First year MRI done at 9 months - good news

[chloes mema]

Saw my oncologist this morning who looked at my MRI (with contrast) from last week.  MRI shows that the tumor has a dark spot in the center which means necrosis has started.  YEA!!!!     (When I "peeked" at the pictures on the CD last week, I pointed this out to my husband and told him necrosis had started.  He poo-pood me but with my vast knowledge gleaned from the forum I knew what I was looking at)

He did prescribe a 30 day supply of 5 mg Valium for my hemifacial spasms after I told him that when I took a 10mg Valium last week for the MRI I did not have a spasm for 12 hours.  His reply was that Valium was very old school.  I should have told him, I'm just an old fashion girl.   

Anyway, scheduled to see the oncologist again in two months, I presume to follow the spasms not the AN.

Karen

[Jim Scott]

Karen ~

Congratulations on the splendid MRI report.  Necrosis!  One of my new favorite words.  Here's hoping the spasms will soon be under control.

Jim

[chloes mema]

Thanks, Jim

Yes, never thought I'd be happy to see a "hole" in a spot in my brain but was ecstatic! 

One thing I found out strictly by accident is that I was taking the Gabapentin right after breakfast & thought the drug was making the spasms worse.  Last Friday I took the drug right after getting up & could tell the difference, spasms were less & not so strong.  So now I'm taking the drug on an empty stomach.   

Karen

[arizonajack]

I found this set of images online that show the progression of the AN for a 36 month period after radiation.

http://ars.els-cdn.com/content/image/1-s2.0-S0360301612004336-gr3.jpg

And here's one for 6 months.

http://www.gkcairo.com/wpimages/wp180f6b80_06.jpg

I had my GK last month and I'm looking forward to necrosis in July when I have my next MRI.

[jsanders1379]

Those are very encouraging photos-thanks for posting...

[chloes mema]

Very interesting views, thank you for posting.

Don't you need an MRI WITH contrast to show the necrosis? 

My neurotologist & I are having an on going battle regarding me having follow up MRIs with contrast.  He insist on NOT ordering with contrast.  So for this MRI I went around him to my oncologist & got the script from him with contrast.   

Can you change doctors at this point in the game, do people ever change doctors at this point?

Karen

[dtorres135]

well, I just scheduled my GK with Dr. Kondolskika for June 25th at South Nassau Hospital.  I will start posting my journey before during and after.  I have asked them first to check my insurance to ensure all and I mean all is in order.  any advice?

[chloes mema]

Keep on top of your insurance all the way through the process even if someone says yes it's all fine.  I keep a spreadsheet on all my billings, insurance payments, supplemental payments, and out of pocket.  So far I've been very blessed that there has been no out of pocket for any of my AN related expenses. 

I remember MDemsey had issues with his insurance even after asking the same questions you did & probably other forum members have too.

The one thing I've run into is changing supplemental insurances the new supplement states it won't pay for preexisting medical issues for the first three months.  That was a huge surprise but my agent keeps reassuring me that I've been "grandfathered" in so there should (operative word) be no problems.  I'm glad I moved my 12 month MRI up to be a 9 month MRI.

Anyway, good luck, keep on top of the people handling your insurance & billing.

Karen

[dtorres135]

what is hemifacial spasms?  is that a possible side affect for gK

[grammyslim]

Pretty sure you can get it either way surgery or GK.  Hemifacial spasms occur when thee swelling of the AN hits the facial nerve.  Doesn't happen to everyone just us lucky few (LlOL).

[arizonajack]

The one thing I've run into is changing supplemental insurances the new supplement states it won't pay for preexisting medical issues for the first three months.  That was a huge surprise but my agent keeps reassuring me that I've been "grandfathered" in so there should (operative word) be no problems. 

NEVER rely on anything an insurance agent tells you.

ALWAYS read the policy and verify it.

Where the pre-existing condition limitation is there should also be a provision waiving the limitation if you've met certain requirements.

Find it.

[chloes mema]

Policy says if you've been treated for something in the 3 months before your policy goes into effect they won't pay for related services for the first 3 months after your policy goes into effect.

I think I'll be ok since I moved the "expensive appointments" up to happen in February.   

Karen

[PaulW]

Just some words on necrosis.
Some people can be a little disheartened when they see their 6 month or 12 month MRI and the tumour has grown and there are no changes to the enhancement.
Thoughts of OMG its bigger and it doesn't look like its dying, will I be one of the radiation failures?

The most important MRI's are the 2 year and 3 year. If the tumour is shrinking or stable between these two MRI's its good.
While necrosis is encouraging for us to see, it actually has no bearing whatsoever on the long term success of the treatment
Tumours that show early necrosis are just as likely to regrow as ones that show no necrosis whatsoever

So if you are one of the many that sees a bigger tumour with no necrosis at 12m or even 24 months DONT PANIC.
Its very common and pretty normal, breath be calm and wait for the 36 month scan, before jumping to any conclusions.

For those second guessing their treatment decision, I found this recent paper on regrowth after microsurgery
http://www.ncbi.nlm.nih.gov/pubmed/23370559.
The practice of keeping a small fragment to preserve the facial nerve is now very common.

 

[arizonajack]

Policy says if you've been treated for something in the 3 months before your policy goes into effect they won't pay for related services for the first 3 months after your policy goes into effect.

I think I'll be ok since I moved the "expensive appointments" up to happen in February.   

Karen

Sometimes a replacement policy (especially with employer sponsored insurance) will cover the pre-existing conditions if you had the same coverage on the previous policy.

That's what I was referring to and sometimes it's a little hard to find in the policy.