Author Topic: Bleeding from a radiated AN  (Read 2959 times)

Ned

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Bleeding from a radiated AN
« on: March 16, 2012, 05:15:55 pm »
Had an MRI today to try and determine the return of some severe balance problems.  After the MRI, I knew the Radiologist and asked him to review the scans.  I had the scans in an open MRI.  He was concerned and wanted to do an enclosed scan and I agreed.  His summary was it looks like my AN was bleeding and he couldn't explain and said wait and talk with my ENT.  I have never come across this in any of the materials I have reviewed.  In addition, he said it appeared there appeared to be some fatty tissue in the tumor based on how the contrast appeared.  Trying to process this information and my mind isn't functioning efficiently.
Perhaps the Screwdriver will help.
2003   1.5cmX1,6cmx1.3cm
FSR Sara Cannon Cancer Center  Nashville
2006  1.1 cmX1.2cmX .9cm

Jim Scott

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Re: Bleeding from a radiated AN
« Reply #1 on: March 17, 2012, 02:00:26 pm »
Ned ~

I'm sorry to learn of your balance problem and apparent bleeding from your irradiated AN.  I'm curious to find out more about this situation because, as you noted, a bleeding, irradiated AN is exceedingly rare, if not unheard of and something I've never encountered in all my research and many years perusing the ANA discussion forums.  Admittedly, I have a heightened interest in this situation because I also underwent FSR (in 2006).  However, that was on a large (4.5 cm) AN that had been surgically 'de-bulked' and it's blood supply severed.   

Please try to update us when you've seen the ENT.  Thanks.

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

Ned

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Re: Bleeding from a radiated AN
« Reply #2 on: March 17, 2012, 03:28:01 pm »
Thanks Jim, it is baffling.  I have never seen anything as well.  Of course me and my family are reeling from this information.  I really don't believe his summation of the scans, but he is the group's Neurology Radiologist.  I'm interested in what the ENT tells me, I am not going to reveal my conversation initially with the Radiologist, until he reads me the report.  What if he disagrees with the scan interpretation?  Who would you send the scan to, to give an interpretation? I am trying to only think about this occasionally, trying not to paint the worse case scenario, but I am.
2003   1.5cmX1,6cmx1.3cm
FSR Sara Cannon Cancer Center  Nashville
2006  1.1 cmX1.2cmX .9cm

Jim Scott

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Re: Bleeding from a radiated AN
« Reply #3 on: March 17, 2012, 04:07:42 pm »
Thanks Jim, it is baffling.  I have never seen anything as well.  Of course me and my family are reeling from this information.  I really don't believe his summation of the scans, but he is the group's Neurology Radiologist.  I'm interested in what the ENT tells me, I am not going to reveal my conversation initially with the Radiologist, until he reads me the report.  What if he disagrees with the scan interpretation?  Who would you send the scan to, to give an interpretation? I am trying to only think about this occasionally, trying not to paint the worse case scenario, but I am.

Ned ~

I would send the MRI scan to HEI in Los Angeles.  They are experts and I believe you can trust their doctors opinion.

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

Ned

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Re: Bleeding from a radiated AN
« Reply #4 on: March 19, 2012, 04:53:39 pm »
As Robert Earl Keen wrote, "The Road Goes on Forever and the Party Never Ends".
OK, I spend the weekend with my family totally freaked out about the possibility of my tumor bleeding.  Started the day with my wife having to drive me to an important business meeting at 8 across town.  After a great meeting, we decide to go to the Radiology office and request my scans and the summary report.  I read the report and nothing was mentioned regarding the "fatty cells and the bleeding".  The report was by a a different doctor than the one I spoke with.  Apparently as soon as I completed the MRI in the open machine, the other doctor pulled it up and did the report at 3:52.  I then had the second MRI in the enclosed MRI at 4:30 and that was the scan that showed something suspicious and it wasn't  reported and the Doc that read the second MRI is on vacation.  After they were informed of my concern, the doctor that read the first MRI called me and said he writing an addendum to the first report.  He did see that there might have been some bleeding from the tumor but it was minor and don't worry.  My ENT's nurse called and said they read the report and everything was cool.  I tried to explain what happened and they weren't reading the right report.  She was so damn dismissive to me and totally disregarded what I explained.  I don't know what to think, the good news, they said the tumor has shrunk almost 50% from its original size, but do I believe this or not?
2003   1.5cmX1,6cmx1.3cm
FSR Sara Cannon Cancer Center  Nashville
2006  1.1 cmX1.2cmX .9cm

Mei Mei

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Re: Bleeding from a radiated AN
« Reply #5 on: March 19, 2012, 05:01:29 pm »
Take your MRIs and move on as Jim said.     Send them to House Ear Institute.    The radiologist there I would depend on to be thoroughly well versed in ANs.     Do this first thing in the morning to put your mind at ease.   The contact person I had there was Dr. Rick Friedman.   If you want his email address, PM me and I will send it to you.   Remember you have to be surrounded with people that are listening to you.
Mei Mei
1 cm Tumor RetrosigmoidSurgery on Jan 12 at Johns Hopkins
Drs. Niparko and Tamargo
35dB loss pre surgery and now SSD
Post surgical Headaches and Tinnitus
Dr Ducic Georgetown Excision Surgery May 2011
Dr. Schwartz GW  Titanium Mesh  March 2012
Drs Kalhorn/Baker, Georgetown Removal of Titanium Mesh

JLR

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Re: Bleeding from a radiated AN
« Reply #6 on: March 20, 2012, 05:23:13 am »
Good Morning Ned, It seems there is a bit of confusion on the part of the radiologists. Two MRI's Two reports its one of those "whose on first"moments...Here's what I would do...get another MRI. Preferably at another MRI Center. Bring your previous MRI ( not the new ones) so they can compare. Good Luck, Stay Well, Joan