Author Topic: 9-year study from SBI  (Read 13483 times)

jerseyboy

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Re: 9-year study from SBI
« Reply #15 on: October 21, 2010, 06:48:15 am »
Hey jerseygirl,
Thanks for the keyhole info.  This might be very interesting; let's keep up the research.  When is opur next reunion?  I miss you!
jerseyboy
Watch and wait since May 2009.

jerseyboy

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Re: 9-year study from SBI
« Reply #16 on: October 24, 2010, 06:28:57 pm »
TW and Eve,
Your dialogue here about radiation versus surgery, including the kehole procedure, is hugely informative.  But, what are your views if someone statistically should be treated with radiation (older with a small AN), however, he is highly symptomatic, with dizziness, a wonky head, etc.  Does that change the calculation?  I understand radiation caps symptoms at current levels but doesn't reduce them.  So, you're stuck with the symptoms you have, no better, no worse.  If surgery could actually reduce the symptoms, and that was the primary goal, regardless of possible hearing loss, even some facial paralysis, would that change the treatment determination?  Thanks.
Jeff
Watch and wait since May 2009.

jerseygirl

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Re: 9-year study from SBI
« Reply #17 on: October 24, 2010, 08:27:20 pm »
Jeff,

Sorry I somehow missed your previous post. We did not plan any get together luncheon for fall so far. I guess everybody is really busy! The weather has been really nice after this awfully hot summer, may be that's the reason?

From my conversations with neurosurgeons and neurooncologists, any symptomatic AN, no matter how small, is treated with surgery. This is because radiation can cause an increase of current symptoms, at least temporarily. A lot really depends on you. Can you live with  temporary (weeks to months) increase in symptoms or will they make you bedridden and miserable?  Or, perhaps, that will make you run to the nearest neurosurgeon's office to get rid of the offender for good at any cost. If the chances are good that you will have surgery at a future date anyway, then why not have it right away and forget about radiation and any hopes that it might miraculously make things better.

This is what I understand but I ,think, it would be best to post this question in the Radiosurgery section (they might not find it here). They might have a different opinion, supported by research and case studies. After all, I spoke to a lot more surgeons than radiation specialists, so my knowledge might reflect that.

Good luck with your search.

             Eve   
Right side AN (6x3x3 cm) removed in 1988 by Drs. Benjamin & Cohen at NYU (16 hrs); nerves involved III - XII.
Regrowth at the brainstem 2.5 cm removed by Dr.Shahinian in 4 hrs at SBI (hopefully, this time forever); nerves involved IV - X with VIII missing. No facial or swallowing issues.

Tumbleweed

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Re: 9-year study from SBI
« Reply #18 on: October 28, 2010, 11:02:41 pm »
...what are your views if someone statistically should be treated with radiation (older with a small AN), however, he is highly symptomatic, with dizziness, a wonky head, etc.  Does that change the calculation?  I understand radiation caps symptoms at current levels but doesn't reduce them.  So, you're stuck with the symptoms you have, no better, no worse.  If surgery could actually reduce the symptoms, and that was the primary goal, regardless of possible hearing loss, even some facial paralysis, would that change the treatment determination?  Thanks.
Jeff

Jeff, the "statistics" you refer to are antiquated. It was (and still is, by some people) feared that radiation could cause malignancy several decades after treatment. Hence, the preference used to be that only older people should take that risk, as they would be dead from natural causes long before malignancy could develop in later years. However, this viewpoint was based on the use of much higher doses of radiation, applied with far less accuracy, than is the case today. In fact, statistics show that the chance of getting a malignant tumor as a result of having radiosurgery (one treatment) or radiotherapy (two or more treatments, in smaller doses) is virtually no greater than the risk to the general population (i.e., it's a statistically insignificant difference, amounting to a fraction of a percent).

Radiation is a viable option for more than just small tumors, too. In most cases, an AN up to 3 cm in size (ANs are typically categorized as a medium-size tumor below that size) can be safely treated with radiation.

