ANA Discussion Forum
Treatment Options => Radiation / Radiosurgery => Topic started by: ASG on September 22, 2013, 08:28:39 pm
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I thought I would add to what others have done here and describe my experience with GK at UPMC. I hope this is helpful for anyone wondering what to expect with Gamma Knife with Dr. Lunsford's team.
My wife and I drove from Michigan to Pittsburgh on Wednesday. We chose to stay at Family House- which is housing provided for UPMC patients. Its a large Victorian looking house that feels sort of like a cross between a bed and breakfast, a hotel, and a college dorm. It is partially subsidized, and so was only $60 a night and just a 5 minute walk from the hospital. We weren't there long enough to get to know anyone else, but there is definitely a community vibe and feeling of comradery among the guests that I enjoyed. The rooms were small but very nice and home-y feeling.
My pre-procedure meeting with Dr. Lunsford and his team was at 11am the next day. We reviewed the history and characteristics of my tumor, how gamma knife works, and what to expect during and after treatment. Dr. Lunsford reiterated that there is a very high likelihood GK will at least halt any further growth of the tumor (which would be considered a success), and a "reasonable" chance I would retain my current level of hearing. I asked Dr. Lunsford if, in the event I lose serviceable hearing but retain some hearing nerve functioning, could I boost my hearing with a conventional hearing aid. He said I could, but not everybody finds this worthwhile.
The Gamma Knife procedure began at 5:45 the next morning. Of course, I slept terribly the night before (woke up every hour to check the clock). Once I checked in I didn't wait very long before the nurse took me back. Step one was to take an ativan and get my IV in (for more relaxation meds). I was already completely relaxed/semi-drugged up when Dr. Lunsford came in to put the head frame on. The whole thing was so easy. I really don't remember much, but I don't recall any discomfort. Then I was wheeled off to the MRI where I took a nap. Apparently Dr. Lunsford runs the MRI himself. I was relieved to hear from him that my tumor had not grown at all since June.
The coolest part of the whole procedure was when the nurse was wheeling me back to my little waiting area after the MRI. She stopped by the control room (a room with glass windows overlooking the MRI machine and GK machines) and pointed out that the Gamma Knife team was reviewing my slides and planning how to proceed with the radiation. There was Dr. Lunsford, the guy who brought GK to the US, a radiation oncologist, and a friggin' physicist huddled around a monitor looking at MY tumor. I could see them in the war room plotting critical coordinates and determining how radiation would be delegated to key areas of the AN such as the margin and where vessels intersected with the tumor (in order to destroy the blood supply to the tumor).
I drifted in and out of a few naps and watched some TV while I waited for the person in front of me to complete their time in the GK machine. After about 40 minutes it was my turn. I was excited to see that I was going to get to use the Perfexion machine. I looks like a futuristic igloo. Like everyone else has said, the machine is completely silent, you don't even know its on. I snuck in a few more naps and listened to the CD I had made for the occasion.
I was able to walk back to my waiting area where they removed the headframe. I got a headache and felt a bit nauseous after it was removed, but took some tylenol and felt OK about an hour later. We went back to our room and I took a nap. When I got up, I drank an iced coffee and felt like a million bucks. As I had resolved to do, we walked to Primanti Brothers for my victory sandwich (not the original location but they had one right in the area). As you know its important to listen to your body after treatment, and at that moment my body was telling me to destroy a large pastrami sandwich with french fries on it, and an entire side of fried pickles. It was glorious.
The next morning I took off the band aids covering the pin-hole sites. I couldn't believe how small they were, they looked like tiny little specks! Walking down the street you'd never know I even had the head frame on. I was completely fine to drive back. Since then I've basically felt like myself, just a bit more tired than usual. I'm not sure if this is because of the radiation or the lack of sleep I've had over the past few days. Only time will tell.
Overall, the entire experience was incredibly positive. UPMC, Dr. Lunsford, and the whole gamma knife team really are absolutely first class. I left Pittsburgh with no regrets whatsoever about my treatment decision (I hope I still feel this way 3 years from now).
