Author Topic: Skull Base Institute  (Read 17092 times)

suzfarm

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Skull Base Institute
« on: June 28, 2006, 10:59:26 am »
Background:  I am a 46 year old who has had a diagnosed acoustic neuroma since 2001.  It has shown consistent growth over the last couple of years and I am looking to find as much information as possible as to how to proceed.

I am familiar with conventional surgical procedures and the potential for side effects, such as: partial facial paralysis, recurring headaches, CSF leakage, hydrocephalus and the long recovery period.  I am also aware, but less familiar with, the available radiation treatments for an acoustic neuroma.

I have been in touch with the Skull Based Institute in Los Angeles.  According to their literature, the lead doctor there has pioneered a minimally invasive procedure that reduces the risks and side effects of surgery and shortens the recovery period substantially.  I have been unable to find any other surgeons, hospitals or clinics that are familiar with or trained in his techniques.

I have questions, but would prefer that responders use these questions as a framework to provide me with any information they think I should have, prior to making a decision.

1.   Are the methods used by the Skull Based Institute known by surgical peers in the profession?

2.   Are the results known, and subject to any peer-review or commentary?

3.   Are there others pursuing similar techniques?  If so, who and where?

4.   If not, why not?  (It would seem if the technique is successful with less patient debilitation, others treating acoustic neuroma would be interested in learning of these practices and in communication with the source of the technique and tools.)

tony

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Re: Skull Base Institute
« Reply #1 on: June 28, 2006, 01:19:20 pm »
Radiation is an option depending on the size/location of the tumour
and yes many Hospitals offer the service in twp or three
formats.
I suggest you have a look at the AN patient archive - there are sure to be some
suggestions there
Best regards
Tony

jamie

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Re: Skull Base Institute
« Reply #2 on: June 28, 2006, 02:11:36 pm »
I had CyberKnife treatment, but was also interested in the endoscopic procedure at SBI, if for some small chance the CK didn't work, I would explore that option further....

1.   Are the methods used by the Skull Based Institute known by surgical peers in the profession?

It's endoscopic, many surgeries are done using that method although I believe it is new for skull base surgery in the US, I hear it is more common in S Korea.

2.   Are the results known, and subject to any peer-review or commentary?

I'd check with them about that....

3.   Are there others pursuing similar techniques?  If so, who and where?

Yes, Dr. Jho on the east coast..... http://drjho.com

4.   If not, why not?  (It would seem if the technique is successful with less patient debilitation, others treating acoustic neuroma would be interested in learning of these practices and in communication with the source of the technique and tools.)

Surgeons would require more, probably extensive training in the new procedure, financially they may not see the benefit, and hospitals stand to lose money in the fact that patients are discharged much quicker....I know many disagree with my jaded views that money is basis for such decisions and that's okay. :)

Other surgeons also say it is too dangerous because they may accidentally cut a vessel and not be able to repair it quick enough, although when I spoke with SBI about that they said that was incorrect and they've NEVER had a fatality....it's the least invasive treatment next to radiation and I think it's worth considering for sure, all patients I've heard from who had that procedure seemed very happy.
CyberKnife radiosurgery at Barrow Neurological Institute; 2.3 cm lower cranial nerve schwannoma

russ

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Re: Skull Base Institute
« Reply #3 on: June 28, 2006, 03:17:32 pm »
 Hello;

  To my knowledge there is only one other facility, and it's in CA as well, which performs the experimental minimally invasive procedure. Seems somewhat over 1000 have been performed is all.
  Of course they would report glowing successes and some they have had, but those are not even a fraction of the number of successes for traditional surgical methods or irradiation types combined.
  Posted on the old ANA online email support group was that Skull Base and procedure as 'pioneered' by Dr. Shaninian was visited by House Ear Institute and rejected as potentially dangerous because of the limited field of vision provided by the endoscope. Also, if an artery were nicked, the endoscopic view would be blurred and there may not be ample time to open the pt. to repair the bleeding.
  Dr Shahinian was not a neurosurgeon upon the program's conception and actually sued a licensed neurosurgeon to become Dept. Head.
  Personally; I don't care for Shaninian's shinanigans or the method, which for many, requires the same amount of recovery time as for tried and tested surgical procedures.
  Notice: The procedure has not caught on?
  Best wishes for your best choice. If you're going to CA or are there and want surgery, you may as well go to HEI with a reputation of many years.
  San Diego Gamma Knife center is good for GK surgery.
  It has been said by the GK specialist I see that the other irradiation types as CK, FSR, ST, Proton Beam, etc. are not better but designed to capture a market share. I had thought so before asking. Some might argue the point.

  Russ

nannettesea

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Re: Skull Base Institute
« Reply #4 on: June 28, 2006, 04:17:40 pm »
In general mainstream surgeons are not positive about this place.  Shahinian claims they are "jealous."  I've heard some good testimonials from his patients, but he supposedly had 2 fatalities and was kicked off as head neuro-surgeon at Cedars.  If he is a great doc and cares about people as much as money, why hasn't he spearheaded the technology/research, i.e. shared with other professionals?  That is an answer I don't know.

