Author Topic: My Gamma Knife experience at UPMC (up to 3 year follow-up in comments)  (Read 22353 times)

ASG

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Re: My Gamma Knife experience at UPMC (one month follow-up in comments)
« Reply #15 on: November 18, 2013, 08:27:09 pm »
Thanks so much for sharing your story Sarah.  Your positive attitude is truly inspiring.  I guess you are just the type of person that can get through anything!  I will try to have some of your tenacious spirit when going through my follow up MRI's!
2.9 x 2.6 AN left side
GK 9/20/13 w/ Dr. Lunsford @ UPMC

June, 2015: 2.1 x 1.2

ASG

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Re: My Gamma Knife experience at UPMC (one month follow-up in comments)
« Reply #16 on: December 18, 2013, 10:10:08 am »
Hi everyone,

I finally heard back from the geneticist with my NF2 results.  I thought I would post a 3-month post-GK update on how I was told about my results, and how I've been feeling in general.

First, the assistant from the geneticists office told me that my blood sample showed NO signs of NF2.  This means that there is now even stronger evidence that my AN is just a random, sporadic occurrence.  There is still a small chance I am a "low level mosaic" who has the NF2 gene in a fraction of my cells so small it cannot be detected by the blood test.  Below I'll provide lots of detail on this in case there is anyone else out there in the same boat as me who's worried about NF2.  If you just want to know how I'm feeling skip to the last paragraph.

Prior to the test, I was told the likelihood that a 31 year old person with a unilateral AN, no other tumors, and no family history of NF2 was 10% (meaning 90% chance sporadic occurrence).  When the geneticist's assistant told me the test was negative, I asked how that might modify my odds.  She said, "Well, the test is sensitive enough to catch about 65-70% of mosaic cases, so I guess I'd say the odds you are a mosaic are now 3%".  However, she felt she wanted to talk to the geneticist in person about this and call me back (which I appreciated).  According to the geneticist, the odds I'm a mosaic NF2 are "much lower than 3%" but he "didn't want to put a number on it" (love when doctors do that) because "there's so much variability between studies".   

Furthermore, even if I am a low level mosaic, that might not mean anything depending on how the fraction of NF2 cells is distributed in my body.  If no NF2 cells are on present on the other vestibular nerve, I won't develop bilateral tumors.  Therefore the likelihood that I eventually develop a tumor on the other side is incredibly small, but not zero.

Finally, if the odds I'm a mosaic NF2 are less than 3%, the odds I've passed this on to my children (we are expecting our second child this summer) are even smaller.  Because they couldn't identify an NF2 signature in me they cannot test my daughter because they don't know what to look for (I don't get the rationale for this but whatever).  Interestingly, the geneticist said that in 5-10 years genetics testing will have advanced to the point that I could learn definitively if I have ANY NF2 cells in my body at all (even if an incredibly low number).

I know for many, going through the whole process of genetics testing wouldn't be worth it just to go from 10% likelihood to less than 3%, but it was for me.  I'm glad I have all the data and the news is a huge relief.  I can now place my NF2 worries in the same box in my mind where I put tornadoes destroying my house and getting e coli from eating a spinach salad.

Meanwhile, its been 3 months since I had GK at UPMC and I'm feeling very good.  About 6 weeks post GK I did notice some episodes of feeling light headed.  My head would feel slight pressure like I was on an airplane or something, accompanied by an increase in my tinnitus. These episodes lasted for just a few seconds and were in no way impairing, just interesting.  I was going to email Dr. Lunsford's office to confirm this was a normal experience, but the episodes went away after a few days and haven't returned.

Beyond that I just have the same AN symptoms I had pre-treatment- a little bit of imbalance, some tinnitus, and difficulty discerning high frequency speech in the left ear.  I believe the hearing in my left ear is still good and unchanged since GK.

Emotionally, things are just getting better and better, even while waiting on the NF2 testing.  I'm able to go longer and longer stretches where I don't think about my AN at all.  My main source of stress in life is finishing my doctoral dissertation, which feels like a luxury cruise compared to my post-diagnosis stress level.  I still remember meeting with the ENT after my diagnosis and hearing about facial paralysis and all that scary stuff.  I remember thinking I would surely have to delay my defense date by a year, or maybe even drop out of grad school all together.  Today I'm grateful to be still on pace to defend this summer.  I'm applying for jobs, spending time with my family, exercising, enjoying life, and looking forward to the future.  In many ways my life has more meaning now than it did this time last year.  Life with an AN has never been this good and I hope it stays this way.

