Author Topic: Skull Base Institute - A Successful AN Surgery  (Read 4683 times)

rkks

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Skull Base Institute - A Successful AN Surgery
« on: January 05, 2009, 09:28:02 pm »
What if I told you that you can have AN surgery on Monday and be back home on the following Saturday?  Nonsense you say, well read our experience with the Skull Base Instiute and the talented and gifted Dr. Hrayr Shahinian (Dr. S).

As some of you know, our son Jared, was diagnosed with a right sided AN (10x9x7 mm) on 9-17-08.  Jared experienced hearing loss in his right ear which led us to numerous ENT's before an MRI revealed the AN.  In our research we discovered the Skull Base Institue and Dr. S, who performs a minimally invasive surgery by the use of an endoscope.  We knew immediately that this was the surgical procedure we wanted.  Phone discussions with Dr. S only reinforced our belief about this minimally invasive technique.

Surgery was scheduled for Monday, Dec. 29, 2008.  That morning we arrived at Brotman Medical Center at 5:30 am for the customary paperwork involving insurance matters.  Jared was then prepped for surgery and was wheeled into the operating room at 7:00 am.  During the prep, Dr. S was present and answered any questions we had about the surgery.  Dr. S said it would take approx. 90 minutes to position Jared for the surgery and the first incision would be around 8:30 am.

At 8:30 we received a call on our cell phone from one member of the surgical team to tell us the surgery had started.  Every 60 minutes we would then receive another call informing us about the surgery.  One phone call was to tell us that the pathology report confirmed it was indeed an AN and it was benign.  What a relief!!  Dr. S then called at 12:40 pm to tell us the surgery was finished and at 1:00 pm he stopped by the waiting room to show us pictures of the surgery and describe in detail what had transpired.

We were able to see Jared in ICU at approx. 2:45 pm, although he was still pretty much out of it at that time.  Over the next two days Jared gained his strength and was able to walk a few steps, although he needed help in doing so.  He was experiencing moderate headaches and dizziness the first two days although they were beginning to subside.  Jared was released from the hospital after only 48 hours on Wed., Dec. 31st at noon.

We then stayed at a hotel in L.A. on Wed. and Thursday.  Each day Jared was gaining more strength and experience far less headaches.  He was able to walk farther but still needed some assistance.  On Friday, Jan. 2nd Jared had a post-op appointment with Dr. S at 9:30 am and at that time he cleared Jared to fly back home.  We then flew to Denver and arrived in the late afternoon and stayed in a hotel near the airport.  The plane ride did not affect Jared at all, in fact, Jared was showing great recovery by then and was able to look out the window and enjoy the scenery from the air.

On Saturday morning, Jan. 3rd, at 6:00 am Jared woke us up in the hotel room and told us he was starving and wanted breakfast!  This was music to our ears and after he had eaten he said he was ready to go home, which was a 5 hour drive to western Kansas.  The drive home did not affect Jared whatsoever.  He was listening to a KU basketball game and making normal conversation with us.

Since we have been home Jared has been walking on a regular basis without any assistance and has only a minor headache every so often which is relieved by Tylenol.  His recovery has been remarkable, to say the least!!  He told me that he does have to concentrate when he walks or else he staggers a little like someone who has been drinking.  Dr. S told Jared it would take 2 to 10 weeks to regain his balance. The 2nd semester of college begins on Jan. 15th and Jared has already commented that it will be 'no problem' to go to school at that time.

To those of you who question the endoscopic procedure because of a conversation with an ENT or neurosurgeon we can only ask that you please research this minimally invasive procedure.  Dr. Shahinian and the Skull Base Institute are renowned in their field of skull base tumors.  Dr. S has performed over 3,500 endoscopic surgeries to remove tumors and 600+ have been to remove acoustic neuromas.  Dr. S used to perform these surgeries the traditional (grossly invasive) way but has refined his skills to remove the tumor by the use of an endoscope.  Jared's incision is approx. 1.25 inches long and has 6 staples.  Jared's hair will completely cover the incision and it will not be noticeable.