All the research on this technique stem from him...and I was told only one other person in the world, in Italy, performs the technique.

I was scared off, but maybe should have given him more consideration.  If you have a "difficult/large" tumor, don't know if I would choose him.

My opinion.
Nan

1.7cm x 1.4cm x .8cm, right ear
Trans-lab approach
Dr. Jay Rubinstein, U of WA
8/29/05

jamie

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Re: Skull Base Institute
« Reply #5 on: June 28, 2006, 04:48:08 pm »
There are others, SBI is not the only facility that performs that procedure....here's the link to Dr. Jho's site again....

 http://drjho.com



CyberKnife radiosurgery at Barrow Neurological Institute; 2.3 cm lower cranial nerve schwannoma

russ

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Re: Skull Base Institute
« Reply #6 on: June 28, 2006, 06:40:58 pm »
Hi
  Seems if there's money to be made and pts. who will come, Drs will try what the FDA approves and insurance cos. and medicare will pay for. I do wonder if all ins. cos. will pay for this Tx? There are a whopping total of 3 facilities now out of how many which will perform tried and trued methods of Tx?
  Russ

Mark

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Re: Skull Base Institute
« Reply #7 on: June 28, 2006, 10:01:16 pm »
I think most of us tend to have a belief that the healthcare system is all about patient care and money is not a factor.It is important to understand that money issues drive many aspects of medical care. Whether it involves the minimally invasive SBI process, radiosurgery machines or surgery shops like HEI. AN patients are generally among the healthiest of brain tumor patients as typically most others are dealing with malignancy's and all the associated complications that go with that. AN patients generally have the shortest in hospital stays of anyone having a crainiotomy but the insurance reimbursement is the same, hence it is a very profitable surgery for a hospital. As a result, HEI is very much a cash cow for an otherwise non descript community hospital in LA called St Vincent's. If SBI really works then it reduces the stay further without affecting reimbursement, so it becomes even more profitable than open surgery for the facilities that perform it. Radiosurgery involves nothing in the way or OR time, staff or supplies, but does involve large capital equipment purchases that need to be recouped. While one would hope that all physcians would not be influenced by the finances associated with their treatment option, it would be ignorant to not recognize that aspect in my opinion. It is is obviously less of a factor with docs who use multiple treatment options as opposed to those who are dependent on one. It is also probably more of an issue in community hopsitals than University medical centers based on the generally higher alternative funding options of the latter. Those are both generaliaztions , not absolutes. Point of all this is that evaluation of all treatment options is a responsibility of the patient to explore all options with someone who practices it and make their own determination. Money is a factor in all of them so it would be silly to suggest it minimizes the efficacy of any one option.

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

tony

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Re: Skull Base Institute
« Reply #8 on: June 29, 2006, 12:27:23 am »
Sad but true - incredibly we have the same issues here
with budgets overflowing april-june, then the cupboard is empty
jan-march - if you go sick at the wrong time (just dont- OK)
the docs start making all kinds of choices based on
"if" further OPs maybe required, or how long in hosp,
NOT whats best for you.
Strange, when they took 40% of my income
over the last 10yrs - I dont recall any handbacks
- because the service was reduced that month
- and we now pay 7 bucks a gallon for petrol....
makes you want to weep !
Best regards
Tony

Pablo

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Re: Skull Base Institute
« Reply #9 on: June 29, 2006, 10:20:53 am »
Does anyone have any solid data including  information about outcome of these endoscopy procedures, such as hearing preservation rates (Is hearing preserved at same level as before treatment?), preservation of facial nerves, any side effects, efficiency as measured in terms of  how many tumors re-growths, etc?
2.5 cm x 3.0 cm  right side
FSR  7/2006
Cabrini Medical Center, NYC

Raydean

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Re: Skull Base Institute
« Reply #10 on: June 29, 2006, 03:48:32 pm »
I thought I'd share the following information.  A Japanese paper (abstract below) has just been published which says that the technique is gaining “widespread acceptanceâ€? and find it to be safe in expert hands.

This wouldn't be my first choice for treatment, but thought other would find it interesting.  Facial and hearing stats are mentioned in this study that Pablo has inquired about.  I believe that it would be to soon of timeframe for regrowth issues for this particular study.
RB

Endoscope-controlled removal of intrameatal vestibular schwannomas.

 

Minim Invasive Neurosurg. 2006 Feb;49(1):25-9.

Hori T, Okada Y, Maruyama T, Chernov M, Attia W.

Department of Neurosurgery, Neurological Institute, Tokyo Women's Medical University, Tokyo, Japan.

thori@nij.twmu.ac.jp

 

The use of endoscopes for surgery of the cerebellopontine angle tumors is steadily obtaining widespread acceptance. The objective of the present study was a laboratory and clinical evaluation of the safety of the endoscope-controlled microneurosurgical removal of the intrameatal vestibular schwannomas through a retrosigmoid approach. The anatomical investigation was done on formalin-fixed cadaver heads and dry temporal bones. Clinical series included 33 consecutive patients (23 women and 10 men; mean age 50 +/- 15 years).

