Author Topic: Dr. Jason Sheehan - University of Virginia - Gamma Knife  (Read 33398 times)

Blw

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Re: Dr. Jason Sheehan - University of Virginia - Gamma Knife
« Reply #30 on: July 04, 2016, 10:08:57 pm »
Glad the eye thing resolved McCrue. I'm in for my 6 month MRI in a couple weeks. Some symptoms have kicked up the last month. No big deal. I expected them. Compared to when I became symptomatic, this is easy. All my symptoms appeared suddenly over a two week period--balance, dry eye, facial droop, massive localized headache, and each resolved.

mcrue

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Re: Dr. Jason Sheehan - University of Virginia - Gamma Knife
« Reply #31 on: July 05, 2016, 01:43:11 am »
Thanks Janey and BLW.

One of their favorite words at UVA was the word "transient," as most symptoms from Gamma Knife are transient/temporary during the first two-to-three years post=op.

My fatigue kicked in within the first week post-op; however, my eye issues stopped after the first 3 months. The headache and fatigue are most prevalent, along with the constant tinnitus and declining hearing.

Glad to hear your symptoms resolved. Keep us updated on your follow-up MRI.
5/19/2015 - 40% sudden hearing loss + tinnitus right ear

6/26/2015 - AN diagnosed by MRI - 14mm x 7mm + 3mm extension

8/26/2015 - WIDEX "ZEN" hearing aid for my catastrophic tinnitus

12/15/2015: 18mm x 9mm + 9mm extension (5mm AGGRESSIVE GROWTH in 5 months)

3/03/2016:   Gamma Knife - Dr. Sheehan

Blw

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Re: Dr. Jason Sheehan - University of Virginia - Gamma Knife
« Reply #32 on: July 05, 2016, 11:51:11 am »
Yup. Best not to get anxious until the doctors give you a reason to be.

Blw

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Re: Dr. Jason Sheehan - University of Virginia - Gamma Knife
« Reply #33 on: July 06, 2016, 10:03:40 pm »
LOL! I just reread your description of when they put the head frame on and that is exactly as I describe it--pit stop at Indy. They had a room ful of people, bunch of quick shots, IV, and they bolt that thing on in seconds. Pretty funny. I didn't get enough sedative so I was talking the whole time and remembered everything.

mcrue

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Re: Dr. Jason Sheehan - University of Virginia - Gamma Knife
« Reply #34 on: July 11, 2016, 02:18:42 am »
LOL! I just reread your description of when they put the head frame on and that is exactly as I describe it--pit stop at Indy. They had a room ful of people, bunch of quick shots, IV, and they bolt that thing on in seconds. Pretty funny. I didn't get enough sedative so I was talking the whole time and remembered everything.

Yes, I borrowed your words. A pit-stop is exactly how it felt to have the mask placed on my skull. I was also awake the entire time and talking as well. I remembered everything too. I think it's designed that way.

On other fronts, I would do anything to stop my constant tinnitus. The reality that I have to live with this tormenting condition for the rest of my entire life is just awful.
5/19/2015 - 40% sudden hearing loss + tinnitus right ear

6/26/2015 - AN diagnosed by MRI - 14mm x 7mm + 3mm extension

8/26/2015 - WIDEX "ZEN" hearing aid for my catastrophic tinnitus

12/15/2015: 18mm x 9mm + 9mm extension (5mm AGGRESSIVE GROWTH in 5 months)

3/03/2016:   Gamma Knife - Dr. Sheehan

mcrue

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Re: Dr. Jason Sheehan - University of Virginia - Gamma Knife
« Reply #35 on: July 11, 2016, 03:55:34 am »
Yup. Best not to get anxious until the doctors give you a reason to be.

I think a lot of patients with AN's (myself included) suffer from "reassurance seeking" and wanting to make sure we are making the absolute right decision for our unique circumstances, etc.

http://ocdla.com/reassurance-seeking-ocd-anxiety-1952

I, for one, like to know all the facts. There is no such thing (for me) as too much information. While others like to have things "sugar-coated" and may like hear fluff like "everything will be okay." I want to know worse case scenarios, etc.

For example, at my last local AN support group i was informing this new member that Dr. Chang advised me that 1 out of every 500 people who have surgery will die on the table, compared to 1 out of 20,000 who may get cancer from radiation treatment.

