Dr. Jason Sheehan - University of Virginia - Gamma Knife

[Blw]

Yeah, that's what I did. Just got the CDs and took care of it myself. My symptoms seem to have improved a little this week. I hope things progress well for you.

[Blw]

Results came back. Tumor is enlarged with a central area of darkening. On schedule--swelling and necrosis. I felt the swelling last month as my balance was off but feel better now. Final size was 1.1 cm, so it was on the small size. I had an appointment with my ENT today, MD/PhD, so he was quite knowledgeable. The shape of it has an extension growing towards the cochlea, so that is not great. Don't know how much radiation the cochlea got, but so far so good. Re image in 6 months.

[mcrue]

Sounds like good news BLW. Swelling and necrosis in the first 6 months.

As you know, they say the first 2 years are the roughest.

Dr. Sheehan said he made special precautions to try to minimize the radiation to my cochlea. I assume he does this with his AN patients.

It would be interesting to read what Dr. Sheehan has to say after he reviews your MRI.

Anyhow, I would be thrilled with the results, especially the central area of darkening. This means they hit the mark!

My side effects are also minimal, and transient. For the most part, the tinnitus I had pre-Gamma Knife still persist. I also have minimal dull headache and fatigue. My eye nerve spasms have subsided and are virtually gone. Short-term memory loss is still evident. The major hit for me was a hearing loss from 100% to 10% in a matter of weeks after GK. I don't have much hope it will ever return.

1. Severe tinnitus (same as pre-GK)
2. 90% hearing loss (90% decline post-GK, zero word recognition)
3. Significant fatigue / low energy.
4. Significant short term memory loss
5. Nerve spasms in back of eye balls (transient).
6. Constant dull headache
7. Minor balance issues while showering when closing my eyes.
 


Keep in mind, I'm 42, 6"3 tall, and 380 pounds. My side effects may be the result of my morbid obesity.

I'm feeling pretty well after just 7 months post-Gamma Knife, and I'm glad I traveled to Virginia and chose Gamma Knife. I have my second follow-up MRI on October 13th.

I hope to continue reading your good news BLW.

All the best.

[Blw]

Thanks. My neurotologist runs his own clinic and is an MD/PhD. He works with my neurosurgen consultant, frequent teaming up for surgery, down here who trained with Sheehan, so they are all good doctors. That my would my first suggestion to anyone, decide who the best doctors are, and use them. My MRI image was striking in that the dark area was easy to see without it even getting pointed out. My symptoms are also starting to quiet down. The research and knowing what to expect is an asset.

[Citiview]

Blw
Congrats on your necrosis. I credit you and a few others for making me more openminded to radiation. I have no idea what I will ever do if needed, but I appreciate the discussions about the topic. I would hate to think that I would be so closed minded as to never consider it as an option for a small tumor.

[Blw]

Yeah, full disclosure, I'm biased against surgery and had radiation. Having said that, I would be even more inclined than ever to avoid surgery having read of so many complications here. At the end of the day, I think the deciding factor is to never have to treat it again. When I started out, that was my main concern about radiation--easy outpatient, little side effects, and the cancer risk is really extremely low, but the failure rate is 5-15%. But there seem to be so many posts about doctors leaving some tumor behind, which to me, takes the recurrence rate as an advantage off the table because surgery can fail to stabilize the tumor as well because they may not get it all. For me, I had facial nerve involvement so surgery wasn't much of an option, and major surgery scares the crap out of me anyway. Besides that, most of the outcomes are pretty similar, success rates, etc.

[Cheryl R]

One reads of the outcomes people have on here because they are the ones who stay on here looking for others with the same outcomes.     Most of the ones who do well do not stay on and are back to the regular lives.     I have come across many ANers over 15 yrs now and the ones I have met in person have done well.      I am a 3 tumor patient due to having found to be NF2 over time.      Every person varies here due to the tumor location, size, what damage it has done to nerves and what compensation the brain and body has already compensated for.     Also the surgeon or neurotologist with much much experience.           This does not mean there are many who do not end up with SSD or some balance issues only under certain conditions.           The facial issues do not happen as often people think and are often temporary.                I have been thru all of this and hate to see how some think there are terrible outcomes with all who have AN surgery.          It really does vary with each case.                          Cheryl R

[mcrue]

I have come across many ANers over 15 yrs now and the ones I have met in person have done well. 

   

In 15 years, every single AN patient you've met has "done well?"
There were none with facial paralysis?
There were none suffering from the many sub-categories listed on this forum?

I have been thru all of this and hate to see how some think there are terrible outcomes with all who have AN surgery. 

I think one would be hard pressed to find any forum member who ever claimed "all who have AN surgery have terrible outcomes." 

I've never read or seen that anywhere on the forum.

I think BLW was merely saying why place yourself at risk if you don't have to; however, i will let him speak for himself.

