ANA Discussion Forum
Archive => Archives => Topic started by: chopper on September 15, 2006, 08:32:34 pm
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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.ÂÂ
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.ÂÂ
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!
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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
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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
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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!!!
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HI Chopper,
 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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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!
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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
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Instead of pulling the info out I went and found the website if anyone is interested: http://www.skullbaseinstitute.com/acoustic_neuroma.htm
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Chopper: Glad you're on the mend. Stay the course!
staypoz
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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. :-)
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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
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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.
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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
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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.
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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.
(http://img.photobucket.com/albums/v87/Discord/inside%20and%20outside%20of%20my%20head/Tumor.jpg)
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That's really gross....but interesting. Am I right, the top shots are the AN before removal?
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Thanks for the pics Chopper. Breakfast is on hold for a little while :P
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Sorry everyone...seriously. It's gross I know.
Top shots are indeed of the tumor (aka, "the chicken nugget", or just "the nugget") before they started picking away at it. The twig looking thing is the "stalk" of the tumor, I guess the main blood line or whatever.
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You know it's a wonder than can find anything when they look at that LOL
Glad to hear you are doing so well...Amazing!
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That was very interesting, and that was done with a dime size incision?
Glad to read all you have to share here, it was very informative.
Cheers,
Sue (Las Vegas)
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Dime size hole, yup. The scar is a bit bigger than I thought it would be, but nowhere near what you see on some folks on here. I'll post some pice of that too here shortly. Other than the incistion scar, there is one little patch on the back of the head where they had me in a vise or something that took a chunk out, but it's not bad at all.
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(http://img.photobucket.com/albums/v87/Discord/inside%20and%20outside%20of%20my%20head/crop.jpg)
A shot of the incision 48 hours after surgery. Way smaller than anticipated.
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Chopper:
That is incredible. My what a small incision you have!! 8 staples? I must have had 50.
How is work going? Does the cold bother your head?
Thanks for posting that picture. WOW.
Kathy
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Your scar and recovery are amazing. I am doing super well at 2 weeks to the day post-op but did have some slight facial weakness at about 9 days post-op that should resolve itself at some point. My incision makes yours look super tiny. I have the classic retrosigmoid--32 staples, but it doesn't bother me as my hair completely covers it. I have to admit it would be nicer to have a smaller cut--as I have numbeness, tingles, etc around the incision and mine goes down my neck a little more than most I have seen. Anyway, here is my question. There is always a down side. What are the downsides to your procedure? It is interesting that in all the doctors I talked to officially and unofficailly not one mentioned your procedure as an option for me despite my willingness to go anywhere. Just curious and it might be helpful to those who are still in the decision-making stage. I hope you arent' doing too much at work. You are young and strong, but you still have been through major surgery. Take care.
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Chopper:
That is incredible. My what a small incision you have!! 8 staples? I must have had 50.
How is work going? Does the cold bother your head?
Thanks for posting that picture. WOW.
Kathy
Thank you everyone for the kind words. My only hope is that it helps to inform others who are in our situation or gives them another option to explore for treatment.
Cold...not at all, so far. Then again, it's not cold yet here...15 above for today’s high is nothing to the -20 on average winter will bring.
suelay - Numbness and tingles around the incision area? Wow, that's unreal.
I did bring up the endoscopic procedure with other docs, on my own though. They never mentioned it freely; one even said it was still too experimental. In all of this, one good lesson has come out of it. It counts to explore every option and research the hell out of what your options are.
Coming out of this, it is now my belief that docs know what they know and some treat people like a business interest. They want to work on you yes, but a majority seem stuck in their ways so to speak and almost hostile to the competition at times.
Downsides to the procedure? Everything that is possible with the traditional approach can happen with this method, though the chances are far greater with the traditional method. The doc said to expect some facial weakness and a possibly dryer than normal eye for a few months. Thankfully that wasn't the case. I think the best thing overall is just that this method does not destroy or remove any of the inner workings of the ear and leaves the nerves intact vs. cutting. The damage that is done is done by your body and not compounded by the surgeon (again, potentially...not knocking ANY doc at all).
brucifer - I had to front 11k out of my pocket....ouch. The procedure is 60k. The way it was explained to me was that it was to secure a private room at the surgical/recovery center and if insurance won't cover it, you're only responsible for like 20k, to which the 11 counts to. If things work out with the insurance, you will receive a refund. Strange way to do things? Uhhhh, yeah. My insurance company at the time covered it and it counted as an in network facility. So far I haven't gotten a bill yet, just a statement for the pre-op MRI, which was fully covered.
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hi everyone,
i followed Chopper's advice and I did consider the SBI and the endoscopic neuroma surgery - it really sounds interesting and looks it is healing faster than usual because of the small incision.
