Author Topic: finally got treated with GK - my story (with 1 year update)  (Read 6745 times)

ms444

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finally got treated with GK - my story (with 1 year update)
« on: November 16, 2016, 02:09:43 pm »

Following the completion of my GK treatment,  I posted a summary with regards to my decision and treatment. I have updated it to reflect how I am doing after a year. 

sorry for the length of it, hopefully it will help someone.

11/2016 - immediately following treatment:

i was diagnosed in 11/2014 at the age of 37 with a 1.7 cm AN. my symptoms were pretty significant hearing loss and some tinnitus, that had been present for about 3 years.    for 3-4 months after my diagnosis, i did tons of research and had many consultations with providers, both in person and via email/phone.  I had consultations in person at my institution in milwaukee - MCW, met with Dr. Chang at Stanford, Dr. Brackmann and Dr. Schwartz at House Clinic, and Dr. Link at Mayo Clinic. I had phone/email consultations with Drs from UPMC (Lunsford), NYU (Konziolka), Northwestern, Iowa, UCSF, and UC Irvine.   I am so grateful for all the docs that so generously offered their input.  I even registered and went to the annual meeting of the north american skull base surgery society and listened to all the lectures regarding AN’s, and met several surgeons and radiation oncologists and discussed my case.

As expected, the opinions were split with respect to surgery and radiation as the most appropriate option for me, with some providers feeling very strongly one way or another.  The docs with balanced opinions felt that either option was ok, but more often slightly favored surgery due to my young-ish age.  I also had connected with many previous patients, both surgery and radiation patients via this forum and ANA support groups, for which i am also very grateful.

Ultimately, i decided to watch it for a little while, mostly because i had other stuff going on in my life.  I had MRI’s every 6 months for 2 years, and the AN was stable.  This helped me understand the natural history of my AN.  I feel like i definitely could have continued to go on with observation, and just gotten treated once it grew, however the main reason i decided to move forward with treatment are that my insurance was going to change, my out of pocket was paid for the year, and thus i felt that it was a good time from a financial standpoint.  I also just had that feeling that i wanted to “get it over with”.

My gut reaction after initially hearing about treatment options was that i wanted to do radiation.  I did certainly struggle with this, and went back and forth quite a bit between surgery and radiation as i was gathering information and obtaining consultations.  i was afraid about needing surgery after a possible failed radiation and having a higher risk of facial nerve injury.  (i still have concerns about this to some degree, but decided to take my chances).
ultimately, the fact that my AN was stable helped me feel more comfortable with treating it with radiation, and that’s what i did.

The next decision was whether to do gamma knife (single dose, with a head frame screwed in) vs. cyberknife (3-5 fractionated doses, without an attached head frame).  after talking to many docs that do one or the other, i decided they probably are nearly equivalent, but i think providers believe in what they have at their disposal.  the main reason that pushed me to gamma knife was when i contacted a radiation oncologist at UCSF who uses both gamma knife and cyberknife at her institution.  she indicated for AN’s they typically use gamma knife due to improved conformality/precision. again, i ultimately felt that either would be fine, but felt more comfortable with gamma knife.  i got treated at my institution (MCW) with GK 2 weeks ago, and it went fine.

The treatment day:
showed up at 6 am, after receiving a little bit of IV medication (enough to make me a bit woozy and take the edge off), the head frame was applied.  this took about 5 minutes.  it was a little painful when the numbing medication was put in, but didnt last long.  what i was most concerned about was whether the front 2 screws would leave marks on my forehead.  I was pleasantly surprised to see that the front 2 screws were placed just BEHIND my hairline.  the screws DID leave a mark on either side of my temple, but they are behind the hairline so are not visible, and they are fading.  i don’t know whether this is the standard location for screw placement - but i would discuss this with the surgeon ahead of time.  i would have not been happy if the screws were in a visible part of my forehead.  and its not exactly screwed in, it's more of a "vice grip" to the skull.