There is no guarantee that radiation will "cap symptoms at current levels," as you put it, but that is almost always the case in the long term. Around 25% of CK patients actually notice gratifying improvement in their balance, as I did beginning roughly six months after I was treated. Many radiation patients suffer through an increase in the severity of their symptoms for up to a year or so after treatment, but the increase is almost always transient (resolving over time, returning to the "level" they were at immediately before treatment). With CK at least, you are only likely to have an increase in the intensity of symptoms you already had right before getting treated. For example, if you haven't had vertigo lately, CK is not likely to cause vertigo for you -- even if you had vertigo years ago when the tumor first started becoming symptomatic. In exceedingly rare cases, a patient who has received radiation will see an increase in symptoms that persists; no type of treatment is without risk.

To my knowledge, no surgeon will promise you that surgical resection will abate your symptoms. Just because a tumor that has been removed is no longer putting pressure on cranial nerves it was previously impacting, that doesn't mean that the damage it has already caused will be reversed. But around 20-25% of CK patients who were treated at Stanford also see "gratifying shrinkage" of their tumor over a 5-year period after treatments. In my case, my AN swelled 33% in volume after treatment but then shrank 59% during months 5-11 post-treatment -- a very unusually high rate of shrinkage. This probably explains why my balance has improved so remarkably following CK (and I also regained a little bit of hearing in my bass frequencies, although I lost a little in my midrange at the same time). The bottom line is that you should not expect your current symptoms to abate as a result of any type of treatment, including surgery. If it happens that you are one of the lucky ones who do see symptoms improve, count that as icing on the cake (the cake itself is tumor control).

From your last comment, I assume you meant "balance problems" when you referred to "symptoms" that might possibly improve, notwithstanding possible hearing loss and facial paralysis due to surgery (your inference). Even if one could predict such a tradeoff was likely (again, you can't), the value of trading one symptom for another (a complication from treatment) would be a very personal choice that one cannot possibly cast in broad terms for everyone. For example, a professional musician might value their hearing over their balance, whereas a gymnast might place higher value on retaining their balance. Personal preferences aside, Dr. Chang (esteemed neurosurgeon and CK practitioner at Stanford University Medical Center) generally places the goals of treatment in the following order of importance:
1. Control the tumor's growth (it should be noted that recurrence can happen with either surgical resection or radiation, but it is rare -- roughly 2% chance, when treated by the best doctors of either discipllne).
2. Preserve facial-nerve function
3. Preserve balance
4. Preserve hearing

I hope this info helps.

Best wishes to all,
TW
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

jerseyboy

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Re: 9-year study from SBI
« Reply #19 on: October 29, 2010, 02:17:02 pm »
Thank you both, Eve and TW,
Your observations are filled with much wisdom and concern for others.  I honestly get tears in my eyes reading your posts, as you both are so genuinely trying to be helpful.  My big issue is that I frequently have a wonkly head.  It feels like a fullness, exacerbated by fast walking, when it feels like my head will explode.  (Oddly I can work out on my elliptical machine with no problem.)  When I'm not walking somewhat quickly it's very mild, barely noticeable.  As I think about treatment, I guess TW's comment summarizes well:
"The bottom line is that you should not expect your current symptoms to abate as a result of any type of treatment, including surgery."
I will wait for my annual MRI in December.  Given my age of 64, and tumor size (a year ago) of 0.4mm, I am leaning toward CK.  Thank you both so much, again.
Jeff
Watch and wait since May 2009.

Tumbleweed

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Re: 9-year study from SBI
« Reply #20 on: October 29, 2010, 10:59:15 pm »
Hi, Jeff:

I'm glad if I've helped in some way. Btw, I used to have horrible imbalance and oscillopsia when walking. (Oscillopsia can be described as bouncing vision, kinda like what you see in a film or video taken by someone walking with the camera while filming.) Walking is, ironically enough, what cured me of the oscillopsia and improved my balance significantly overall. It is very important that you exercise your vestibular system, especially by walking over uneven ground (as long as you take enough care to do it safely). This will retrain your brain to ignore the aberrant signals being sent by your vestibular system on your AN side and rely more on your vision and propioceptors for sense of balance. Walking, or doing anything that makes you dizzy, will feel lousy at first, but it is what you absolutely must do in order to feel better and improve your balance.