Needless-to-say, some of the "everything will be okay" crowd were very unhappy that I mentioned these facts/statistics (from Stanford's Dr Chang) to our new member who was swaying back-and-forth between microsurgery or radiation treatment.

In my opinion, we don't attend group for fluff.  We attend group for information to make educated decisions.

Anyways, I digress.
« Last Edit: July 11, 2016, 04:05:41 am by mcrue »
5/19/2015 - 40% sudden hearing loss + tinnitus right ear

6/26/2015 - AN diagnosed by MRI - 14mm x 7mm + 3mm extension

8/26/2015 - WIDEX "ZEN" hearing aid for my catastrophic tinnitus

12/15/2015: 18mm x 9mm + 9mm extension (5mm AGGRESSIVE GROWTH in 5 months)

3/03/2016:   Gamma Knife - Dr. Sheehan

Blw

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Re: Dr. Jason Sheehan - University of Virginia - Gamma Knife
« Reply #36 on: July 11, 2016, 10:20:59 pm »
Oh yeah--that was my bigest focus, what happens if it fails? For radiation, you can repeat or have surgery. My hope is that I get 10 years or so before it fails, if it does. That's a lifetime in medical reasearch, so my thinking is they could reradiate with even newer more accurate technology. As for as catatrophies, my exact reason for avoiding surgery. 1) It is major surgery of the brain type, and all the problems that can go wrong with major surgery, 2) If they damage the facial nerve, you are in a whole new world of problems. 3) Surprisingly, surgery can fail to remove all the tumor and you get regrowth.

UpstateNY

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Re: Dr. Jason Sheehan - University of Virginia - Gamma Knife
« Reply #37 on: July 12, 2016, 07:17:25 am »
Quote
For example, at my last local AN support group i was informing this new member that Dr. Chang advised me that 1 out of every 500 people who have surgery will die on the table, compared to 1 out of 20,000 who may get cancer from radiation treatment.

Sorry Mcrue, but I have to jump in here because 1 in 500 people dying on the table from surgery is not a real number and would certainly concern me as well.  Such an outcome is significantly based on the personal medical history and physical condition of the patient.  A patient going into surgery with a poor medical history and condition may have the odds of 1 in 500.  However, a person with a good medical history and condition could be more like 1 in 100,000.  There are risk calculators available if a person wants to find out their odds that take into consideration their medical history and physical condition.
Apr 2015: Diagnosed with 8mm AN at age 49
Oct 2015: MRI showed growth to 12mm
Feb 2016: Completely removed via Transcochlear approach at House Clinic; no facial/eye issues, balance improved
Aug 2016: MRI shows no regrowth/residual tumor

My story:  http://www.anausa.org/smf/index.php?topic=22581.0

Blw

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Re: Dr. Jason Sheehan - University of Virginia - Gamma Knife
« Reply #38 on: July 12, 2016, 01:32:27 pm »
Actually, older studies say it is higher--about 1%, more recent studies have it at about 2.5 per 500 (0.5%). I think that number can be influenced by a lot of factors. Many are patient specific (co morbidities), which could cause the odds to go up or down. Some are not--infection, competency of the medical team, length of surgery (some of these operations can be crazy long), type of surgery, quality of the hospital, quality of the aftercare (dying on the table is one thing, but fatal complications can arise once you wake up). In any event, this is major surgery and it has identifiable risks that are certainly real.

UpstateNY

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Re: Dr. Jason Sheehan - University of Virginia - Gamma Knife
« Reply #39 on: July 12, 2016, 09:23:11 pm »
I would certainly agree that older studies would have higher rates and all of the factors you mention do come into play.  Many years ago, very few people made it through surgery.  However, surgical techniques have significantly improved through the years just as radiosurgery accuracy has improved.

The top surgeons I spoke with had zero deaths on the operating table and they have performed thousands of surgeries combined.

In general, I believe most surgical fatalities for any type of procedure arise from complications with anesthesia, which is why the medical history and physical condition play important roles.

