Author Topic: Skull Base Institute - another tumor bites the dust  (Read 36650 times)

chopper

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Skull Base Institute - another tumor bites the dust
« on: September 15, 2006, 08:32:34 pm »
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!
3+cm AN, hit the chopping block 5 Sep 06 at the Skull Base Institute
Was 4.5cm at it's largest point, completely removed.  All motor functions normal.  Only complaint is SSD on the left side, which was expected anyway.

Chillin (literally) at 76-32N 068-45W 77M in Kalaallit Nunaat

Derek

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Re: Skull Base Institute - another tumor bites the dust
« Reply #1 on: September 16, 2006, 04:38:07 am »
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
Residing UK. In 'watch & wait' since diagnosis in March 2002 with right side AN. Initially sized at 2.5cm and now self reduced to 1.3cm.
All symptoms have abated except impaired hearing on affected side which is not a problem for me.

Obita

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Re: Skull Base Institute - another tumor bites the dust
« Reply #2 on: September 16, 2006, 05:06:25 am »
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
Kathy - Age 54
2.5 cm translab May '04
University of Minnesota - Minneapolis
Dr. Sam Levine - Dr. Stephen Haines

Battyp

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Re: Skull Base Institute - another tumor bites the dust
« Reply #3 on: September 16, 2006, 09:06:09 pm »
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

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Re: Skull Base Institute - another tumor bites the dust
« Reply #4 on: September 16, 2006, 09:08:53 pm »
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
2cm Rt side  middle fossa  at University of Utah 9/29/04.
rt side deafness, dry eye, no taste, balance & congintive issues, headaches galore
7/9/09 diganosed with recurrent AN. Translab Jan 13 2010  Happy New Year

Laura

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Re: Skull Base Institute - another tumor bites the dust
« Reply #5 on: September 18, 2006, 06:41:53 am »
Congrats on the wonderful outcome of your surgery Chopper!

My mother in law contacted SBI shortly after I was diagnosed. Within a week we had a folder from them that also contains a DVD with additional information. They have since called several times to see if we have any questions. I’m still on a watch and wait but will consider them if/when the time arrives that I have to make a decision. If I remember correctly they are doing a new procedure (can’t remember what they call it) but it requires a very small entry point to remove the tumor. I’ll pull out the info tonight and try to post more info on it – it really does sound like something to look into!
Diagnosed August 17, 2006
AN on right side 1cm x 7mm x 7mm
30% hearing loss with no other symptoms
Watching and Waiting
http://www.patient-network.com/lparr
It's mind over "matter"... even if the "matter" is in my mind

Desilu

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Re: Skull Base Institute - another tumor bites the dust
« Reply #6 on: September 18, 2006, 01:40:47 pm »
Hi Chopper,

So glad to hear of another success story! Sounds like you are doing great. Keep walking and the balance will return. I took two long walks a day, it really helped. Ann
HEI July 26, 2005
5mm X 8mm Left AN
Middle Fossa
Dr. Brackmann & Dr. Hitselberger

Laura

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Re: Skull Base Institute - another tumor bites the dust
« Reply #7 on: September 18, 2006, 02:19:15 pm »
Instead of pulling the info out I went and found the website if anyone is interested: http://www.skullbaseinstitute.com/acoustic_neuroma.htm
Diagnosed August 17, 2006
AN on right side 1cm x 7mm x 7mm
30% hearing loss with no other symptoms
Watching and Waiting
http://www.patient-network.com/lparr
It's mind over "matter"... even if the "matter" is in my mind

staypoz

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Re: Skull Base Institute - another tumor bites the dust
« Reply #8 on: September 18, 2006, 02:39:58 pm »
Chopper:  Glad you're on the mend.  Stay the course!

staypoz

chopper

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Re: Skull Base Institute - another tumor bites the dust
« Reply #9 on: September 19, 2006, 03:20:51 pm »
So, when do you head back to Greenland?  I gotta ask, what do you do up there???

When I feel up to it or STD decides to stop paying lol.  Seriously though, it's open ended as to when I can return, totally up to me.  I'm thinking mid october probably.