Having an AN has been a difficult process, but at this point, I can see that its also forced me to undergo a powerful transformation, and in some ways that has been a good thing. I wasn't stress free before my diagnosis, I just filled that space with other things to worry about, like where my career and finances would be in five years, or how I stacked up against peers. Having an AN diagnosis has really lifted the veil on how silly this perspective was. Now I'm spending more time being in the moment, appreciating every day life, and having compassion for others. I'm taking better care of my body and my well-being because I appreciate life and my body more. I know there are going to be tough days ahead, but in many ways, my life has become more meaningful, and its all thanks to a clump of schwann cells (that is hopefully dying as I type this).
Please message me if you'd like more detailed about my experience. If helpful to others I can post my progress as I have my follow up MRIs.
11/2/2013- I posted a one month follow up in replies
12/18/2013- posted a three month follow up in replies
3/27/2014- posted my six month follow up in replies
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Congratulations on your completion of GK. Now you get to spend the next many years monitoring the progress of demise of your tumor. ;)
Like all of us GK participants, all we can do is assume that the GK was successful but we don't know for sure until we get to see the periodic MRIs.
I'm 9 months out from my GK and had my first post GK MRI August 1 and got to see the necrosis that we all learn to know and love. Many of our members are several years post GK and have seen the shrinkage of their tumors, something we all aspire to for our own stowaways.
Anyway, you have good reason to be optimistic and the following article will give you an idea of how tumors of various sizes progress over a period of years.
http://www.jaypeejournals.com/eJournals/ShowText.aspx?ID=1214&Type=FREE&TYP=TOP&IN=_eJournals/images/JPLOGO.gif&IID=105&isPDF=NO
The article says the following about GK:
"The current technique of using gamma knife radiosurgery to treat vestibular schwannoma offers a high rate of successful treatment and patient satisfaction with a short treatment time, no need for convalescence and a low risk of complications. The current gamma knife radiosurgery technique involves the use of magnetic resonance imaging (MRI) for targeting, the application of a low marginal dose (usually between 12 and 13 Gy) and highly conformal treatment planning using multiple small isocenters. The level of conformal treatment planning and the precision of the treatment is enhanced using the model C, Leksell gamma knife with APS (automatic positioning system) or with the Perfexion fully robotic version, allowing the use of dynamic shaping and hybrid shots (Figs 1 and 2). This technique achieves an average tumor control rate of 95%, facial nerve function preservation in up to 99% of cases and usually between 70 and 80% chance of preserving serviceable hearing."
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Hi Adam-
I was thinking about you and so glad to see your detailed post about your experience. So happy it was nice and easy for you and I hope you have continued smooth sailing.
Since I posted my details, I found that its so helpful to others to see a positive treatment as so much of what is on this site is from people that have less than great outcomes and long term life changing complications. So if you have the time, I am sure others will benefit from seeing it.
My only regret is that I didn't get a pastrami sandwich from Primanti!
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I'm so glad you had such a great experience! I love your descriptions, especially the sandwich!
Good luck to all of us in the future and to killing those ANs!!!
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Anyway, you have good reason to be optimistic and the following article will give you an idea of how tumors of various sizes progress over a period of years.
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Wow, thanks so much for sending me the link to that article. I never knew what shrinking ANs looked like and always had a hard time visualizing it. The pictures in the article are amazing, its like Gamma Knife porn or something. I really hope that I have a similar story in 10 years!
Robin and Nank- thanks so much for the well wishes. I will be sure to post updates- especially my follow up MRIs. I'm actually thinking about driving back out to Pittsburgh for my 6 month follow up. Dr. Lunsford runs the MRI himself and knows just what to pull up, so once you're out of the MRI he gives you the straight scoop and you can talk about it in person. Its a 4.5 hour drive each way but I'm not sure I have the patience to have my MRI here, read the tech report, snail mail the CD to UPMC, and then anxiously await the phone call. Plus I'd get a second crack at a delicious primanti sandwich.
You know, while I'm at it, why don't I issue my other food recommendations for the UPMC area? If the local restaurant scene weighs heavily on your treatment decision (always good to have your priorities straight), this post is for you.
Breakfast: Pamela's Diner. There's a few throughout Pittsburgh including one just a few blocks from UPMC. Very decent breakfast and they are known for their crepe-style hotcakes. I ordered them and they are nice thin pancakes with crispy edges. My wife and I ate here twice.
Lunch: The Porch. After your 11am pre-GK appt. with Dr. Lunsford, what better way to pass the time then to walk down Forbes avenue towards the Carnegie Museum (which is very cool and a nice distraction). Along the way you'll pass the Pitt Cathedral of Learning (tallest building in Western PA) and a nice lunch spot called The Porch. Good salads and light sandwiches and a nice outdoor seating areas. You order at the counter so its fast.