« Last Edit: July 12, 2016, 09:58:30 pm by UpstateNY »
Apr 2015: Diagnosed with 8mm AN at age 49
Oct 2015: MRI showed growth to 12mm
Feb 2016: Completely removed via Transcochlear approach at House Clinic; no facial/eye issues, balance improved
Aug 2016: MRI shows no regrowth/residual tumor

My story:  http://www.anausa.org/smf/index.php?topic=22581.0

mcrue

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Re: Dr. Jason Sheehan - University of Virginia - Gamma Knife
« Reply #40 on: July 12, 2016, 10:12:11 pm »
Quote
For example, at my last local AN support group i was informing this new member that Dr. Chang advised me that 1 out of every 500 people who have surgery will die on the table, compared to 1 out of 20,000 who may get cancer from radiation treatment.

Sorry Mcrue, but I have to jump in here because 1 in 500 people dying on the table from surgery is not a real number and would certainly concern me as well.  Such an outcome is significantly based on the personal medical history and physical condition of the patient.  A patient going into surgery with a poor medical history and condition may have the odds of 1 in 500.  However, a person with a good medical history and condition could be more like 1 in 100,000.  There are risk calculators available if a person wants to find out their odds that take into consideration their medical history and physical condition.

Sorry UpstateNY, you can chime in all you like; however,  this is the statistic Stanford-educated Dr. Chang freely gives out to several of his patients (not just to me) in an attempt to put into perspective the risk regarding developing cancer from radiation as opposed to dying on the operating table.

Dr. Chang is a highly respected, world-renowned surgeon considered at the top of his field. It's a sobering statistic in my view.

One of the things they always teach you in Journalism school is to cite your sources and back-up your facts. If you have any issues with the statistic, please contact Dr. Chang at Stanford for clarification.
« Last Edit: July 12, 2016, 10:48:46 pm by mcrue »
5/19/2015 - 40% sudden hearing loss + tinnitus right ear

6/26/2015 - AN diagnosed by MRI - 14mm x 7mm + 3mm extension

8/26/2015 - WIDEX "ZEN" hearing aid for my catastrophic tinnitus

12/15/2015: 18mm x 9mm + 9mm extension (5mm AGGRESSIVE GROWTH in 5 months)

3/03/2016:   Gamma Knife - Dr. Sheehan

mcrue

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Re: Dr. Jason Sheehan - University of Virginia - Gamma Knife
« Reply #41 on: July 12, 2016, 10:13:43 pm »
Oh yeah--that was my bigest focus, what happens if it fails? For radiation, you can repeat or have surgery. My hope is that I get 10 years or so before it fails, if it does. That's a lifetime in medical reasearch, so my thinking is they could reradiate with even newer more accurate technology. As for as catatrophies, my exact reason for avoiding surgery. 1) It is major surgery of the brain type, and all the problems that can go wrong with major surgery, 2) If they damage the facial nerve, you are in a whole new world of problems. 3) Surprisingly, surgery can fail to remove all the tumor and you get regrowth.

BLW, I agree. I 'm very happy to avoid brain surgery at all costs. As you mentioned,  1) It is major surgery of the brain type, and all the problems that can go wrong with major surgery, 2) If they damage the facial nerve, you are in a whole new world of problems. 3) Surprisingly, surgery can fail to remove all the tumor and you get regrowth.

Good luck with your upcoming MRI.
5/19/2015 - 40% sudden hearing loss + tinnitus right ear

6/26/2015 - AN diagnosed by MRI - 14mm x 7mm + 3mm extension

8/26/2015 - WIDEX "ZEN" hearing aid for my catastrophic tinnitus

12/15/2015: 18mm x 9mm + 9mm extension (5mm AGGRESSIVE GROWTH in 5 months)

3/03/2016:   Gamma Knife - Dr. Sheehan

mcrue

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Re: Dr. Jason Sheehan - University of Virginia - Gamma Knife
« Reply #42 on: July 12, 2016, 10:18:51 pm »

In general, I believe most surgical fatalities for any type of procedure arise from complications with anesthesia, which is why the medical history and physical condition play important roles.

Considering 2/3 of the country are obese, I think the stat is accurate.
I didn't pull the stat out of a hat.
I highly doubt Dr. Chang would mislead his patients.

I also knew someone who was in excellent health with a great team and didn't make it out of surgery. I think PaulW also recalled a situation similar.

To suggest brain surgery in the year 2016 is safer than radiation treatment for Acoustic Neuroma citing fears of developing radiation-induced cancer just isn't accurate.