 

A bayonet-style rigid endoscope with 70 degrees angle of view and 4 mm outer diameter was found to be optimal for observation of the internal auditory canal. Its insertion in the cerebellopontine cistern should be preferably done under control through an operating microscope. Endoscope-controlled manipulations necessitate the use of a special holder system, which provides a stable position of the device and allows bimanual manipulations by the surgeon. A thermographic evaluation did not reveal a significant increase of the local temperature due to use of the endoscope.

 

Use of the endoscope permitted removal of the neoplasm from the most lateral part of the internal auditory canal and identification of the nerve of tumor origin. In total, 28 tumors underwent total removal, and anatomical preservation of the facial nerve was attained in 31 cases. Damage of the facial nerve by the endoscope was met once. In 8 out of 16 patients, who showed serviceable hearing before surgery, this was preserved after tumor removal.

 

In conclusion, endoscope-controlled removal of the intrameatal vestibular schwannomas seems to be a technically feasible, effective and safe procedure. Nevertheless, good equipment and special training are absolutely necessary for attainment of optimal results.

 

PMID: 16547878 [PubMed - indexed for MEDLINE]

 

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Battyp

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Re: Skull Base Institute
« Reply #11 on: June 30, 2006, 05:43:34 pm »
er um, how can they tell if hearing was maintained or facial nerve damage was done on a cadaver?  Seems kind of a strange statement to make.

Suz,  if you do a search on here on sbi you'll find some more info.  There was a patient who went that path and was very happy with the results if my memory serves me correctly.

The possible bleed out scared me away as I had a larger tumor.  If I had a smaller one I would have looked at it a little more than I did but still do not know if I would have gone that route.  What it your tumor is sticky and is more difficult to remove do they have enough visibility?  Things that make you go hmmmm......

Pablo

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Re: Skull Base Institute
« Reply #12 on: July 01, 2006, 05:40:46 am »
What it your tumor is sticky and is more difficult to remove do they have enough visibility?  Things that make you go hmmmm......

Hmm, that would bring up a new question: Is it something valid to think of after failed radiation? I understand that these tumors change in texture after the treatment.
2.5 cm x 3.0 cm  right side
FSR  7/2006
Cabrini Medical Center, NYC

jamie

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Re: Skull Base Institute
« Reply #13 on: July 01, 2006, 11:59:17 am »
Hmm, that would bring up a new question: Is it something valid to think of after failed radiation? I understand that these tumors change in texture after the treatment.

It is widely disputed whether or not they change texture after radiation, surgeons that perform both treatments tend to say they don't. At any rate it is not the case with every patient, sometimes they have even been said to be easier to remove. I asked SBI about removing irradiated tumors and they said yes, in the unlikely event of radiosurgery failure, I am pretty sure that is the route I would go. Although I would likely go to Dr. Jho who comes from South Korea where they have more experience with the procedure, and seems to have a more impressive neurosurgical background....

Quote
Dr. Hae-Dong Jho is professor of Neurosurgery and director of the Jho Institute for Minimally Invasive Neurosurgery in the Department of Neurological Surgery.  He had been assistant professor, associate professor and professor of Neurosurgery at the University of Pittsburgh from July 1989 till 2001.  He moved his practice to Allegheny General Hospital in Pittsburgh, Pennsylvania and has been appointed as professor of Neurosurgery at the  Drexel University School of Medicine Allegheny General Hospital since 2002.

Dr. Jho has published more than 110 papers in refereed journals, 150 abstracts, and 20 book chapters.  Dr. Jho's publications can be reviewed through the National Library of Medicine's publication database.  His current main interest is in Minimally Invasive Endoscopic Brain and Spine Surgery developing new and innovative surgical techniques for better patient outcome, lesser risk, and faster recovery with cost effectiveness compared to conventional neurosurgical techniques.  A few of those new techniques are endoscopic endonasal pituitary and skull base surgery (skull base surgery via a nostril without a skin incision), various simplified transcranial skull base surgeries ("Band-Aid" skull base surgery), minimally invasive endoscopic cranial brain surgery, and minimally invasive endoscopic spinal surgery for various spinal disorders. Those techniques also have been applied to patient care for many years.

http://drjho.com/jho_institute.htm

CyberKnife radiosurgery at Barrow Neurological Institute; 2.3 cm lower cranial nerve schwannoma

Pablo

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Re: Skull Base Institute
« Reply #14 on: July 01, 2006, 12:18:55 pm »
Thanks a lot Jamie for addressing my question and for the excellent link. I'm set for an FSR in two weeks but this surely encourages me even with the unlikely possibility of radiation failure, as long as I don't have to go back thinking about surgery.
2.5 cm x 3.0 cm  right side
FSR  7/2006
Cabrini Medical Center, NYC

 


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