Post Gamma Knife Growth and increased symptoms is this normal?

[Brad1230]

Hello Everyone,

I have not been on for a while but am wondering if someone out there can provide some clarification on what will happen to my AN post Gamma Knife. I had Gamma Knife treatment in January of this year for my almost 2cm AN. I had an MRI last month and received the results a few days ago. My neurosurgeon gave me the results (he is not the same Dr. who did the treatment nor is he an expert on AN and he will admit that). He showed me the AN MRI slides from when I was diagnosed (just over 1 year ago) and from the most recent MRI. The AN showed growth, he said approx 2 mm. The picture also showed some dark spots in the middle of the tumor, which he said were spots where the tumor was dying.

Post Gamma Knife I felt great for about 2 months. Reduced symptoms such as less numbness, better hearing! and no more dizziness. The last 2 months have not been so good. My Tinnitus is like a constant roar in my ear, like i am trying to sleep after a super load concert, my hearing is getting worse and the fullness is even more noticeable.

I am scheduled for another MRI in 6 months. How long until I know that the treatment has worked?  What has everyone else experienced post Gamma Knife?

Thanks for your help with this........I am in a fairly remote community with not a lot of access to experts so any help with this is appreciated.

Brad

[mk]

Hi Brad,

the waiting game post-radiation is certainly tricky and frustrating. 2 mm is typically considered within the margin of error of the MRI scan. Additionally, swelling is not uncommon for up to 2 years post treatment, and could account for the symptoms that you described. Darkening is a good sign, but by itself is not a definitive indicator of treatment success. My AN did show darkening at 6 and 12 months post-GK, but unfortunately continued to grow.

Radiologists will typically compare scans to the previous ones, and may interpret slight changes in different ways. It is important to have the same person interpreting your MRI each time. Also, watch not so much the variations between subsequent scans, but for the long term trend. If the changes are within the margin of error, there should be some fluctuation. If there is consistent growth in the long term, then you must be ready to seek alternative treatment.
I suppose you are in Manitoba and obviously there aren't many specialists around. There are quite a few specialists in Canada, so if needed you do have options.

Good luck and I do hope that your treatment works.

Marianna

[JWW]

Brad,

Since I had my SRS, aka GK yesterday....I think from what I have read here, 2 years is a good watch & wait for growth. That is what I am going to do. I ask the radiation therapists yesterday, what could be done if my AN started to grow after two years since I did not want surgery.
They said, making a new mapping/plan and use LESS radiation to treat it again would be the protocol. Sounds good to me!!!

I feel GREAT!  8-}

JW

L. AN 1cm x 7mm x ? mild balance issues, mild dizziness, excellent hearing.

[Tisha]

Everyone's journey and AN is different, but I would guess within 2 years you will really know what is going on.  Remember, the goal is to stop growth, shrinkage is just a bonus to see.  Plus, don't forget that swelling may occur, and normally does.  My swelling didn't even reach it's max until 18-24 months post-CK, then the shrinage started somewhere between 2-3 years post-op.  It takes time and you may experience various symptoms along the way.  My major ones didn't even occur until about 18 months post-CK and here i was thinking I was one of the lucky ones that life just went on it's merry way!

I never get anxious when MRI time rolls around, just always look forward to seeing what happens to it!  Unfortunately, we have to be so patient waiting that 6 month - 1 year time period.

Good luck,

Tisha

[Tisha]

I just read your post again.  If your hearing is getting worse, I  would immediately contact your doctor, as you may need to go on some steriods.  The sooner the better.

tisha

[Brad1230]

Thanks everyone for setting my mind at ease. I will ask about the steroids (if I can get into see my doctor any time soon). MK, I am in Thunder Bay, so fairly remote.

One more question. I have been having some issure swallowing, i have a constant sore throught and at times find it really hard to swallow. I asked my neurosurgeon and he said the tumor is close to the swallowing nerve but should not be impacting it.

Have any of you heard of this symptom?

Thanks,

[mk]

Thunder Bay is remote indeed. Have you seen any Ontario doctors? I guess Winnipeg is closer and more convenient than Toronto.

It is not unusual for larger tumors to approach the swallowing nerve, but I think it is quite uncommon for smaller ANs like yours. My AN was touching the 9-10-11 nerve complex at the time when it was removed, but it was much larger than yours. Perhaps yours is located lower, towards the lower cranial nerves. If there is some swelling, then perhaps they are irritated, causing the side effects you mentioned. As Tisha mentioned, steroids might help with the swelling.

Marianna

[Vivian B.]

Hi Brad,

I just read your post. I had GK in Toronto. You mentioned that the Dr. that read your MRI is not an expert in ANs. You may want to ask a Dr. elsewhere to read the results for a second opinion. As Marianne said, there are a lot of good Doctors in Toronto. You might be able to send them the results to review if you cannot visit. I can provide you with some names if you like. The AN process is long and I must say somewhat strange as it does affect all the facial nerves and symptoms seem to be sporadic. You are up one day and down the next. I find that in stressful situations, the symptoms get worse. However, as long as the tumor does not grow, the treatment is working. If you are concerned about swelling and requiring steroids I would definitely discuss it with your attending physician as soon as you can.

Vivian

[mindyandy]

Brad
2mm is within margin or error. If you sent your scans for someone else to read you would get different results. I would recommend you send your scans to Dr. Medberry  http://patientforum.therss.org/ or email buddy@swrads.org
 This is the website where you can contact him. He is wonderful.

Mindy