Jared will have an MRI in the next 90 to 120 days to confirm the complete removal of the tumor.  After that, he should have an MRI annually to rule out any regrowth.  Jared had suffered approx. 60%-80% hearing loss in his right ear prior to the surgery.  He is completely deaf in his right ear at this time.  Dr. S said there is a slight chance he could regain what hearing he had before surgery after the swelling subsides in his skull, but would not guarantee it.

To think about the traditional method to remove an acoustic neuroma makes us shudder.  Jared would still be in the hospital today with a large pressure bandage on the incision to keep the abdominal fat in the cavity to prevent spinal fluid leakage.  And his recovery time would be months instead of weeks or days.  Not an option that makes much sense to us; just our opinion.

We would be honored to visit with anyone who has questions about this minimally invasive procedure and our experiences with the Skull Base Institue and Dr. Shahinian.  Please PM or email us and ask any questions you might have.

Take care.

Ron & Karen



Parents of Jared (age 19)
Right side AN (10x9x7 mm)
Diagnosed 9-17-08
Endoscopic surgery on 12-29-08
Skull Base Institute, Los Angeles
Dr. Hrayr Shahinian

fbarbera

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Re: Skull Base Institute - A Successful AN Surgery
« Reply #1 on: January 05, 2009, 11:05:15 pm »
Congratulations to you and your son -- and thank you for sharing this wonderful success story.  Please continue to keep us updated on your son's progress. 

I think the medical community can be too slow in embracing new and improved techniques.  While overall it makes sense that a new approach have a established track record of success before it is widely adopted, I think some less altruistic motives can play a part in maintaining the status quo.  I, for one, was never told of about the endoscopic approach by any of the doctors with whom I consulted, and although I did a ton of research, I somehow never came across the SBI.  I hope this institution has continued, verified success with its approach and that more patients benefit from fewer post-treatment symptoms and quicker recoveries.  That is the ultimate goal -- regardless of the technique or procedure used to get there.

Congrats again.  What a wonderful new year's gift.

Francesco
« Last Edit: January 05, 2009, 11:07:17 pm by fbarbera »

Tisha

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Re: Skull Base Institute - A Successful AN Surgery
« Reply #2 on: January 06, 2009, 09:59:20 am »
What Francesco said!  I hope that thru the years and decades, the physicians like your Dr. S. keep researching and finding other methods to make surgeries less invasive and eliminate complications.  Think of far we have come in terms of surgery and radiation in just 30-40 years!  If, for some strange bad luck, my tumor would continue to grow after radiation, I will definitely look into this.

Thanks for your story and best wishes for your son!

Tisha
1.7 x 1.0 x .9 cm (diagnosed Oct 2008)
1.8 x 1.2 x 1.1 cm  (July 2010-swelling)
1.5 x .9 x .9 cm  (Mar 2013 - 5 yr MRI)
Cyberknife at Stanford, week of 1/12/09 -  Drs. Chang and Soltys

Mickey

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Re: Skull Base Institute - A Successful AN Surgery
« Reply #3 on: January 06, 2009, 01:12:58 pm »
What type of insurances do they accept? Just wondering, Mickey

hruss

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Re: Skull Base Institute - A Successful AN Surgery
« Reply #4 on: January 07, 2009, 05:17:57 pm »
wonderful news Ron and Karen!! Really great New Year's give - congratulations on the speedy recovery of Jared too!!

I just wanted to chime in by saying that there is another member here, whose posts i got for this Skll Base Institute from. Several months ago I was making my choice too and i remember talking to this institute. The fee for me was very very high - i do not have an insurance in the US and i was supposed to pay on my own. The sum for the traditional Retrosigmoid surgery i had was very high, let alone a surgery in Skull base institute!Anyway!