Best wishes,
TW
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

miriamgail

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Re: 9-year study from SBI
« Reply #21 on: November 01, 2010, 01:21:45 am »
Dr. Shahinian (of the keyhole apprach)  has been sued for malpractice 17 times in his career, and just lost a huge malpractice case. He is not trained as a neurosurgeon. Please see this link:

http://articles.latimes.com/2010/apr/09/local/la-me-malpractice9-2010apr09

Miriam

leapyrtwins

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Re: 9-year study from SBI
« Reply #22 on: November 01, 2010, 05:46:16 am »
Very interesting article, Miriam.

Thanks for posting it.

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

Tumbleweed

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Re: 9-year study from SBI
« Reply #23 on: November 01, 2010, 02:44:17 pm »
Interesting article. It sounds like he removed another tumor (the "brown lesion" noted in the article) from the patient's IAC. Odd that that wasn't an AN, despite its location. What else could it have been? A facial-nerve schwannoma? I suspect the author of the article may have been confused in their reporting and the article isn't quite totally accurate. It is also likely misleading in at least one aspect: it reports that the patient in question lost their hearing and has chronic headaches, but that is just as (or more) likely to have occurred as a result of the followup conventional surgery he underwent than from the minimally invasive approach Dr. Shahinian took.

I've seen similar allegations against this doctor before. It's interesting that he has prevailed in most of the suits brought against him. The question is how many has he lost? Everyone makes at least one or two big mistakes over the course of their professional career, no matter what the profession. Did he lose just one case? Two cases? Eight?

I would be very interested to see an informal unbiased (patient-generated) survey started on this forum wherein people who have had surgery performed by Dr. Shahinian report their opinions of how successful their operation was. I would personally not be detered by bad press from having him perform my surgery if the results were overwhelmingly favorable. But this article does raise my eyebrows yet again.

Best wishes,
TW
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

jerseygirl

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Re: 9-year study from SBI
« Reply #24 on: November 01, 2010, 05:03:44 pm »
I believe this article has been posted here before. It proves two things to me: endoscopic surgery might not work out, just like any other surgery, and it is not a "procedure", like it is sometimes called, but a real brain surgery with far-reaching consequences for a patient. As far as Dr. Sh being sued, ALL neurosurgeons are sued sometime in their careers and that is why they have one of the highest malpractice insurance premiums of any medical profession. Brain surgery is risky business by nature. We just do not hear routinely about lawsuits against  other neurosurgeons.

Fear of being sued also keeps doctors from taking complicated cases. Thus, doctors who do not undertake risky surgeries, do not have the necessary skills to operate. I was a very challenging case and some doctors just refused to operate. This doctors are in held in high esteem  by both the medical profession and their patients. May be they have less lawsuits against them, but I wouldn't fare very well with their advice. I am glad Dr. Sh exists and, regardless of how many times he is sued, he had the necessary skill to solve my case. The best part of the experience was : NO HEADACHES!

I have to note, though, that I do not like to read about failures, regardless of where they come from.

                                           Eve
Right side AN (6x3x3 cm) removed in 1988 by Drs. Benjamin & Cohen at NYU (16 hrs); nerves involved III - XII.
Regrowth at the brainstem 2.5 cm removed by Dr.Shahinian in 4 hrs at SBI (hopefully, this time forever); nerves involved IV - X with VIII missing. No facial or swallowing issues.

captoats

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Re: 9-year study from SBI
« Reply #25 on: November 01, 2010, 10:40:14 pm »
Yes that article is old news from earlier this year.  I have researched this doctor and the only judgment against him is this one, and it is under appeal at that.  A California doctor friend of mine informs me that brain surgeons get sued all the time as someone else noted.  Int restingly, if the award is under $30,000, it's not on the doctors record.   I would like to know where the author got the 17 lawsuit number because I haven't been able to find case history's for them.

TOM101

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Re: 9-year study from SBI
« Reply #26 on: November 11, 2010, 09:17:43 pm »
Why do you say 31% facial paralysis? did you have a large an. The SBI study says 7% over time. What stats do you have on CK?
I was strongly leaning that way but am going to see SBI next week. Would appreciate any help. Thanks Tom

Tumbleweed

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Re: 9-year study from SBI
« Reply #27 on: November 11, 2010, 09:27:24 pm »
Tom, please use the Quote button to quote someone so we know whose quote you are addressing with your followup question. That way we can better understand your question.

Thank you!

TW
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08