Thank you all for listening to me unload!  Unless I have a sudden change in how I'm feeling, my next update will probably be at the 6 month mark when I have my first post-GK MRI.

Take care everyone,

Adam
« Last Edit: December 18, 2013, 10:16:26 am by ASG »
2.9 x 2.6 AN left side
GK 9/20/13 w/ Dr. Lunsford @ UPMC

June, 2015: 2.1 x 1.2

robinb

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Re: My Gamma Knife experience at UPMC (1 & 3 month follow-up in comments)
« Reply #17 on: December 23, 2013, 11:36:53 am »
Hi Adam-

Glad to see things are improving for you as time goes by. We all hope that whatever treatment we choose, what we go in with is what we end up with.

Happy Holidays!
AN Diagnosed 11-2012 right side
13mm x 7.2 mm
Gamma Knife 1/24/13
UPMC w/Dr. Lunsford
Officially a postie toastie!
See my treatment journal at: http://www.anausa.org/smf/index.php?topic=18291.0

ASG

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Re: My Gamma Knife experience at UPMC (1,3, 6 month follow-up in comments)
« Reply #18 on: March 27, 2014, 12:06:26 pm »
I just had my 6-month post-GK MRI and hearing test and thought I would share how my tumor and I are doing.

First, the hard data:

-My tumor is now approximately 1mm smaller in length and 1mm smaller in width than it was in June 2013 (when I received my diagnosis).

-According to the radiology report and Dr. Lunsford, the characteristics of the tumor have changed dramatically.  Both described these changes using terminology that make very little sense to me. The “persistent ring of enhancement” seen in June is now much more cystic; the center of the tumor is much less solid; there are now “wisps of enhancement” throughout the tumor.  Dr. Lunsford described this as a “significant loss of enhancement”.  Not sure what this means but sounds good to me.

-My hearing test showed that my hearing is unchanged.  I continue to have slight loss of tone in the highest frequencies, while my word discrimination is still 100%.

Dr. Lunsford said he is very pleased with the MRI and my hearing test.  He said the loss of enhancement likely means the tumor will continue to shrink over the next 6 to 24 months.  I’ll have my 12-month follow up MRI in September.

So that’s the hard data.  Subjectively, I’ve been feeling great over the past 6 months.  Other than a few temporary periods of increased tinnitus and dizziness (which like others I’ve correlated with changes in the weather) I’ve experienced no change in my level of functioning.  I never had to take steroids or any other medication for AN-related symptoms.

Emotionally, the intense fear and anxiety I felt when diagnosed last summer (which lasted through the shopping around/consultation process) is further and further back in the rear-view mirror.  One positive side-effect of my AN diagnosis is it made me appreciate life and having the health I have much more, and this has lead to a cascade of positive lifestyle changes that continue today (exercising, eating healthy, and managing stress better).  One worry I had with GK was if I would be constantly wondering how the AN was doing, and worrying about possible failure, in between MRI appointments.   Instead, I continue to have a healthier, more relaxed acceptance of my AN.  The day before the MRI appointment I actually had to remind myself to remember to go, because it just wasn’t on my mental radar.  I’m more confident than ever that my treatment will work out, and even if it doesn’t, that everything will be OK regardless.

For anyone who would like to talk to me about this, please don’t hesitate to PM me!

Adam
2.9 x 2.6 AN left side
GK 9/20/13 w/ Dr. Lunsford @ UPMC

June, 2015: 2.1 x 1.2

Nank

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Congrats Adam!  You  have such a positive attitude!  I love that!  I need some more of that in my life!
1.3x0.7 cm AN in right ear
Diagnosed 6/12/13
Tinnitus, ear pain
No hearing loss
GK 7/25/13

robinb

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Adam-

What awesome news!!! So happy for you!

