out would make my face messed up, they took it all out and now have no answer as to why this happened.
My balance has gotten much better. I think doing weights would be very benificial. I spoke with a women who worked out with weights before her surgery and did not have much issue with balance.
I think I would go to California to the Skull based institute if I were doing this all over.
Another thing that is very important to mention is leave the cigerettes and any alcohol alone. It will delay recovery big time. Don't let them tell you it won't.
I never thought that this would be so long of a journey, but we can all be thankful. It could have been alot worse.