Dinner: Legume. This is the number 2 ranked restaurant on Yelp. Its about a mile from UPMC so a bit of a hike but totally worth it. Its high end, and expensive, but not snobby. Very extensive wine list and the food was incredible! The perfect place to go the night before GK to give your AN its last meal and toast its demise!
This is your AN travel and restaurant guide signing off!
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Adam,
It was a treat to read your thorough review. I was thinking of you on your GK day.
Having had GK w/Dr. Lunsford on 4/19/13, it was a deja vu experience to read through your detailed report. You even brought be back to Pamela's where I enjoyed a post-GK breakfast the next day.
I'm glad you feel good about your decision. Five months later I still do, too, and I'm looking forward to my upcoming MRI to see the progression of Dr. L's work. I'm not going to make the trek back to Pittsburgh to do so, and in a way that's regrettable so I can't explore your further restaurant options!
Keep doing well!
Patrick
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Adam-
At least I hit 2 out of 3 on your list; Pamela's and Legume, agree with your reviews.
However, nothing good enough to have me trek back to Pittsburgh!!
So glad you are doing well!
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I, too have just returned from my GK procedure at UPMC with Dr. Lunsford and agree with your comments about the experience.
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Hey everyone, just thought I would provide an update on how things are going one month after my Gamma Knife treatment.
Symptoms-wise, I feel really great. I had some nausea and fatigue for three days after the procedure, but it wasn't a big deal. Since then I’ve felt good and have been exercising, going to work, etc. The intensity of my AN symptoms- mild hearing loss, mild tinnitus, have remained the same. What has changed tremendously is the amount of stress and anxiety I experience in reaction to AN symptoms. In the time between when I was diagnosed and treated, every time I felt a change in my AN symptoms, such as facial tingling in a new spot, I would feel a wave of anxiety accompanied by perseverative thoughts about my AN and possible catastrophic outcomes. Now when I notice an AN symptom, it’s just in the background in a neutral way. It’s been great to feel more like my old self. I really, really hope the GK is ultimately successful because this has been great.
On another, less positive note, I met with a geneticist last Thursday to determine if I might have NF2 due to the fact that I’m on the younger side (31). The geneticist said that most likely my AN is a spontaneous occurrence and not NF2. The rationale is that even though I’m 31, if I had NF2 (either generalized or mosaic) other features should have cropped up by now (notably bilateral ANs). Unfortunately, as many posters on this board have noted, this fact does not rule out the possibility that I may have mosaic or even generalized NF2. The geneticist’s best estimate is a 10% chance of NF2. Therefore I decided to get my blood tested to see if I have the generalized type of NF2. Even if it comes back negative, there is still the possibility I have the mosaic type, but I wanted the testing to get a better sense of how vigilantly to monitor my symptoms in the future, and most importantly, the likelihood I’ve passed it on to my daughter.
The idea that I may have passed an NF2 gene onto my 19 month old daughter has been very difficult to think about. If the test comes back positive, and I have generalized NF2, it means there’s a 50% chance I passed it on to her. If it comes back negative, I could still have the mosaic type, which means a lower chance I’ve passed it on (but if I did pass on the gene, she would have it in 100% of her cells). My daughter is so beautiful and sweet and I would just be heartbroken and destroyed if this happened to her.
I don’t find out the results of the test for 6 weeks. If it comes back positive, we obviously test my daughter, and probably my siblings, right away. If it comes back negative, I will talk with the doctor about whether it’s worth it to test her. At the very least, the doctor said we should watch her carefully between the ages of 10-15 years, and make her pediatricians aware (perform more frequent audiograms, etc.)
So overall, some highs and lows. I’ll provide a 2 month post-GK update when I get the results.
Thanks for listening!
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Hi Adam-
Glad to see you are continuing to do well.
Will think positive thoughts for your daughter.
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Adam,
I just read through your posts, and its such a wonderful story! I am so happy to hear your positive thoughts!! I also had Gamma Knife at UPMC in 2009, but at that time, I worked with Dr. Kondziolka, who was in the same team as Dr Lunsford; but has moved on to NY. I had almost an exact same experience as you the day of the procedure (except I didnt get to oversee the doctors inthe war room and now i'm kinda bummed about that!) But I also was very young when I found my AN at 25 years old!