i then got an MRI which took about 20 minutes.  followed by several hours of waiting while the plan was made, verified, etc.  once it was my turn, the treatment took about 45 minutes.  the machine was called ‘perfexion’, and was super quiet, i think i snoozed through much of it.  frame was removed following treatment, and this change in pressure caused quite a headache.  was given a small dose of pain med (5 mg of roxicodone) in the recovery room, and the headache subsided.  went home after that and felt mostly fine. head was a bit fuzzy, and i needed a good nap.  for the next few days, the 4 points where the screws were put in were a bit sore, and about 2/3 of my scalp was numb - which i thought was very strange.  my radiation oncologist said that the superficial occipital nerve is sometimes injured with headframe placement, and the numbness was not uncommon.  he assured me that the scalp numbness would fade in a few weeks, and it is definitely fading.

overall i feel fine, i went to work 2 days after treatment. i am a surgeon and operated all day, no problem.  have just been getting relatively minor headaches here and there.  i guess the thing with radiation is that I don’t really know if it worked, or if I will have delayed side effects if the tumor swells as a response to radiation, etc. so there is that uncertainty.  on the other hand, with these AN’s i think its a gamble no matter what you choose... so you have to just stay positive and hope for the best.  I am glad that i observed it for a while first, because if it had grown during that observation time, i think i would have likely opted for surgery.  ultimately, i made the choice that made the most sense to me, and i am comfortable with it, and feel well.   we’ll see what happens.

3/2018 - 17 months post treatment:

I had my one year follow up in 12/2017, and underwent an MRI and audiogram.  The MRI demonstrated that the tumor was stable in size, with central necrosis (dying of the tumor).  on the MRI this looked like dark tissue surrounded but a lighter rim of tissue. 

My audiogram demonstrated that my hearing was worse. (i didn't need them to do the test for me to know that, but anyways) It was bad at the time of diagnosis, with my work recognition less than 50%, now down to less than 25%.   the ENT did not think that a hearing aid would give me any benefit with this kind of hearing loss, and i am not interested in a device.  I can hear fine with my other ear, and can still localize sound, and thus it mostly does not impact me professionally or personally.  I will say that it is harder for me to decipher what is being said if I am at loud place like a restaurant or a party.  I often have to ask people to repeat themselves if they are on my 'bad' side and that is sort of annoying (for both me and the other person).

I am very glad to report that I have not had any immediate or delayed post radiation side effects such as balance issues, headaches, or facial muscle spasms related to tumor edema. I had read and heard of these, and am very glad that my post treatment course has been entirely uneventful.

My next followup will be in december 2018, fingers crossed for continued stability.


if you made it to the end of this long post - thanks for reading!
« Last Edit: March 02, 2018, 09:15:45 am by ms444 »

mac84

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Re: finally got treated with GK - my story
« Reply #1 on: November 16, 2016, 04:11:05 pm »
Thanks for the long post!

In your discussions, what was the take on long-term effects of radiation given your age?  I'm a bit past 50 and that has been my concern when thinking about GK once I am forced into a decision.
Diagnosed 10/13/14 with 1.4cm AN L side
1st Consult with Vanderbilt 11//14
W/W.  Next MRI in April 2015 at Vanderbilt.
April 2015 MRI no growth -
April 2016 MRI no growth - still 1.46cm.
4/17: No growth!
4/18: No growth! MRI 2 yrs
4/20: No growth! Symptoms stable- MRI 2 yrs

WhatnotGems

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Re: finally got treated with GK - my story
« Reply #2 on: November 17, 2016, 07:58:38 am »
While you post may have seemed long to you, it was very informative to me.  Thank you!

My concern is also the long term effects. I am presently watch and wait.
June 2016 diagnosed Acoustic Neuroma is 11 x 7 mm
2005 diagnosed Pituitary Adenoma now 16 x 6 x 7 mm

ANSydney

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Re: finally got treated with GK - my story
« Reply #3 on: November 18, 2016, 03:53:14 am »
ms444,

I read your story with great interest.