Work wise, I'm a contractor for the military up there, computer nerd by trade. The big mission there is radar and space tracking. :-)
3+cm AN, hit the chopping block 5 Sep 06 at the Skull Base Institute
Was 4.5cm at it's largest point, completely removed.  All motor functions normal.  Only complaint is SSD on the left side, which was expected anyway.

Chillin (literally) at 76-32N 068-45W 77M in Kalaallit Nunaat

Obita

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Re: Skull Base Institute - another tumor bites the dust
« Reply #10 on: September 30, 2006, 06:27:20 pm »
Hi Chopper:

How are you feeling now that you are almost a month post op?  How is your recovery going?  Still planning on going back "Up North" in a few weeks?

I am anxious to hear how you are doing.  I am wondering if your recovery was much faster than normal because of the minimally invasive procedure you had done.

Kathy
Kathy - Age 54
2.5 cm translab May '04
University of Minnesota - Minneapolis
Dr. Sam Levine - Dr. Stephen Haines

chopper

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Re: Skull Base Institute - another tumor bites the dust
« Reply #11 on: October 01, 2006, 11:25:36 am »
I'm doing great overall!  Catching the plane back to work this Wednesday and looking forward to it.  Will be back to work exactly one month to the day.

Wound is still healing, looking ok.  I may not be as clean as others in regards to the scar, it's usually not pretty because I'm so pale most of the time.  Even the docs were giving me a hard time with being such a paleface.

The balance is much better than before and continues to improve, though more slowly now, but still better.  Energy level is probably about 75% normal again.  Learned to take tasks and do them in small doses.  Initially, washing one of my cars was  exhausting, but it needed to be done to get back into the swing of things.  Today, I did both of mine and was ready for more.  Night balance is still a little iffy, but still far better than before.  Paying more attention to where you walk and the incline of the terrain helps a lot.

Driving is easier and not so much of chore.  Mangaed to drive to DC for a friends bachelor party (2-2.5hr drive) and went out to the racetrack on the 29th and made a few runs, which to me, is a milestone due to the fact that it's something I take seriously, and being safe and focused is top priority.

Still need to post some pics of everything.  All in all, I couldn't have asked for a better recovery time.
« Last Edit: October 01, 2006, 06:35:48 pm by chopper »
3+cm AN, hit the chopping block 5 Sep 06 at the Skull Base Institute
Was 4.5cm at it's largest point, completely removed.  All motor functions normal.  Only complaint is SSD on the left side, which was expected anyway.

Chillin (literally) at 76-32N 068-45W 77M in Kalaallit Nunaat

Obita

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Re: Skull Base Institute - another tumor bites the dust
« Reply #12 on: October 02, 2006, 05:43:08 am »
Hi Chopper:

I am amazed at how fast you are recovering!!  Driving a race car less than a month post op????  Good for you.

Best of luck going back to work........I sure hope the way, way, way below zero temps don't bother you at all.

Kathy
Kathy - Age 54
2.5 cm translab May '04
University of Minnesota - Minneapolis
Dr. Sam Levine - Dr. Stephen Haines

red

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Re: Skull Base Institute - another tumor bites the dust
« Reply #13 on: October 03, 2006, 07:16:44 pm »
Chopper-
I am new to all this but wanted to know about your surgery?  What exactly was it called?  We are still trying to figure out what way to turn next.  I will definitely look up SBI.  Congratulations on your success. 

chopper

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Re: Skull Base Institute - another tumor bites the dust
« Reply #14 on: October 03, 2006, 10:02:25 pm »
It's essentially a fully endoscopic retrosigmoid approach.

Gross as it is, here's a before and after shot.  The lines drawn on the lower right shot are the hearing, facial nerves, etc.

« Last Edit: October 13, 2006, 10:08:33 am by chopper »
3+cm AN, hit the chopping block 5 Sep 06 at the Skull Base Institute
Was 4.5cm at it's largest point, completely removed.  All motor functions normal.  Only complaint is SSD on the left side, which was expected anyway.

Chillin (literally) at 76-32N 068-45W 77M in Kalaallit Nunaat

 


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