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Author Topic: 6 month MRI after GK  (Read 12470 times)

cathyroe

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6 month MRI after GK
« on: February 16, 2015, 12:18:28 pm »
A bit (well, more than a bit) disappointed that my 6 month post GK MRI showed growth from 14 mm x 8mm in July to 16 mm x 8 mm.
Oh shucks. I was SO hoping for shrinkage and necrosis. Is it just too soon?
How many of you are in the same boat with growth after the 6 month MRI? And if so, did it shrink by the one year MRI?
I just sent the disk to Dr. Lunsford and am hoping he has words of encouragement.
Until then, I will look to you, my forum friends, for uplifting advice and any words of hope and wisdom.
Cathy
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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

Susan59

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Re: 6 month MRI after GK
« Reply #1 on: February 16, 2015, 12:46:08 pm »
Cathy, this is very common at the 6 month MRI.  From what I have read, one should probably expect the swelling. It is all part of the GK process which can take 2-3 yrs. Dr. Lunsford is the best in his field!  I am sure he will explain this, far better than I, when he replies to you.   :)
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john1455

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Re: 6 month MRI after GK
« Reply #2 on: February 18, 2015, 02:23:11 am »
Susan is correct. Swelling is totally normal 6 months after radiosurgery (CK or GK) because that is the normal reaction of a tumor to radiation. Dr Chang at Stanford says it may take up to 3 years to see any shrinkage of an AN. You just need to keep in mind that postop swelling is to be expected (especially at 6 months) and does NOT mean the tumor is growing pathologically. There is a big difference between increase tumor size due to swelling as a result of radiation (normal) and increase in size due to growth (not good).
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Diagnosed with 19x16x19mm cystic AN right side on 7/2013
MRI on 3/2014 showed AN increased to 21x20mm
right side 70% hearing loss, tinnitus, balance issues
CK at Stanford completed 3/21/2014 (3 sessions)
Dr Steven Chang and Dr Iris Gibbs

SueLL

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Re: 6 month MRI after GK
« Reply #3 on: February 18, 2015, 09:34:01 am »
Cathy - My recent 6 month MRI showed my AN at 15 x 12 x 14 mm as compared to 13 x 11 x 13 mm in July.  (Although an earlier MRI was read at 13 x 12 x 13 mm, so I'm wondering about the precision of MRI results in general.)  Dr. Lunsford called this "stable" and noted a "loss of central contrast within the tumor that helps to predict future shrinkage."  If you are in the mood to review some of Dr. L's research on post-GK results, I found a paper on the topic at http://www.ajnr.org/content/12/6/1165.full.pdf that talks about some of these issues, although the results are not as promising as others I had heard. 

When I was at UPMC, Dr. L did mention the possibility of swelling before necrosis - let's hope that is what is happening in both our cases!
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Diagnosed with 1.3 x 1.2 x 1.3 mm right side AN – September 2013; Gamma Knife at UPMC July 2014; Retrosigmoid surgery at Tufts Medical Center June 2018 to remove 2.0 x 1.8 mm tumor

PaulW

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Re: 6 month MRI after GK
« Reply #4 on: February 23, 2015, 01:42:19 am »
Please keep in mind that whether necrosis is visible or not, it has no bearing on the long term outcome.
Smaller slow growing tumours often show less or no necrosis, While the bigger faster growing ones do...

Necrosis makes us feel good..... but that's all it does..
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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!

PaulW

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Re: 6 month MRI after GK
« Reply #5 on: February 23, 2015, 01:50:27 am »
Quote from: SueLL on February 18, 2015, 09:34:01 am
Cathy - My recent 6 month MRI showed my AN at 15 x 12 x 14 mm as compared to 13 x 11 x 13 mm in July.  (Although an earlier MRI was read at 13 x 12 x 13 mm, so I'm wondering about the precision of MRI results in general.)  Dr. Lunsford called this "stable" and noted a "loss of central contrast within the tumor that helps to predict future shrinkage."  If you are in the mood to review some of Dr. L's research on post-GK results, I found a paper on the topic at http://www.ajnr.org/content/12/6/1165.full.pdf that talks about some of these issues, although the results are not as promising as others I had heard. 

When I was at UPMC, Dr. L did mention the possibility of swelling before necrosis - let's hope that is what is happening in both our cases!

Hi Sue,
That Paper is really old 1991..... things have moved a long way since then.... They are treating with 12-13Gy instead of 20Gy, Still using CT Scans for dose planning....
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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!

SueLL

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Re: 6 month MRI after GK
« Reply #6 on: February 23, 2015, 01:14:15 pm »
Yes, I agree; but that paper did have some references to the "loss of central contrast" that I was not familiar with.
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Diagnosed with 1.3 x 1.2 x 1.3 mm right side AN – September 2013; Gamma Knife at UPMC July 2014; Retrosigmoid surgery at Tufts Medical Center June 2018 to remove 2.0 x 1.8 mm tumor

PaulW

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Re: 6 month MRI after GK
« Reply #7 on: February 23, 2015, 03:14:38 pm »
Cathy.. My tumour swelled at 6 months and has never shown necrosis in the middle... It's very common especially with smaller tumours
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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!

rupert

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Re: 6 month MRI after GK
« Reply #8 on: February 23, 2015, 04:32:40 pm »
I think people just expect too much too soon out of GK.  There is nothing substantial that can be seen at the 6 month MRI, or even at the 1 year MRI.   I see you were treated at UPMC.  I know they sent me a packet and CD to watch before the treatment explaining the length of time for the GK to work.  Typically,  6-9 years to see the full effects of the radiation.  Of course the natural reaction of swelling is disappointment but,  think of it as that the tumor is now bruised.  It can no longer regulate its water inside the cells and it can swell,   Just like any other bruise  can swell up.  As it starts to die (over years) it can even change shapes as it collapses in on itself.  I know it's a hard thing to deal with but, time is what kills the tumor with the GK treatment and I'm starting to see a trend that people are expecting unrealistic results at 6 months and that is just not the reality of the treatment.  Statistics are on your side that this will be an effective treatment.
« Last Edit: February 23, 2015, 04:34:56 pm by rupert »
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Bonnie B.