One thing that makes your story unique is that you are a surgeon. That would give you a better understanding of the mechanics, more access to information and a much better understanding of what you are reading.

It's interesting that in light of a stable tumor size that you elected intervention after 2 years.

What type of surgeon are you?

I like your statement, "with these AN's i think its a gamble no matter what you choose". It pretty well sums it up.

ms444

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Re: finally got treated with GK - my story
« Reply #4 on: November 20, 2016, 10:39:51 am »

Thanks for your replies!

To answer your questions
ANSydney - I am a surgical oncologist, specializing in breast cancer surgery.   with regards to moving forward with treatment in spite of a stable AN - i agree that I definitely could have continued to monitor, as my AN may be part of the 20-25% that don't end up growing at all.  as i mentioned in my post, part of the decision had to do with insurance logistics, but ultimately it was that FEELING of wanting to get it over with.   and with respect to my treatment choice, being in the medical field may have given me some additional access and insight, but honestly even after so much time and money spent on obtaining information via consults, conversations, and my own research, i ultimately came full circle back to my initial gut FEELING after hearing about the treatment options during my first consult after diagnosis - that i would do radiation and take my chances for the future.   but certainly, the reason i felt comfortable with this was that my AN was stable. i think i would definitely have more anxiety about my choice had i not monitored it for a bit. and if it had grown more than a few millimeters during the observation period, i would have likely went for surgery.

mac84 and WhatnotGems - with respect to long term side effects, interestingly, most of the docs i spoke with didnt really offer much insight into this.  I'm not sure if its because they don't typically deal with these phone calls.  i will say that the common threads that were communicated to me were that any symptoms that a patient currently has may get exacerbated following radiation.  hearing loss, for example would progress.  tinnitus would remain unchanged or possibly increase. headaches, if present pre-treatment may increase. the side effect that i was (and am) most concerned about are the vestibular symptoms (dizziness, imbalance, coordination, etc).  i did not have any vestibular symptoms pre-treatment.  the consensus seems to be that if a patient has vestibular symptoms, radiation is NOT a good option, as these symptoms will not go away, and they may progress.  there is a fair amount published regarding “adverse radiation events” following treatment of AN’s.  such events include the above, as well as hydrocephalus, trigeminal neuralgia, facial nn issues….from my research, these are very real, but rare side effects. my opinion is that some of it has to do with the initial size, but also the treatment planning, etc.  so i would want to go to a center that does them a lot.
malignant transformation is also a possibility, but so rare and not something that i worry about. 
i just wonder about whether it worked, and pray that it doesn’t grow, as i do NOT want to have to have surgery on a radiated AN.

I did read that the edema/swelling around the tumor starts after 3 months, and the period between 3-18 months can have unpredictable symptoms related to this edema. i did ask each doctor about this, most minimized this (Dr. Chang at Stanford probably addressed it most directly).  I was told that typically oral steroids are prescribed if this occurs.   I cannot speak with any authority on how often patients need treatment for symptoms following radiation.

so i guess i’m just waiting to see if i get any symptoms, I hope I don't!.


PaulW

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Re: finally got treated with GK - my story
« Reply #5 on: November 20, 2016, 10:33:33 pm »
Thanks for your posts MS444 an interesting read.
Some of my observations if I may.
There is a study somewhere... that shows the results after a second surgery are pretty much identical to the results of surgery after radiation.
So while it is a concern, probably no more so than going for a second surgery.

Malignant transformation.
There have a pretty good estimate of the long term risks based on radiation treatment for tonsils, adenoids, and Ringworm 50-60 years ago as well as 70 years of radiation studies on Hiroshima and Nagasaki.

Long term risk of Malignant transformation at 20 Years is 15.6 per 100000
or about 50 times less likely than dying in a car accident

https://www.ncbi.nlm.nih.gov/pubmed/25434949
   
https://www.ncbi.nlm.nih.gov/pubmed/26613171
10x5x5mm AN
Sudden Partial hearing loss 5/28/10
Diagnosed 7/4/10
CK 7/27/10
2/21/11 Swelling 13x6x7mm
10/16/11 Hearing returned, balance improved. Feel totally back to normal most days
3/1/12 Sudden Hearing loss, steroids, hearing back.
9/16/13 Life is just like before my AN. ALL Good!

