Author Topic: anyone used these institutions?  (Read 7302 times)

eugd

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anyone used these institutions?
« on: September 18, 2006, 11:43:27 am »
I'm 32 years old and have a 2cm A.N. with slight hearing loss and live in NYC. have 3 appointment with doctors in Cornell, mount Sinai, and NYU. Has anyone used these hospitals for treatment and or surgery, and if so what procedures did you have done and what is your complication after the procedure? I would appreciate any help to help me make my choice of action...,Thanks for the anticipated help...
Eugene- Age 32
2.15 cm mass on the right nerve removed via the retro on 12/20/06. D.C. from the House Ear Institute on 12/23/06. Dr. Freidman, & Dr. Shwartz. were the doctors. No post opt. vertigo, hearing loss  or facial nerves damage.  No major post opt headaches.

tryston

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Re: anyone used these institutions?
« Reply #1 on: September 29, 2006, 07:54:16 pm »
Hi Eugene,

I also live in NYC. I ended up getting my surgery in LA but did meet with Dr. Selsnick, otaryntology at Cornell and Dr. Gutin, nuerosurgery at Sloan Kettering. I liked them both for what it's worth.
37 yrs old
8 - 10mm AN in left IAC removed 9/12/06
Middle Fossa
Drs. Brackmann & Hitselberger, HEC

eugd

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Re: anyone used these institutions?
« Reply #2 on: October 01, 2006, 05:06:51 pm »
My wife is a neurosurgical Physician Assistant and when she discussed the AN I have with the neurosurgeon she works with, he immediately suggested the Gamma Knife.  As a matter of fact that is all he suggested.  My wife told me that that is absolutely insane especially since 1) the Gamma Kniife is archaic compared to the newer machines (Cyberknife and even newer, Novalis)-these newer machines are better for irregularly shaped tumors and they provide for a more equally dispersed dose of radiation across the entire tumor. 2) If you are young (( I am 31 )this should be your last option for several reasons: if the tumor does not shrink or the growth is not at least impeded, you will require an open procedure anyway and secondary to the scar tissue the radiation causes, you will almost definately lose at least your hearing (because scar tissue makes it more difficult to resect the tumor without damaging surrounding structures you need, like nerves) and most likely your facial nerve. Also, if you are young, the long term effects of these radiations are unknown ( if anyone tries to convince you otherwise, get out of there!).  Many doctors will try to convince you that the radiation is directed only at the tumor and will not effect any other organs like your ovaries or won't effect sperm production ( believe that if you will but everything we have read states otherwise). Nevertheless, if you chose not to have radiation its probably best.