I live in the Pittsburgh Area, so we didnt get to "enjoy the sights" as you did, as we get to enjoy them all the time, and your post made me hungry for a Primanti's sandwich! Theres one 3 minutes from my house, I may have to enjoy it for lunch today ;)
I had an amazing experience with UPMC and the GK team! I am sure that your outcome in the years to come will be nothing but great, and that disgusting tumor will begin to die away!!!!!
I did unfortunatly have regrowth about 2 years post op :( which we all know is VERY UNLIKELY!!!!! only a 2% chance; but as my luck and life would have it.. there I was again, dealing with the dreaded news all over again in 2011.
I underwent removal of the disgusting tumor, which at that time I named "monster" on July 29, 2011 at UPMC and again I couldnt say more better things about my doctors (now, Dr. Paul Gardner) the staff, and my experience.
I again fell into some weird percentages with my recovery, but am not 2 1/2 years post SURGERY and I feel AMAZING!!!!
sure im deaf on one side, i get some head aches and i have some discomfort where the screws are, but I thank God every day for the amazing team of doctors I have had on my side at UPMC; my support of my family, and the support I had from this site and the amazing people here!
I pray and wish you the best of luck with your recovery, and know that you made the right decision with GK and UPMC; it really is the best decision in my opinion if it is an option!!!
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Sarah,
As a UPMC alum, all you have been through terrifies me. But your optimism, belief, and positive spirit gives me hope and encouragement! Thank you!!
P.
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My journey was defiantly challenging, but, I promise you that if I could do it all over again, I wouldnt change anything. My experiences at UPMC were great!! The troubles that I had were due to my body's reaction, and nothing to do with the care or the procedures performed at UPMC.
I know that my experience could be alarming to you, but I shared it because I believe that I had the best care available to me, and I think that you made the right decision with your doctors.
Stay positive and keep a good attitude and everything will work out great!!! I believe that we are faced with these types of challenges in part of a bigger plan that someone up above has for us; and I know that my experience has taught me lessons and gave me strength that I never would have gotten anywhere else.
Good luck and God Bless!
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Thanks for the well wishes Robin and Sarah!
Sarah, don't worry, your story definitely doesn't freak me out. In a strange way, you actually validate a lot of the reasons I had for choosing Gamma Knife over surgery. Just like you were saying, I believe the most likely outcome is that the GK works, and the second most likely outcome is that it doesn't control the tumor, but the surgery ends up being fine. I'd place you in that second category since it sounds like you are happy and living the life you want to be living. I also chatted with Dr. Gardner at one point when I was weighing options and he sounded like a nice guys. Glad you had a great experience with him.
Just out of curiosity, did you get any sense at your 6 month and 12 month follow-ups that the GK wasn't working?
I also gave my AN a nickname a while back: "'Cousty". For me, it didn't feel helpful to think of my AN as an alien or malicious invader. Instead, I like thinking of my AN as a part of my body that means well enough but is a bit clumsy and gets in the way sometimes. Its kind of like 'Cousty and I are living in a buddy cop movie. I'm the straight-laced veteran and 'Cousty is the bumbling side kick with a heart of gold.
'Cousty: "Time to make some more schwann cells for Adam!"
Me: "'Cousty you idiot this is too many schwann cells!!!" *rolls eyes*
'Cousty: "Awww man I knew I shouldn't have taken that nap!"
Hard to stay mad at the guy when I think of it that way. Don't get me wrong I still hope he fries in hell.
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My follow up scans after gamma Knife showed positive progress!! I went back every 6 months, and I think I was at the point of getting them once a year when I began to have increased symptoms of the facial spasms.
I had my first spasm during an intense laugh session with my then sister in law.. we were laughing like children when my face started to do this weird thing...I passed it off as a symptom from the tumor and didnt think much of it until it happened again, this time during a crying episode.
So, It was only happening when I was using extremem muscles in my face, again, I left it go for a few months, and then I started to notice it happening more frequently, like when I smiled or laughed just a little bit. Then it became even more frequent, where it was happening multiple times per day, sometimes even out of the blue.
When i first notived it, I did have an MRI scan done, and the doctors thought maybe it was from swelling, and they wanted to watch and wait...we did that, and I asked for a sooner than later scan due to the increase in the spasms. This is what i called "monster face" because it was a full paralysis of my right side.