I am glad that your son is doing better and better!!
Good luck to all of you!
Hrissy
4.5cm right AN pressing on the brain stem, dn Sept 2007
2 Retrosigm surgeries in Oct 2007 and Jan 2008 by the Bulgarian prof. Kyrkeselian partially removed.
3rd retro surgery in Hannover,Germany by prof Samii, Oct 2008. SSD
Got rid of my bugger, temp facial paresis
hrissysexperiences.blogspot.co

wendysig

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Re: Skull Base Institute - A Successful AN Surgery
« Reply #5 on: January 09, 2009, 10:11:25 am »


I think the medical community can be too slow in embracing new and improved techniques.  While overall it makes sense that a new approach have a established track record of success before it is widely adopted, I think some less altruistic motives can play a part in maintaining the status quo.  I, for one, was never told of about the endoscopic approach by any of the doctors with whom I consulted, and although I did a ton of research, I somehow never came across the SBI.  I hope this institution has continued, verified success with its approach and that more patients benefit from fewer post-treatment symptoms and quicker recoveries.  That is the ultimate goal -- regardless of the technique or procedure used to get there.




Ron and Karen,

Thank you for sharing Jared's experience with endoscopic surgery.  I am very happy to hear he is doing so well.  While no one mentioned endosopic surgery when I was doing my research, I was aware of it but skeptical.  I'm a little sorry I never brought it up to anyone I spoke with, but that is water under the bridge.  I had a wonderful outcome and can't really fault anyone for not bringing to my attention.  It is a comparitively new procedure and not yet widely accepted by the medical community.  It really pays to do your homework and follow through.  Should I be unfortunate enough to ever have a regrowth, this is certainly an option I would look into.  I wish Jared continued good healing.

Best wishes,
Wendy
1.3 cm at time of diagnosis -  April 9, 2008
2 cm at time of surgery
SSD right side translabyrinthine July 25, 2008
Mt. Sinai Hospital, New York, NY
Extremely grateful for the wonderful Dr. Choe & Dr. Chen
BAHA surgery 1/5/09
Doing great!

chopper

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Re: Skull Base Institute - A Successful AN Surgery
« Reply #6 on: January 09, 2009, 01:29:45 pm »
Excellent news!  Jared's experience and recovery pretty much mirrored my own with the procedure.

How I wish the endoscopic method of removal was more widely done and known about.  It probably could have saved many of the folks on here (and those that are not) from a good deal of residual side effects that come from the traditional way of business.

Either way, glad to hear everything went well.  I'm sure ya'll are very, very relieved to be done with it and moving on with life.
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.

Esperanza

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Re: Skull Base Institute - A Successful AN Surgery
« Reply #7 on: January 09, 2009, 03:52:23 pm »
Hi,
An inspiration story about Jared, I hope he continues to recover safely and speedily.
I have enquired about the endoscopic approach of AN removal to a couple of surgeons who thought it
was far to risky.
What a shame... 
Profoundly deaf suddenly on AN side with vertigo January 3rd 2008.
12mm left side AN diagnosed 20th Jan. 2008.  MRI  in July shows no growth. What do I do now?????

rkks

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Re: Skull Base Institute - A Successful AN Surgery
« Reply #8 on: January 09, 2009, 06:58:10 pm »
Esperanza,

We too received the same type of response from another ENT and surgeon.  Both insisted that the minimally invasive endoscopic technique was far too risky and we were foolish to even think about sending our son to the SBI.  And that, as you mention, is indeed a shame!

We didn't post our experience on this site to force anyone into this type of procedure.  We merely want others to know that there is an alternative to the standard technique of removing an acoustic neuroma.  This is an option that the ENT did not make known to us and it is a shame that we had to discover it by surfing the internet.

Just a quick update on Jared.  We go for walks on a daily basis about 2-3 times a day and he shows no signs of any balance problems.  Just this evening I was installing a new garage door opener and Jared came out into the garage.  Before I knew it he was up the ladder and looking into the attic to see what I was doing!  He said he experienced no dizziness or balance problems going up or down the ladder (I did strongly mention to him it probably wasn't the smartest thing to do so early after surgery). 

Our plans are to take him to college next Wednesday, Jan. 14th and he will attend the first day of the Spring semester the following day.  Quite remarkable knowing that his surgery was only 11 days ago!