If you are looking for the best of the best as far as acoustic neuroma surgery goes, The House Ear Insitute in California.  They take most insurance as well or they will work with you I believe if not.  My wife has been speaking to all the doctors with whom I have consulted and she says that House Ear docs sound the best.  I was actually recommended to them by a doctor in Manhattan at one of the big teaching institutes.  I have already consulted with a doctor from Cornell (I would not let him touch me if my life depended on it), a doctor from Mount Sinai-very nice but even he felt "the best" was House Ear.  As far as Dr. Rowland.  I canceled my appointment with him  because we decided to go with House Ear and he did not take my insurance.  My best friend did his anesthesia residency at NYU and worked with him.  He said he was considered the best there by his peers/colleagues.  Just a side note.  If you are going to any of these teaching institutions, you will have residents assisting on your procedures. Why is this important.  If a resident does not know how to retract on the cerebellum (how much pressure) during a rectosigmoid approach, for example, you will almost definately end up with gait disturbances (walking difficulties).  At House Ear, my wife asked about residents and there are only fellows assisting.  They are basically attendings who are going a year or two beyond their residency of choice.  If you want to keep you hearing and or have the best outcome with minimal damage, go there.  If you already have had a recurrence you may ask the Dr. to take the vestibular portion of the acoustic nerve (it has two branches) to which the tumor is wrapped around versus trying to resect or debulk the tumor as much as possible but keeping the nerve (with the intent of preserving hearing etc.).  When they "debulk' the tumor but leave the nerve, you have an increase chance of recurrence (like 3-4%).  The only way my wife said you could logically get away with debulking the tumor but leaving the nerve intact and decreasing your chance of recurrence would be to have radiation at some point to ensure the cells are rendered non-viable.  Then you ask why have an open procedure if I will be exposed to radiation anyway.  The reason is that again the danger of radiating without debulking would be dealing with a large tumor that now has to be resected in an open manor PLUS scar tissue to deal with.  At the House Ear, many or most of the doctors will take the vestibular portion of the acoustic nerve if they do a translab approach.. Most of them will tell you with this approach you will lose your hearing, however, if quality of life is your main concern (working, walking etc) then this approach is generally best because there is least retraction on the cerebellum or other brain tissues.  Food for thought as well.  If you save the acoustic nerve but damage it by nicking it by trying to resect the tumor cells as much as possible or pushing on it, this will send signals to the brain post op that there is damage to the that ear canal and there will exist constant tinnitus, background noise etc.  If the nerve is removed instead, the brain does not receive signals of damage so therefore the opposite side will compensate.  This really is a personal decision.  What may be important to me may not be as important to you.  The bottom line is trust noone 100 % except yourself and do this only once you have researched and consulted as much as possible.  Just realize that all of these doctors have one thing in mind and unfortunately in the end it is money and everyone is considered competition to them (so they will always bad mouth the other person who told x, y, and z).  They will also tell you, don't worry, the chances of that are so minimum.  Anyone who minimizes your situation is an idiot! No if and or butts.
Eugene- Age 32
2.15 cm mass on the right nerve removed via the retro on 12/20/06. D.C. from the House Ear Institute on 12/23/06. Dr. Freidman, & Dr. Shwartz. were the doctors. No post opt. vertigo, hearing loss  or facial nerves damage.  No major post opt headaches.

eugd

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Re: anyone used these institutions?
« Reply #3 on: October 03, 2006, 12:43:02 pm »
after I interviewed all of the surgeons reffered to me in NYC and contacted the skull-based institute. The only one who I felt talked to me like a person and went over diffrent situations with no strings attached was Dr. Rick Friedman at House Ear Institute.  That’s were I am getting my procedure done, probably a retro sigmoid, to try to conserve some hearing.


 One question I have to whom had the procedure, what was your rate or precentage of reassurance or regrowth the tumor? If the percentage is high then ill just have them take the nerve and decrease the chances that way? but I would like to know before I get the procedure...
Eugene- Age 32
2.15 cm mass on the right nerve removed via the retro on 12/20/06. D.C. from the House Ear Institute on 12/23/06. Dr. Freidman, & Dr. Shwartz. were the doctors. No post opt. vertigo, hearing loss  or facial nerves damage.  No major post opt headaches.

tatianne

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Re: anyone used these institutions?
« Reply #4 on: October 03, 2006, 02:08:41 pm »
well presented brucifer.

I have a neuro-ologist who studied at harvard with other neurologist just on ANs.
He told me the fact that im young (30) gives me even more of a reason to consider GK.
I was mentioning to him some headaches ive been having and he told me, you think u have headaches now ? Have surgery and u will see headaches.He told me that he felt the side effects to GK were way lower then surgery and felt having Gk would help to keep my quality of life.
He offered me many referrals to neurosurgeon, which i will take.
Hes not God, and im open to him being wrong but i also have a certain confidence in him based on his intense study on ANs.
From what ive heard on this site House is the best and im sure they will take amazing care of you.
I wish you all the best,
T
Waith and Watcher
July 2006 8mm
Jan 2007 9.5 mm
Jan 2009 1.4 cmm x 5mm
GK surgery completed on May 4, 2009 in Sherbrook Quebec, hoping and praying this will be the beginning of the end of my AN......

Chris

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Re: anyone used these institutions?
« Reply #5 on: October 03, 2006, 11:54:51 pm »
Hi Eugene,

I am drawn to information I haven't heard before so I am am curious about your comments about radiation affecting ovaries and sperm production. Not that it concerns me because I am so not maternal however could you please confirm what references you have come across regarding this. This subject was not broached before I had treatment. I would hate to think this is an issue that should have been discussed.
2.5cm AN diagnosed late 2005 and treated with fractionated stereotactic radiation in Sydney Australia Oct 2005

Mark

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Re: anyone used these institutions?
« Reply #6 on: October 04, 2006, 12:49:47 am »
Bruce and tatianne provided excellent responses to some of Eugene's  erroneous assertions regarding radiosurgery so I won't  add anything there. I do think when folks post statements such as those on either treatment option as absolute truths, then they should be prepared to provide documentation to support it. To that point, I would love to see the source studies supporting the statement

Many doctors will try to convince you that the radiation is directed only at the tumor and will not effect any other organs like your ovaries or won't effect sperm production ( believe that if you will but everything we have read states otherwise). Nevertheless, if you chose not to have radiation its probably best.