-Robin
AN Diagnosed 11-2012 right side
13mm x 7.2 mm
Gamma Knife 1/24/13
UPMC w/Dr. Lunsford
Officially a postie toastie!
See my treatment journal at: http://www.anausa.org/smf/index.php?topic=18291.0

cathyroe

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Adam, this is such wonderful, encouraging and most of all empowering news! It gives us all a glimpse of what a positive attitude and a positive outcome looks like. I'm so thrilled for you! I saw Dr. Lunsford last month, and will probably schedule my GK for May. Reading your post and having you message me in the past few months has helped me enormously. Thank you and Blessings to you and your family!
Cathy
11/02/12  Diagnosed with AN  11mm X 5mm
05/29/13  MRI reports no change, stable
11/20/13  MRI reports 13mm X 7mm X5mm
5/20/14 MRI reports 14mm x 8 mm x 6 mm
7/29/14 GK at UPMC Lunsford. Now a Postie Toastie
1/14/15 Six Month MRI growth. 16mm X 8 mm
11/09/15  16 mm X 9 mm
9/15/16   17 mm x 11 mm x 8

ASG

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Thanks so much for the kind words Robin, Nank, and Cathy!  Robin, just the other day I was remembering how I unknowingly sent my original slides to neurosurgery at Pitt, erroneously thinking it was Dr. Lunsford's group.  If you hadn't noticed that and told me the correct address who knows where I'd be today!  Its been inspiring to read many hopeful GK (and CK and surgery) recovery stories on this site including yours. 

Another piece of news I forgot to mention before- I've just accepted a job at UPMC (dept. of psychiatry).  Total coincidence but working two blocks from Dr. Lunsford's office is a nice perk.  My family and I will be moving to Pittsburgh this summer, and I'll have my future follow up appointments at UPMC with Dr. Lunsford.  Dr. Lunsford said I could have my hearing test, MRI, and feedback w/ him all in the same day at the center.

So for those planning on having GK at UPMC this fall, PM me if you'd like to grab a sandwich after your procedure!
« Last Edit: March 28, 2014, 03:28:21 pm by ASG »
2.9 x 2.6 AN left side
GK 9/20/13 w/ Dr. Lunsford @ UPMC

June, 2015: 2.1 x 1.2

Petrone

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Great news Adam!  Your positive outlook and proactive healthy living will be an inspiration to many on this forum, especially for newbies who need to hear that there are success stories out there.  I also continue to put my AN experience behind me as I get on with life.  I am scheduled for my 1-year post-GK MRI and audiology exam next week and will share results then. - Petrone   

1.4cm diagnosed 3/2010
W&W until 1.8cm by 10/2012
GK performed 4/17/2013 at Froedtert in WI
2 years after GK - 1.6cm
3 years after GK - 1.4cm

ASG

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Thanks Petrone!  I'll be very interested to hear how your 1 year follow up goes!

Adam
2.9 x 2.6 AN left side
GK 9/20/13 w/ Dr. Lunsford @ UPMC

June, 2015: 2.1 x 1.2

robinb

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Hi Adam-

Just saw your post about moving to Pittsburgh. Congrats on the new job!

I hope I am never there again for medical reasons, but if I am will be sure to contact you. Looking forward to continued good outcomes for us all!
AN Diagnosed 11-2012 right side
13mm x 7.2 mm
Gamma Knife 1/24/13
UPMC w/Dr. Lunsford
Officially a postie toastie!
See my treatment journal at: http://www.anausa.org/smf/index.php?topic=18291.0

ASG

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Re: My Gamma Knife experience at UPMC (up to 1 year follow-up in comments)
« Reply #26 on: September 24, 2014, 07:59:17 pm »
Hi everyone,

I had my one year post-GK MRI and follow up and wanted to share my results.

Because my family and I moved to Pittsburgh last July (I now work at University of Pittsburgh), I was able to have the follow up at UPMC with Dr. Lunsford. In the morning I had an MRI, then went right to an audiogram, and then went right to Dr. Lunsford where he interpreted everything. The whole thing took less than two hours.

The verdict: my AN continues to die and shrink. The interior of the tumor is completely black with just a thin white border around the edges. Its definitely a bit smaller, but hard to tell by how much because the shape is so different. Dr. Lunsford noted that last year's MRI showed the AN pressing into the brainstem and distorting the 4th ventricle. Now the 4th ventricle looks normal.

My audiogram was exactly the same as a year ago- mild hearing loss in higher tones but no problems with speech discrimination. I continue to have the same mild symptoms I had before GK- mild imbalance, tinnitus, and some facial numbness.

Dr. Lunsford was very pleased and said this is what he hopes to see in his patients. He believes the tumor will continue to shrink. No uncorking any champagne though. My next follow up is 9-months from now and I might stay at yearly follow-ups for a while because I'm younger and the tumor was on the larger side. According to Dr. Lunsford the year 2 and 3 MRIs are usually the biggest indicators of whether the GK is ultimately successful.