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Re: 6 month MRI after GK
« Reply #9 on: March 13, 2015, 11:30:48 am »
I so agree about the swelling after 6 mo. post GK.  I too had some swelling after 6 months.   My one year post GK show some shrinkage.  My 2 yr. Mri showed no growth and I just had my three year MRI post GK and it showed no growth again.  I am very happy with that.  I know for me, I made the right decision to have GK.
Good luck :)
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1.7 cm AN
diagnosed January, 2012 - no hearing L ear
GK surgery done March 15, 2012 at Yale New Haven Hospital, New Haven, Ct.
Dr. Chiang and Dr. Yu

cathyroe

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Re: 6 month MRI after GK
« Reply #10 on: March 30, 2015, 04:12:48 pm »
Well my AN friends, now I am EIGHT MONTHS post GK.
Just reporting.....
It really isn't much different than before GK, except for the lack of stress that comes with trying to make a decision. I made it. GK. One shot deal. Of course, it does give me comfort and confidence that my GK was performed by the famous Dr. Lunsford at UPMC. I believe in that place, I believe in him.
Want to hear a funny story?
As you all know, they give you a big old dose of "happy juice" because of the head frame. It makes a person downright dingy.
After the "proceedure" is finished they want you to eat something. Now, you must remember that I am a professional dancer, fitness enthusiast and NEVER eat junk food. My nurse says I have to eat something before leaving and offers me either jello or chocolate ice cream. CHOCOLATE ICE CREAM?????   I haven't had it in years and here is by big chance! I order the ice cream, and what do I get? This crappy little plastic cup of I-don't-know-what.... chocolate frozen coffeemate? Chocolate frozen chemicals? I'm so sorely disappointed and I say to my poor nurse (in a drug induced state) "you call this CHOCOLATE ICE CREAM???? BLACHHHH!".
So we wrap it up and it's time to leave, the wheel chair comes and I say I can walk just fine. Never mind the wheel chair! (Mind you, I'm still high as a kite). I leave the little cubby and see Dr. L down the hall, and I say to my nurse.... "could you please tell Dr. L that I LOVE HIM and thank him for saving my life?" The nurse smiles and says "sure, "I'll tell him".
Now I am 8 months post GK and still have the same old same old. Tinnitus. Hearing loss. But you know what I don't have? Fear. I totally trust the Dr. L and the GK team saved my life and killed the little bugger. It's not dead yet, of course, (swelling) but I do believe I will be fine. I will learn to live with the tinnitus. I will probably end up with SSD but who knows, there are new break throughs every day.
To those of you considering GK, I will tell you that I think it was totally right for me. 61 years old. Work out everyday. Love music and hope like mad I can hear until the end.
Peace of mind is the greatest of gifts. Maybe even better than hearing out of both ears. Maybe.....
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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

Glupson

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Re: 6 month MRI after GK
« Reply #11 on: April 09, 2015, 06:25:36 am »
Hello Cathy

I am a newbie here  ;D and a newly (decision taken this morning) future GK patient.

As I can see, you had your first post-GK mri. When is the next one?

Hope that it will bring you some good news  :)
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cathyroe

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Re: 6 month MRI after GK
« Reply #12 on: April 24, 2015, 04:53:32 am »
Hi Glupson, my next MRI would have been in July, but Dr. L looked at my last one and told me to wait until November or December. He seems quite optimistic about my case disputed the swelling. I must tell you, I feel GREAT compared to before GK. It was a really good choice for me. I don't even think about my AN anymore. I have reduced tinnitus and loss of hearing, but the other symptoms are gone. No more facial twitch , numb feeling ( which I may have been imagining) and the "pressure " feeling is way better. Almost gone. Good luck!
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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

SueLL

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Re: 6 month MRI after GK
« Reply #13 on: May 07, 2015, 07:40:24 pm »
Hi Glupson - How large is your AN?  What are your symptoms?

I had GK at UPMC the same day that Cathy did, and I have the opposite opinion.  I regret having done GK.  My tumor is/was medium-sized, but I had no symptoms beyond slight hearing concerns and the stress of having an AN.  Within 6 months of GK I have almost total hearing loss in the right ear.  In retrospect, I wish I had waited a bit.
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Diagnosed with 1.3 x 1.2 x 1.3 mm right side AN – September 2013; Gamma Knife at UPMC July 2014; Retrosigmoid surgery at Tufts Medical Center June 2018 to remove 2.0 x 1.8 mm tumor

Glupson

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Re: 6 month MRI after GK
« Reply #14 on: May 08, 2015, 02:59:24 am »
Hi SueLL,

I have a trigeminal schwanomma, not an AN; 19 mm
My symptoms are the light tingles on one side of the face, the mouth and the tongue.
I had my GK two weeks ago, and I feel quite good; the symptoms are still there, but not worse than before (it is even better, I would say); some headaches too. But I do fine with a simple ibuprofen pill.

I am sorry to hear that you have a hearing loss. Maybe it is temporary?

If you had waited, there would be a risk of AN growing, which would have induced the hearing loss anyway?

Hope that you will have some encouraging comments from other AN people here  :)
« Last Edit: May 08, 2015, 03:01:30 am by Glupson »
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