So who is we and what have they read that the rest of us missed. I'd love to see the information on that because in the almost 6 years I've scanned this board I've never seen a more absurd claim related to AN treatment. Radiation therapy for prostate or lower abdomen cancer affecting sperm or ovaries, I'll buy. Radiosurgery with 1 mm accuracy through CK / GK in a tumor in the head having a collateral impact of that type is an amazing claim to me. It might be interesting to pose that question to the docs who monitor the CK support group board. My guess is that they will either have a good laugh or not respond assuming its SPAM   ;)

Mark


CK for a 2 cm AN with Dr. Chang/ Dr. Gibbs at Stanford
November 2001

jfl

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Re: anyone used these institutions?
« Reply #7 on: November 22, 2006, 06:31:04 pm »
Hi. I live in NJ and I had a 2.6 cm AN removed 4 yrs ago- Microsurgery. I went to NY Presbyterian/Cornell. My surgeon was Dr. Philip Stieg and Dr, Samuel Selesnick. Excellent Dr's. Dr. Steig is head of neurosurgery. I recommend them to anyone. My 7th (facial nerve) and 8th cranial nerve were not where they were supposed to be and the 7th nerve was splayed out and wrapped around the tumor. THey saw it- and picked at the tumor- my nerve was not damaged b/c they saw that and took their time in removing the tumor. I did loose my hearing in my left ear but my nerves are all intact and my facial paraylsis is barely noticable now.

My suggestion is take your time and find the surgeons you feel most comfortable and do through research on the dr's. Everyone has different experiences as to post surgery.  As corny as this sounds, a strong support system is very imp. It's a major life change, and you need support. I hope this helps.

Jim Scott

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Re: anyone used these institutions?
« Reply #8 on: November 25, 2006, 06:00:56 pm »
I regret that I didn't see this thread when it was fresh (2 months ago) but after reading Eugene's comments, which were informative, I did wish to make a comment of my own.  Based on the many posts I've read, I'm willing to stipulate that the House Ear Clinic in Los Angeles is the best in the country for Acoustic Neuroma surgery.  However, I live in Connecticut and did not wish to travel cross-country for my surgery if it was not absolutely necessary.  It wasn't. 

As my signature shows, I had my 4.5 cm tumor removed at the Hospital of Saint Raphael in New Haven, Connecticut.  My neurosurgeon, Dr. Issac ('Ike') Goodrich had over 30 years experience in AN surgery and was considered the best in the state by his peers, for this type of operation.  He took a different route than some surgeons take.  On my large AN, He 'de-bulked' the tumor, using the retrosigmoid approach.  He removed a little less than half of the tumor but, using nerve monitoring, avoided disturbing any of the nerves that, if disturbed, often give AN patients a world of trouble, post-op.  As I had little nerve damage pre-op, I was hyper-aware of the potential risk for such damage.  I made certain the neurosurgeon understood my concern and would act accordingly by sparing the nerves during surgery.  He did.  I came out of my AN surgery with no real nerve damage and with only mild balance problems, which resolved themselves within a few weeks.  So far, so good. 

I should mention that, although Dr. Goodrich is a graduate of Yale medical school and although The Hospital of St. Raphael is a teaching hospital, Dr. Goodrich hand-picks his surgical team (including the scrub nurses) and does not permit hospital Residents to be part of that team.  'Only pros are allowed in my operating theater' - as he put it too me.  He is permitted that 'luxury' because Saint Raphael's competitor, the better-known Yale-New Haven hospital, would love to have him.  However, they insist that he use Residents in his surgeries - and he refuses.  I can see his point.  Dr. Goodrich is usually 'booked solid' and took my case as a favor to a colleague who had previously performed spinal surgery on my wife.   Dr. Goodrich viewed my large and growing AN as a serious health threat and, in response, basically cleared his schedule to operate ASAP.  I will always be grateful to him for that. 