[mcrue]

Yeah, full disclosure, I'm biased against surgery and had radiation. Having said that, I would be even more inclined than ever to avoid surgery having read of so many complications here. At the end of the day, I think the deciding factor is to never have to treat it again. When I started out, that was my main concern about radiation--easy outpatient, little side effects, and the cancer risk is really extremely low, but the failure rate is 5-15%. But there seem to be so many posts about doctors leaving some tumor behind, which to me, takes the recurrence rate as an advantage off the table because surgery can fail to stabilize the tumor as well because they may not get it all. For me, I had facial nerve involvement so surgery wasn't much of an option, and major surgery scares the crap out of me anyway. Besides that, most of the outcomes are pretty similar, success rates, etc.

Blw,

Eloquently said.

My thoughts exactly.

You think people would be happy we got to treat our AN's with radiation and avoid brain surgery.

[Blw]

Although I recognize as another poster noted that there are many variables that effect choice, most of my reading of the literature were reviews of case studies with hundreds of patients. Interestingly, the outcomes, defined as tumor control, for surgery or radiation were very very similar. That makes radiation an easy choice to me because it is so much less invasive. The one mitigating factor is failure. If radiation fails, surgery is more complicated, though you may be able to re-radiate, and a good surgeon can still perform successful surgery. In contrast, if surgery fails, you still have the radiation card to play. However, since both have success rates around 90%, there just seemed to me to be so much more that could go wrong with surgery, and outpatient treatment vs 5 days in the hospital with a couple in the ICU was a no brainer. I actually think that in 10-20 years surgery won't be done due to more advances in radiation.

[Cheryl R]

I should have also said met in person as have met several over the years who also have been to the Univ of Iowa as  I have and talked outside of this forum  in person.   I also have been to 5 of the AN symposiums which are no longer being held around the country.      I have come across people on here who have permanent severe issues.         The symposium did have people who did not appear to have severe issues but yes may have more than appeared.       I was thinking of the quote on here that of Blw stated of having read so many complications on here.              I wanted to get across that not all surgeries do end up with severe complications.        I myself have had a facial neuroma with the nerve severed and a nerve graft done at the same time so have been thru facial paralysis with much improvement.     Most facial issues are temporary unless the nerve was severed or badly damaged by the tumor.                  I have read on here and on the AN facebook pages  of those who do seem to feel any surgery gives bad outcomes.      No I do not remember names.               The surgery or radiation or wait and watch is a personal choice.        What ones personality is like plays a part in what treatment they may choose.              Ahead of treatment is a very scary time as one does not know always which is the best choice.          I have come across in person some ANers with some facial issues long term which are more felt by them than seen by others.           Yes I have come across a couple people in person with severe facial issues and both had their surgeries many years ago.    20 plus yrs.               There was a married couple who were on the ANA board who both had facial issues.  I think this was in 2003.                            Anyway I wanted to get across that not all surgeries are going to have severe permanent issues.                   Cheryl R               

[Blw]

I think the vast majority are successful, otherwise they wouldn't be performed. But I think the number of complications just because it is major surgery is something like 1-2%. And if you add the neuroma specific complications, it is a little higher. Still very safe. However, complications from radiation are much smaller. Still, the risk is low for both procedures and my choice was based on not wanting to have surgery and the increased risk for facial nerve problems, which would have happened in my specific case. Just couldn't risk it.

[Cheryl R]

I have sounded more and more like a ditzy female on how I have not written well exactly what I was trying to get across.       It also came to me that what one views as complications with AN surgery is another persons possible outcomes.     So I can say the people I have come across in person did not have complications but yes some have had some of the possible outcomes but were doing well in life.                       Cheryl R

[mcrue]

I think BLW and I were merely saying why place yourself at risk for those "possible outcomes" if you don't have to; however, i will let him speak for himself.

All the best.

[alabamajane]

Cheryl, I have to agree with you that any AN patient has to make their treatment choice based on their own "gut" feelings which no one else can determine for them. Sometimes this is the most difficult part of diagnosis for the patient as we are accustomed to doctors "telling " us what treatment we need for other symptoms.

I don't think, in my opinion, it is incumbent on us to tell others what the "likely, statistic" results of one treatment over another is going to be,  or what "studies show,,,,," there is always a bias in this type of response as some have said. They are biased one way or another.   The pretreatment patient should keep that bias in mind when deciding. No one can predict how any treatment or w& w will turn out. Especially us as we are NOT doctors and most have no medical training ( except you are a retired nurse!)

As you said,  there are MANY who have had successful surgeries and many who have stayed on a& w for years and many with radiation.  Period. We should keep our responses to our experiences with our ANs as that IS what we know. That is what this forum used to be about. Supporting others both new and post treatment with positive, personal experiences. There are many more out there than "horror" stories. They just don't stay on the forum.