Obviously I'm thrilled with the results. The last 6 months I've been thinking about my AN less and less and life is good. I hope this story is helpful to those who have just been diagnosed or are considering GK/CK. I am very grateful I followed the advice of this site and sent my MRI to both surgery and radiation experts, even though the very first ENT I spoke to said my tumor "had to come out", that my tumor was "too large" and I was "too young" to have radiation. For the newly diagnosed- I can't overstate how important sending my slides to different doctors was in understanding my options and coming to the best decision for me. I am also very grateful to have met people through this site willing to share their story and provide support (while politely ignoring those who provide alarmist, pseudo-medical opinions).

If anyone out there would like to know more about my experience, don't hesitate to send me a PM! And if anyone is traveling to Pittsburgh for GK with Lunsford, I'd be happy to meet up for coffee while you're here!

I'll send out another update next summer.

Adam
2.9 x 2.6 AN left side
GK 9/20/13 w/ Dr. Lunsford @ UPMC

June, 2015: 2.1 x 1.2

robinb

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Re: My Gamma Knife experience at UPMC (up to 1 year follow-up in comments)
« Reply #27 on: September 30, 2014, 09:36:03 am »
Hi Adam-

So glad to see your great results, thats awesome.

I have my next MRI (18 mos post GK) scheduled for mid October and hope to see something similar,

Stay well!!
AN Diagnosed 11-2012 right side
13mm x 7.2 mm
Gamma Knife 1/24/13
UPMC w/Dr. Lunsford
Officially a postie toastie!
See my treatment journal at: http://www.anausa.org/smf/index.php?topic=18291.0

ASG

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Re: My Gamma Knife experience at UPMC (up to 1 year follow-up in comments)
« Reply #28 on: October 02, 2014, 08:56:01 pm »
Thanks Robin! I hoe you're still feeling well too. Keep us posted on your 18 month results!
2.9 x 2.6 AN left side
GK 9/20/13 w/ Dr. Lunsford @ UPMC

June, 2015: 2.1 x 1.2

ASG

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Hey everyone,

Just had my 2 year GK follow up at UPMC with Dr. Lunsford on Monday (I live in Pittsburgh now so easy to see him for the follow ups). Technically my two year GK anniversary is in September but Dr. Lunsford wanted to put me on a summer schedule.

The tumor has shrunk around 60%: its was about 10 cubic centimeters at the time I had GK and is now 4.2 cubic centimeters. I think the tumor is now 2.1x1.2x1.2 or something like that. Still has some dark spots and "bubbles" and Dr. Lunsford thinks it will probably shrink a bit more.

My hearing has stayed the same or perhaps gotten slightly better. Word recognition jumped back to 100% and I still have the same slight hearing loss at higher tones on the AN side (for whatever its worth I think my hearing is the same and the change is just random variation). Despite this Lunsford said I should still expect a 50% chance of hearing preservation long term. Facial numbness is now totally gone. My balance issues haven't changed from what I can tell. I still feel a little wobbly, or like I'm getting my "sea legs" sometimes. If I'm in a situation where I can't use my eyes or my feet to balance I'm more likely to wobble. Crouching like I'm playing catcher can be tough for example. Most of the time it doesn't bother me though. Tinnitus is the same.

One weird thing is that Dr. Lunsford said I now have a very subtle facial asymmetry. I was shocked to hear this. He said its so subtle no one would ever be able to tell. If I make a super/extreme ugly face it looks a bit stronger on the right (non-AN side). Lunsford said this would either stay as it is or go away (not get worse). I guess even though the tumor is shrinking as it changes shape it can touch the nerves in different ways. I was a little self conscious about this at first, and made lots of faces in the mirror the rest of the day, but now I'm over it. There really is no way a person could see it unless I pointed it out and made an extreme face.

Dr. Lunsford said I'll have my next MRI a year from now, and if that looks good, we can space future follow ups by 2 years and so forth.

Woo hoo! And life is good, I don't stress out about my AN anymore. I used to do anything to avoid feeling AN symptoms, like cutting out coffee and alcohol. Now I drink coffee every morning and a glass of wine most nights. Doesn't bother me anymore that it makes the tinnitus and balance a bit worse, I'd rather do the things I like!

Once again anyone out there who wants to chat, feel free to message me.

Adam
2.9 x 2.6 AN left side
GK 9/20/13 w/ Dr. Lunsford @ UPMC

June, 2015: 2.1 x 1.2