The entire reason for citing the stat is to put patients fears/concerns into proper perspective.
« Last Edit: July 12, 2016, 10:39:36 pm by mcrue »
5/19/2015 - 40% sudden hearing loss + tinnitus right ear

6/26/2015 - AN diagnosed by MRI - 14mm x 7mm + 3mm extension

8/26/2015 - WIDEX "ZEN" hearing aid for my catastrophic tinnitus

12/15/2015: 18mm x 9mm + 9mm extension (5mm AGGRESSIVE GROWTH in 5 months)

3/03/2016:   Gamma Knife - Dr. Sheehan

UpstateNY

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Re: Dr. Jason Sheehan - University of Virginia - Gamma Knife
« Reply #43 on: July 12, 2016, 11:21:30 pm »
mcrue, my point is that the stats you have from Dr. Chang are much different than those from other physicians and centers of excellence (which they openly share).  Maybe Stanford just has worse surgical results than other facilities because they are biased towards Cyberknife for most patients and only perform microsurgery on the largest and most difficult ANs.  Whatever the answer is, it is important that those choosing a procedure are not skewed by the results from one physician, but look at the results from the facility/physician they are considering treatment from.

I'm not advocating any particular procedure because both surgery and radiation have risks and pros/cons, just looking to clarify the data.   Of course, we are all also welcome to our own opinion, but I am more a data driven person.
Apr 2015: Diagnosed with 8mm AN at age 49
Oct 2015: MRI showed growth to 12mm
Feb 2016: Completely removed via Transcochlear approach at House Clinic; no facial/eye issues, balance improved
Aug 2016: MRI shows no regrowth/residual tumor

My story:  http://www.anausa.org/smf/index.php?topic=22581.0

mcrue

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Re: Dr. Jason Sheehan - University of Virginia - Gamma Knife
« Reply #44 on: July 12, 2016, 11:58:26 pm »
mcrue, my point is that the stats you have from Dr. Chang are much different than those from other physicians and centers of excellence (which they openly share).  Maybe Stanford just has worse surgical results than other facilities because they are biased towards Cyberknife for most patients and only perform microsurgery on the largest and most difficult ANs.  Whatever the answer is, it is important that those choosing a procedure are not skewed by the results from one physician, but look at the results from the facility/physician they are considering treatment from.

I'm not advocating any particular procedure because both surgery and radiation have risks and pros/cons, just looking to clarify the data.   Of course, we are all also welcome to our own opinion, but I am more a data driven person.


UpstateNY, I am a fact-driven person as well, and as you know statistics in general can be manipulated/swayed in many different ways to favor almost any result. 

Stanford is known for its world-renowned higher education and is one of the centers of excellence for treating acoustic neuromas. I highly doubt they have lower surgical results, as you implied, compared to other institutions.

As you know, many people have even accused the House Clinic to be biased towards microsurgery, similar as you have suggested Dr. Chang is in favor towards Cyber knife.

To make your point, Dr. Schwartz said he has only lost 1 person in his entire career from an untreated blood clot several weeks post-op. So yes, the team makes a huge difference. But that doesn't take away from the stat Dr. Chang provided that on average, 1 in 500 die on the table. Not at House. Not at Stanford. But on average.

It is important for those choosing a procedure to absorb the facts and statistics regarding AN's as a whole.

As I mentioned earlier, the bottom line is the stat was provided to give perspective to that patient who is fearful of later developing radiation-induced cancer from Cyber Knife or Gamma Knife, so they may be persuaded to favor radiation treatment.

I don't think the stat should be wholly dismissed just because it comes from a radiation oncologist. As you said, everyone is entitled and free to have their own opinions.

Again, if anyone wants clarity on the statistic provided by Dr. Chang, I advise them to contact Dr. Chang.

Best wishes.
« Last Edit: July 13, 2016, 12:01:15 am by mcrue »
5/19/2015 - 40% sudden hearing loss + tinnitus right ear

6/26/2015 - AN diagnosed by MRI - 14mm x 7mm + 3mm extension

8/26/2015 - WIDEX "ZEN" hearing aid for my catastrophic tinnitus

12/15/2015: 18mm x 9mm + 9mm extension (5mm AGGRESSIVE GROWTH in 5 months)

3/03/2016:   Gamma Knife - Dr. Sheehan

 


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