Jet747

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Re: finally got treated with GK - my story
« Reply #6 on: November 21, 2016, 09:33:18 pm »
MS444,

Great post & very informative, even for someone who went through GK.

Looking forward to hearing your progress over time!!!

Best wishes to you,
Jet
RS Surgery May 2015

GK Radiation October 2015

https://www.anausa.org/smf/index.php?topic=21969.0

chriswalker

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Re: finally got treated with GK - my story
« Reply #7 on: November 28, 2016, 12:16:01 pm »
I had my gamma knife on November 15th.  My tumor was just 1cm.  The treatment went along as yours did.  My time in the machine was 32 minutes.
My downside after coming back home for recovery that evening, swelling.  Inside my head went crazy.  I completely lost my hearing. I called the doctor and was placed immediately on steroids.

I have had a lot of facial swelling since then.  There was no way I could go back to work the next day or the next two days after this.  I could barely open my eyes and the swelling has traveled down my face. 

Now, almost 2 weeks later still being weaned from the steroids, I still am having tingling in my face and lips. My hearing has returned to post gamma knife condition.  Tinnitus is way worse.  Balance is off. I find that drinking lots of water helps with the balance and dizziness.



ms444

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Re: finally got treated with GK - my story
« Reply #8 on: November 29, 2016, 05:39:48 am »

chriswalker -

I'm sorry to hear about your symptoms post gamma knife - that has to be uncomfortable...did you have any balance issues pre-treatment?  have the steroids helped with your swelling?

chriswalker

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Re: finally got treated with GK - my story
« Reply #9 on: November 29, 2016, 08:51:57 am »
I did have balance issues before the gamma knife.  That was actually my first symptom as well as dizziness.  The steroids helped with the swelling but I am being weaned off them now.  I can't stress enough for me that water really helps keep me balanced.  Plus I do balance exercises.  My doctor recommended working on my balance every day.

Thanks for the post. :)

Cscarter

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Newly diagnosis of vestibular schwannoma
« Reply #10 on: October 14, 2018, 04:22:45 pm »
My husband was recently diagnosed with a vestibular schwannoma. Living 50 miles north of Atlanta, the ENT who ordered the MRI has suggested he see someone at Emory University. We have seen a local neurogeon and discussed my husband’s options. And, due to our research, we requested to see the radiation oncologist that practices nearby. We definitely feel we need to obtain a second, and maybe a third, opinion. Does anyone have a suggestion on who we could see in the Atlanta area that has had significant experience with treating this condition?

Cityview

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Re: finally got treated with GK - my story (with 1 year update)
« Reply #11 on: October 15, 2018, 02:10:27 pm »
Cscarter
Sorry for your husband's diagnosis. I'm sure that you will get responses but I would try making a new post because I noticed this one is attached to an older post about GK.
I don't personally have any knowledge or recommendations for that area of the country.
Good Luck!

Cscarter

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Re: finally got treated with GK - my story (with 1 year update)
« Reply #12 on: October 15, 2018, 04:46:24 pm »
Thanks for noticing that! Will try again ;)

kkc

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Re: finally got treated with GK - my story (with 1 year update)
« Reply #13 on: October 19, 2018, 08:06:29 pm »
Hi -- there is an Acoustic Neuroma group on Facebook that is very active and would be a good place to post your question.  If you're on Facebook, just search Acoustic Neuroma.  There is frequent talk of a Dr. Friedman in California who does consults without charge -- many have great things to say about him.

Best wishes!

johnwilliams

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Re: finally got treated with GK - my story (with 1 year update)
« Reply #14 on: November 03, 2018, 06:26:15 pm »
If it was about something I don't have, it would be a long post.
Because of the breath of investigation with doctors and your openness to a best solution, I read you post with interest and appreciation.
Thanks.

 


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