The second phase of my treatment was to undergo 'fractionalized radiation'; 26 separate, daily, low-dose radiation sessions, about 15 minutes each in durantion, targeted very specifically at the remaining tumor by both my neurosurgeon and a very experienced radiation oncolgist who worked with him.  The point is to kill the remaining tumor cells and prevent re-growth yet avoid a large dose of radiation at one time, with it's potential problems.  I was informed that this 2-tier treatment has had great success in Boston and although it's too soon for me to claim total success in my case, I'm confident I'll be fine.

After my initial AN surgery and when the hospital drugs had 'worn off', I regained my balance (with some practice),within weeks, my strength came back and, six months post-op, my energy level is about the same as it ever was.  My hearing in the 'AN side' was lost pre-op so even with the Retrosigmoid surgical approach Dr. Goodrich used, I do not expect hearing to return on that side.  Otherwise, aside from occasional mild 'dry-eye' late at night, which, because I have no facial paralysis, I can work around by rapid 'forced' blinking - or just go to bed, I have few post-op complications.  My taste has returned and few folks would ever guess that I had brain surgery just 6 months ago.  Time will tell as to the ultimate success of my overall treatment but I expect complete success. 

I guess what I'm trying to point out is that there are myriad approaches to removing an Acoustic Neuroma tumor successfully, without causing the patient new problems.  My neurosurgeon used a 'new' approach that combines invasive surgery with radiation.  I like this approach.  I trust it will be successful for me.  So far, so good.  :)
« Last Edit: December 03, 2006, 05:01:20 pm by Jim Scott »
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

michael

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Re: anyone used these institutions?
« Reply #9 on: December 29, 2006, 11:38:52 am »
Great information, thanks Brucifer for dealing with, what appeared to me, to be bad information in the previous persons posting. I had an 11mm AN and was in touch with Dr. Brackman (House Clinic) and had decided to go there if I needed the surgery. I instead chose the Gamma Knife and could not be more pleased, both with results and the treatment I recieved at Wake Forest University Hospital (Bowman Gray) in North Carolina. As always, I know we are all different and all situations are different but get the real data on whatever path you choose and whoever you choose to do your procedure. You are the only person that should be making the ultimate decisions about your own treatment.
Brucifer, I to am bald (can I say bald?) and the frame left some marks for several weeks. The only time they were visible was when I was wearing band aids over them the first week. I went in for the frame to be fitted at 7:00 AM, MRI immediately afterward then had to wait my turn for the Gamma Knife. I was home (2 hours away) by 3:00 in the afternoon, went to meetings that night and flew to Colorado the next morning for several days of meetings. I was very pleased. I was 51 at the time and have 5 children (more children was never a concern for me), as before I know we all have different concerns.
Best of luck and please let us all know how you are doing.

Michael
11 MM AN - Gamma Knife 4/2004 - Wake Forest/Baptist Hospital - North Carolina, Dr. Ed Shaw

Dealy

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Re: anyone used these institutions?
« Reply #10 on: December 30, 2006, 04:15:42 pm »
I used Johns Hopkins in Baltimore that utilize the Linac for FSR. They also use GK. I asked Radiologist about comments made on  use of GK. He stated in is more accurate now then before. Now I know that is a very simple statement. However-I have stated before that ii is my opnion that any institution you use will try to sell themselves as the best for treatment. The criteria I used-was how many of they treated-how long-and are their success stories. Any institution you go too you will find failure. I just hope I am not one of those. HEI is good for surgery-hands down. Radfiation treatment is different too me because everbody is in the game now. Alot of people on this site are choosing Cyberknife- However some have had luck with GK and FSR as well. I guess if you are going to use Radiation-which kind. Hope you choose what suits you-but research well-because the obvious-once it is done that is it. Oh by the way-I hate to be the spoiler but I was told by my surgeon who took out my 1.5 CM 18 years ago-anything over at least 1.5CM-trying to save hearing is out. So I wonder what  changed. Might stand a better chance with Radiation. Ron

 


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