So I have been in touch with HEI, LA, Hannnover, Germany and now i just called SBI (here in Bulgaria we are 11 hours ahead so it is good that whenever i call in the late evening here, the day just starts in LA.)
SBI were supportive and tried to help me which i really appreciate. Roxy, the nurse i talked to turned out to have a Bulgaria descendent (her mom is a Bulgarian) so she really sorried for me when i told her that i cannot afford the HUGE twice or even more expensive than the HEI traditional intervention - translabyrinth. SBI told me that my surgery will cost between 135,000 and 150,000 USD everything included. Plus i have to pay 750 USD to have a telephone consultation with Dr Shahinian.
Being on the path of saving money and asking all my friends for donation i would roughly get to 80,000 USD. The healthcare system here is crappy and they pay for me if i treat abroad, in case that this procedure could be performed in Bulgaria. Good but i already had two retrosigmoids and they were partial. They still claim that there are neurosurgeons that can perform he ultimate debulking and so won't pay for me. In this case i have to finance a surgery abroad by myself and i would hardly get to HEI cost of the surgery plus it's post op costs let alone SBI.
SBI sounds good but if your insurance covers it!
I just wanted to share my experience and hope this will help others in the watch and wait status!
PM me or write here and i will answer all your questions!!
All the best,
Hrissy
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hello chopper!
great to hear you are recovering so well after your surgery at SBI.
I had heard about them and looked at their website for my sister's surgery, actually, which we've spoken to the doctors at House Institute about. I'ts been a long journey and we really really need to get her tumor out soon and her case is somewhat rare because what she has is an hemangioblastoma tumor (not an actual AN) which bled, but it's in the place where AN's grow.
Can you please give me the name of your Doctor at SBI so i can try and get an opinion from him?
thanks and best of luck,
sincerely,
shamalec
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Not a problem!
The doc who did the work was Dr Hrayr Shahinian, as far as I know, he's the #1 guy, possibly the only one that does the work for the outfit. I initially sent in an email consultation request via the website and got contacted by the staff, then him when the scans were recieved and reviewed. I will warn you though, you will have to pay up front for the consult (unless that has changed since I was there...now 2 years ago).
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great! thanks for the info.
thank you for posting the photos by the way, it is really helpful to see what these scary things look like in real light! really happy for you!
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They're not connected in any way that I'm aware of. The Dr Shahinian (and actually a doc on my last follow up MRI) mentioned that the methods used by HEI were pretty brutal by todays standards and the available technology. The SBI office was located in one of the cedars medical towers in Beverly Hills I think, the facility used for surgery and recovery was Brotman medical center. Not sure if House uses the same places or not, maybe that's where the connection is?
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Hi Chopper,
I felt compelled to drop you a line after reading your story about Skull Base Institute. Our 19 year old son (Jared) was recently diagnosed with a right side AN (10x9x7 mm) on 9-17-08. After living on the internet and obtaining as much information as possible about surgical procedures I came across the Skull Base Institute. I mailed the MRI CD and other pertinent info to Dr. Shahinian and within a few days I was speaking with him about our son's problem. It was as though a huge weight had been lifted from our shoulders after the discussion I had with Dr. Shahinian. I went home to my wife and relayed all that he had told me and made the comment that "my gut feeling is that this is the doctor and procedure we want for our son". After numerous visits with our son (he is in college at the University of Kansas), he too was convinced that the minimally invasive approach was the only option for him - not the standard procedure that was detailed to him by a neurosurgeon.
Jared's surgery is scheduled for Monday, Dec. 29, 2008. We pray that his surgery is as successful as yours and that he will be back to school soon. Reading a post like yours only strengthens our belief that Dr. Shahinian's endoscopic procedure is the right choice for Jared. We will keep you posted on the outcome of the surgery if you like.
Thank you!
Ron & Karen
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Hi Ron and Karen,
I would like to hear about Jared's experience as well. I have only seen a little about endoscopic, and it always sounds interesting. I am not looking for surgery anytime soon, I hope, but I am interested in seeing whether endoscopic grows as a treatment option for ANs.
Best wishes to Jared on the 29th.
Steve
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R&K,
I can only imagine the thoughts that must have gone though once the diagnosis was initially made. Sounds like you all put a lot of thought into the procedures available too, and I'm honored to have been able to help in some way!
Please start a thead and post some updates as things progress. I do love to hear about people going there, if anything to compare experiences and get the word out as much as possible. If ya'll have any questions, please don't hesitate to PM.
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Ron & Karen,
Thank you for sharing the information about SBI and your son's condition.
My thoughts and prayers will be with you on the 29th.
I am also very interested in how things go for Jared - i am in watch and wait mode, as in my older sister, diagnosed 6 months ago.
Take care.
Sue