Dr. Jason Sheehan - University of Virginia - Gamma Knife

[PaulW]

Here is a paper showing the death rates are 1:200
http://www.ncbi.nlm.nih.gov/pubmed/21856684

My education of acoustic neuromas came from a friend who died 3 weeks after surgery.
She was fit, 34 years old not overweight and in good health.
This happenned 6 years before I was diagnosed 2004..
Her surgery was 12.5 hours for a 2cm tumour.
She died from acute liver failure caused by an allergic reaction to the anaesthetic..

There are also significant numbers of people that have died from antibiotic resistant golden staph infections and meningitis. We have all heard about CSF leaks through our nose.. It doesn't take much for the golden staph virus to enter the brain via the Leak. The difference between one surgeon or another is pretty frightening. Disabling headaches, brain damage, permanant disability, loss of use of limbs, speech..
It all happens. There are doctors out there that have 2% death rates and many times that are permanantly disabled.. It's why the ANA advocates centres of excellence and choosing an experienced team.
It's not just the old, sick, and people with large tumours that have issues.
I have met a few people with very small tumours who have had debilitating problems after surgery.
If you have surgery you roll the dice.. The odds are far better with an experienced team.

[mcrue]

I agree if one is getting surgery with Dr. Schwartz (or comparable), then that statistic from Dr. Chang is pretty much irrelevant and meaningless. As everyone concurs, it depends on the team of doctors and facility....but the caveat is not everyone can afford to travel to a so-called "center of excellence."

In that case, this is where Dr. Chang's stat would become more relevant in my opinion.

[UpstateNY]

mcrue and PaulW, I appreciate the lively discussion and can certainly sense the passion in your replies.  I also believe we are all saying the same thing.  Statistics differ from place to place, so the info to pass on to those in the decision phase is to obtain the stats from the facility and physician they are being treated by.  Also, as we all have stated, Centers of Excellence or high volume centers provide the best outcomes no matter if one is considering radiation or microsurgery.

PaulW, I am very sorry to hear about your friend.  The paper you provided the link to is very interesting, but did you realize it used an inpatient sample from 1994-2003 for the analysis?  That is 13-22 years ago.  Just as radiation treatment has become more accurate over the years, surgical techniques have also significantly improved over the years. 

All of the different stats and percentages being thrown around made my head spin when determining a treatment, which is why I focused on the stats and info from the physicians I planned to be treated by.  They are required by law to provide this. 

Regarding Dr. Chang, I had also consulted with him along with at least 10 other physicians.  I believe he is extremely knowledgeable and considered the top Cyber Knife physician in the country.  My comment meant that Cyber Knife is what he primarily recommends and performs, and only suggests surgery to patients he believes are not candidates for Cyber Knife.  In my mind that is biased, but there is nothing wrong with that since all physicians favor the procedure they perform most.

[mcrue]

Well apparently my 4 and 1/2 month post Gamma Knife "follow-up" MRI indicated my tumor has swelled 2mm according to my local ENT.

It now measures 20mm x 11mm + 10mm extension.

I will speak with Dr. Sheehan hopefully in a few days.

My new and current symptoms since Gamma Knife radiosurgery are:

profound short-term memory loss
chronic fatigue
loss of energy
depression
lethargy
persistent dull headache
significant loss of hearing - word recognition reduced from 100% to only  10% in just 4 months
constant tinnitus – same as prior to treatment
blepharospasm – feels like nerves deep behind my eyes will tremor involuntarily for several seconds
(the blepharospasms have completely stopped after the first 3 months post-GK)

As long as I can still hear some sound in my AN ear, then I can still use my WIDEX hearing aid with "Zen feature" to help mask the constant tinnitus. Once my hearing is completely gone in my AN ear, God help me with treating my tinnitus.

That's a pretty breathtaking and dramatic decline in hearing in just 4 short months post-GK (from 100% to 10% word recognition). I thought I would have at least a couple years of decent hearing post-treatment, especially since they went out of their way to avoid the cochlea, etc.

But even Dr .Schwartz told me I would likely lose all my hearing in my AN ear within 10 years regardless of the treatment method I chose or watch/wait.

There are no signs of:

hydrocephalus
papilledema
tumor necrosis
brain necrosis
no facial paralysis
no balance issues

I'm hoping my short-term memory loss is one of those "TRANSIENT" symptoms, but the hearing loss is likely permanent.