When Dr. Kondzoilka gave me the report that the tumor was growing back, he was also shocked; explaining to me that in the thousands of GK procedures they had done, I was the 11th person he had seen have regrowth, and with my age and health, he was surprised.
So, he was headed to a conference that evening, and wanted to discuss my case with his other brilliantly& intelligent doctor friends.. which is what he did, and with his knowledge and their opinion, he thought it best i have the thing removed, which is when he referred me to Dr. Gardner.
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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!
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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
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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!
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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
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Congrats Adam! You have such a positive attitude! I love that! I need some more of that in my life!
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Adam-
What awesome news!!! So happy for you!
-Robin
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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
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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!
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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
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Thanks Petrone! I'll be very interested to hear how your 1 year follow up goes!
Adam
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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!
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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
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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!!
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Thanks Robin! I hoe you're still feeling well too. Keep us posted on your 18 month results!
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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
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Congratulations ASG on such great progress!!! Very encouraging to read.
I have my 2 year MRI follow up due in September and hope I do as well as you have. I've also noticed a very subtle facial asymmetry - when my face is relaxed my mouth is angled slightly higher on the right (AN) side with the left slightly lowered. It's also noticeable when I smile but other than family members who I've pointed it out to, I don't think anyone else would notice.
Wishing you continued success!
Cathie
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Hi ASG,
Thanks so much for posting your AN journey. I am still on W&W since 2013. My AN grew 4 mm this past year so my doctor wants me to think about radiation. It helps to read uplifting stories like yours.
Best of luck,
MG
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I just had my 6-month post-GK MRI and hearing test and thought I would share how my tumor and I are doing.
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.
For anyone who would like to talk to me about this, please don’t hesitate to PM me!
Adam
Thank you for this thread as it has been very helpful. Your thoughts above are the exact thoughts I would be obsessing about non-stop in my head. It's awesome that you had a terrific outcome.
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Thanks man! I have no doubt someday you'll be posting an awesome thread yourself :)
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Thank you so much for your post and follow-up posts. Your story has been extremely encouraging!
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Just had my three year follow up appointment with Dr. Lunsford this week, and things are going well.
Over the past year I've had a pretty significant improvement in my symptoms. My balance issues are almost totally gone and I can walk around in a pitch black room with almost no problems (for the first time in years). Facial numbness and tingling are also totally gone. Tinnitus is either slightly better or is unchanged and I'm just way more used to it.
Results showed that my hearing is unchanged- still 100% word recognition and slight hearing loss in upper frequencies. Dr Lunsford said the tumor appears to be continuing to respond to the treatment, is either stable or maybe had shrunken a bit more. Dr. Lunsford mentioned his group is working to publish a study showing how young people with cystic tumors (like me) are more likely to see significant shrinkage post-GK. He told me he was pleased with my progress and that I can now go two years before my next follow up.
Emotionally, I'm thinking about the AN less and less as time goes on. This is the most I've ever felt like my pre-diagnosis self. Hoping things will continue to look good at the 5 year follow up. I'll be sure to post!
Adam
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Awesome news! I had GK with Dr. Lundsford this past spring. Yours is a very encouraging report!
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Fantastic. Keep up the good work!
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Hi Adam,
So glad to hear that you are doing well! Great results on the hearing & thinking about things less and less sounds like its having a positive effect too.
wishing you continued good health...
Stella
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As I was reading your story it was as if I was telling my own!! I just had GK this morning at UPMC with Dr Lanaford and his team. It was exactly as you described it. I didn't even realize when they were placing the head frame because Inwas completely sedated coming in and out of sleep. It was great. Now I only hope it worked!
AN right side diagnosed 4-16
1.9 cm
GK UPMC Dr Lansford 7-29
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I had Gamma knife with Lunsford at UPMC today. October 2017.
Thank you for your excellent narrative. I knew exactly what to expect.
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What were your symptoms pre radiation. Have they improved over time? Could you give some details?
I’m seven months post treatment. MRI showed no tumor growth and that the tumor appeared to be dying. Still have balance issue, totally deaf we’re I had partial hearing before, and now have an eye twitch which appeared 5 weeks post then disappeared around the six month mark and now has reappeared. I find the reappearance of the twitching eye concerning.