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Skull Base Institute - another tumor bites the dust

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chopper:
I just want to chime in here and say if you've got to have surgery done, please, please, please seriously consider or investigate the SBI. 

The potential side effects with the traditional surgery were daunting to me, and I don't deal well with "well, this...and this......and this could happen".  Dry eye, facial paralysis, etc, etc...no thanks.  The 5+ day ICU stay and long recover time was not a big selling point either.

A little background - early last year I was dx'd with a grade III AN after a preemployment physical (which included a hearing test) warranted further investigation.  After a ton of research, I made an appointment at Johns Hopkins for surgery.  In the time after the date was set, I continued to do further research and find an alternative treatment method, be it radiosurgery or a different approach to the traditional method.  This led me to find out about the Skull Base Institute and what they had to offer.  Upon reading up on it and watching the procedure done, my opinion was changed and the decision was made to change venues for surgery, and I'm glad I did.

I was in surgery on 5 Sept and out of the hospital 48 hours later.  The tumor had gotten a bit bigger since I last had it checked, doc said at it's largest point, it was 4.5cm (grade IV).  ALL nerves were preserved and not cut or damaged, though, I have lost the hearing on the affected side as I anticipated.  I have full range of facial motion, no dry eye and everything is normal, save the hearing loss.  Balance is off, maybe 25% worse than pre-op, and I expect this to improve back to pre-op level (not too far to go, trust me) as I rehab myself. 

My only issues are/were some pretty bad lower back spasms, attributed to an overly soft hotel bed.  Sleeping on the floor my last two nights in LA helped this dramatically and it continues to lessen day by day.  Also have a knot in my right buttcheck still and my legs are sore from the position they had me in for they 6 hours of surgery.  NO CSF leakage, NO crazy headaches, NO drooping face.  And as an added bonus, there's an option in the future for an implant or something seeing as I still have a hearing nerve to work with!  Went for a 1/2 mile walk tonight in mostly dark conditions, and it was normal, except for one or two spots were I swayed a but more than usual.

I live and work in the middle of nowhere in Greenland near the North Pole for 9 or more weeks at a time, and our limited medical facilities could never handle a problem of my magnitude if something were to crop up after surgery...and I'm 110% confident one never will (save frostbite lol).  This somewhat affected my reason for choosing this newer method of treatment, lingering problems up there are never a good thing as you have to wait a good 3 months to go on vacation and get back to stateside medical care.  In an emergency, a medivac will take 8-12 hours to reach you, and you'll have to go 6.5 to get back to the US.  Not good for any serious issue to say the least.

Again....please don't rule them out people.  Get an opinion, then a second one, and a third and keep going if needed.  Make one of the places you get hold of SBI and compare them to others, then make that gut decision and go for it!

Derek:
Hey there Chopper...

Congrats on your successful choice of surgical removal and hope that you continue with your excellent recovery.

I have carried out extensive research on every type of surgical op and radiation treatment and was most impressed with the assistance I got from Mr Rivera at SBI. If I were to go down the surgery 'route' endoscopic removal at SBI would be my first choice.

Unfortunately my medical insurance cover is not effective outside of the UK and the $86,000 costs prohibit me from undertaking a treatment option at the SBI.

I am presently on 'wait and watch' and will probably opt for GK in the UK in the event that treatment intervention becomes necessary.

Best Regards

Derek

Obita:
Hi Chopper:

I am so happy for you!!  I have been wondering how you are.  Thanks for posting the terriffic news.

So, when do you head back to Greenland?  I gotta ask, what do you do up there???

Good luck with your recovery and I hope the arse pain goes away soon.  ;D  Kathy

Battyp:
Chopper thanks for sharing..glad things went so well.  You had a large tumor removed at sbi?  WOW!  I had phoned them but didn't have a chance to find much out due to how fast I needed treatment.  Sounds like things went well....YIPPEE!!!

Patti UT:
HI Chopper,

 Ã‚  After reading your post, I feel a bit bad that I didn't persue Skull Based Institute further before I had my surgery back in Sept 2004. After diagnosis, during my research, I found them online. Contacted them, and was told they would send me a Fed X package of info with instructions who and how to send my MRI to. It never came. I contacted them 3 more times, and was promissed the packge. I was a bit put off by the nurse I kept getting as she presented their procedure as kind of a "sales pitch" which made me a bit uncomforatable. I quized my ENT about it and of ocurse when I told them about the "dime sized hole" they almost laughed me out of the office. A client of mine at the time is an anesthesiologist in Vegas, He had not heard of them either. I had him call and try to get somewhere, and his imoression was poor. So I ended up having the surgery with my Doc here who used to be at the House institute, so I felt comfortable with him.  If the nasty thing comes back I will be sure to get mor info from SKull Based Institute.  Thanks for posting the info, I'm so glad it went so well with you. Anytime you can find a less invasive procedure, it's worth looking into.
Patti UT

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