My fears now are:

fear of treatment failure
when will we know if treatment was successful
tinnitus management after hearing is completely lost in AN ear 
did we hit the mark with the Gamma Knife or have a geographic miss?

The technicians weren’t able to “pin down” my head frame in the CT scan immediately prior to performing Gamma Knife because of my size. As you know, the headframe is typically “pinned down” in most cases for a reason.  In my case, the technician simply ran me through the machine “raw” without pinning down my headframe.

In any event, I have my “9 month post-op” MRI scheduled in December.Those results will determine if I should keep my current (expensive) PPO for another year and possible re-treatment, or to switch back to a more affordable HMO for the following year.

So basically the near total hearing loss on my AN ear, the never-ending constant tinnitus, the noticeable lethargy, and the profound memory loss are my "new normal" just 4 months post-Gamma Knife.

Were keeping our fingers crossed the treatment was successful and the tinnitus remains manageable. I don't have much hope regarding the memory loss and chronic fatigue.

[researcher]

So sorry you are having so many symptoms/complications. Once the procedure is over we have to live with our ever-changing list of problems. Hopefully your tumor will shrink soon and your symptoms will get better. Take care.

[Blw]

I don't know that a size increase is a bad thing. Lundsford has said no, early on. I am experiencing balance issues now and decreased hearing. My word recognition was also 100%, but I'm sure it is way down now. Look at it this way. It is unlikely that radiation would stimulate growth. The most likely explanation is what is frequently observed. It is swelling, pushing on stuff, and triggering symptoms.

[mcrue]

I wonder if an earlier course of steroids would have prevented the dramatic loss of hearing?

[mcrue]

U.S. News Ranks UVA No. 1 Hospital in Virginia, Honors 8 Specialties

https://news.virginia.edu/content/us-news-ranks-uva-no-1-hospital-virginia-honors-8-specialties?utm_source=UFacebook&utm_medium=social&utm_campaign=news

[mcrue]

Dr. Sheehan indicated my tumor "shows some slight and likely transient expansion, but a decrease in the central contrast enhancement within the tumor. This may represent a small post-treatment effect."

He would like another MRI in just 3 months.

[mcrue]

Unfortunately, my Blepharospasms (eye nerve condition post Gamma Knife) have returned.

I am 5-and-a-half months post-Gamma Knife. I had the bed sheets over my head and could feel the eye twitches/spasms move the sheets rather authoritatively. It was very alarming.

Hopefully this too shall pass.

[Blw]

Just got my 6 month MRI, waiting for results. 3T large bore. Actually not too claustrophobic.

[mcrue]

That's fantastic  BLW. I'm sending good vibes your way!

Hopefully you will have a "decrease in the central contrast enhancement within the tumor. This may represent a small post-treatment effect."

Keeping you in my thoughts for a successful result.

[mcrue]

Just got my 6 month MRI, waiting for results. 3T large bore. Actually not too claustrophobic.

Blw,

It's been a month. I hope you're doing well.
 

[Blw]

Put them in the mail this week. It is a nightmare getting and transferring medical records. Does he email results back or send by regular mail?

[mcrue]

Hello Blw,

I usually have the MRI place make me 3 (free) copies of my MRI CD before I leave their facility as soon as my new MRI is completed. This way I can mail the new MRI CD straight to Dr. Sheehan's office via USPS Priority Mail on the same day!

I usually will have the envelope already pre-addressed, so I just have to pop in the CD and pay for postage at the post office.

Dr. Sheehan will send a letter via regular USPS mail with his review and analysis of the new results.

I did receive a phone call from the nurse practitioner about 10 days prior to receiving the letter from Dr. Sheehan. This was because they noticed an issue with my MRI results (swelling of the brain 2cm) and wanted to put me on a very short-term mild course of steroids as well as schedule an earlier follow-up MRI in 3 months rather than 6 months.

I would say from the time I mailed my CD with Priority Mail (on the same day of the MRI) to the time I received Dr. Sheehan's letter, it was about 3 weeks that had transpired. It might be longer if you send via regular mail. I just send my MRI and not any medical records.

Anyways, I have an upcoming follow-up MRI on October 13.
I'm hoping to receive good results before Halloween.

I know we're in good hands with Dr. Sheehan and his fantastic world class staff at the prestigious UVA. Greg the Gamma Knife nurse is superb.

Looking forward to hearing your good results in a few weeks.

Best wishes.