Ron & Karen

Parents of Jared (age 19)
Right side AN (10x9x7 mm)
Diagnosed 9-17-08
Endoscopic surgery on 12-29-08
Skull Base Institute, Los Angeles
Dr. Hrayr Shahinian

Greg M

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Re: Skull Base Institute - A Successful AN Surgery
« Reply #9 on: January 09, 2009, 08:02:14 pm »
Thanks for sharing, I am glad Jared is doing well!! I have been just diognosed with a AN in the left ear on Tuesday:( My ENT doctor did not tell me the size but did say it was very  small and I caught it at the earliest time I could have. The only symptom I am having is slight hearing loss. I have lost the high frequency only. Other than that I feel normal, thank Great Spirit! He said I had great balence and understood vocabulary at 90%. I have not heard of this kind of aproach untill a few minutes ago and deceided to join the forum because of your post. I have been researching for days now, I read so many post here and this seems like the way to go. I feel like endoscopic procedure out ways all the other procedures. I live in Corvallis Oregon, now I need to find a way to manifest a way to pay for it, I am on state medical but in Oregon. How to do it, I'll figure it out? I wish I can find someone in Oregon that can do it this way. It just seems the best way to take care of this. I have not talked to any surgens out my AN, so I should know more when i talk to them. I don't know if this is even an option for me, because I don't know where the tumor is acually sitting. I am first going to Portland to OSHU, then I am sending my records to the House in Cali, then I want to talk to Doctor S, I almost feel releived that this option is now avalible.  I am SOOO greatful this forum is here for me. I've learned a lot in the last few days. I thank everyone here! I feel like my whole world just got flipped upside down, at age 32 I now feel 60.... anyway thanks I'm going to continue my reasearch. Greg
diagnosed 1-9-09 1.3cm LF side AN
some tinnitus, high frequency hearing loss
GK 6-17-09 @ GK center of Portland
Dr.Bader & Dr.Wayson
Time will tell......

rkks

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Re: Skull Base Institute - A Successful AN Surgery
« Reply #10 on: January 18, 2009, 09:05:05 pm »
Update on Jared:

Jared went back to college on Wednesday, Jan. 14th.  His second semester started the following day on Jan. 15th.  So far Jared is waliking to and from his daily classes with no balance problems whatsoever.  We did drive Jared to college as he is not yet driving.  He did drive one morning while he was home but admitted that it felt a little "weird" and he was not comfortable behind the wheel.  Jared cannot move his head left and right very quickly yet as this causes him some dizziness so he will wait awhile more before he attempts to drive.

As others have mentioned on this site, being SSD is taking some time to get used to.  We went shopping for some supplies the day before school started and was in a very busy and noisy store.  Jared commented that it was very loud to him and when you spoke he had some difficulity knowing where the sound was coming from.

All in all, we feel it is quite remarkable that Jared has recovered so quickly and is back in school now.  Keep in mind that it will only be three weeks on Monday, Jan. 29th since Jared had his surgery.

Take care!

Ron & Karen
Parents of Jared (age 19)
Right side AN (10x9x7 mm)
Diagnosed 9-17-08
Endoscopic surgery on 12-29-08
Skull Base Institute, Los Angeles
Dr. Hrayr Shahinian

sgerrard

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Re: Skull Base Institute - A Successful AN Surgery
« Reply #11 on: January 19, 2009, 09:39:48 am »
Hi Ron and Karen,

Thanks for the update on Jared. The left-right turning issue is familiar to many AN patients. Jared may not adjust right away, but I'm quite sure next year he will able to drvie himself to college. It just takes some time to retrain the brain. The same goes for SSD. I have met several people who are SSD, including one who did not have an AN, but some mysterious virus infection. Some choose to get hearing devices to assist with it, and some just get used to one sided hearing. There have been famous people who are SSD, including Brian Wilson of the Beach Boys (not that Jared would know who they are).

I am pleased to see continued good reports on endoscopic surgery, I hope it continues to develop as an option for AN patients.

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.