possible reoccurence after 5 yrs

[dpetty]

Hello all,

  I used to follow this forum closely when I was dealing with all the issues surrounding my first AN (12mm) but I got better and stronger and pretty much was over most of the AN related side effects other than total lost of my hearing on my left side. But about 6 months ago my sinus problems have really increased, then about a month ago nose bleeds and headaches returned, not real bad like before but enough to get back with my doctor for an MRI which I did yesterday so now it's a wait and see.

David

[Derek]

Hi David...

Five years since your AN treatment without any problems certainly appeared to be a  good sign that everything was going well. Hopefully your present symptoms are not AN related and will be something minor that can be easily sorted out. I just wondered if your initial AN treatment was microsurgery or radiosurgery?

Best of luck with your iminent MRI scan results.

Regards

Derek

[dpetty]

Well we can only hope, my AN was what was termed aggressive in nature as it grew from 2mm to 12mm in about 60 days as it tapped into a major artery. Anyway now the waiting begins and hopefully its nothing.

David

[Raydean]

Hi Dave

Just a note to say we're thinking of you and understand.  This far out of treatment it's really weird to be considering all of the what ifs, and the waiting is just as, if not more difficult then the first time around.  If it helps any we're currently in the same boat as you with my husband.  Unsure what the problem is for sure, tho I know it'll be related to the AN or shunt.  (in my expert, but non doctor opinion <g> ) 

For those reading this post  please have your MRI's as recommended by your doctor.  If he/she hasn't discussed follow up MRI's be sure and talk to them about this.  Chet had his last MRI about 5 years ago, and was within the timeframe of his next one.  (Doctor said 3 to 5 years from the last one).  We had talked about this being the last one if everything was ok, but this shows the need for continued MRI's

Dave, you'll be in my thoughts and prayers.  Here's hoping for some good news for you!!!

Hugs
Raydean


 

[dpetty]

Raydean,

   Thank you for your prayers, might be nothing but then again the first one darn nearly killed me. Anyway just waiting now and hope to hear something in the next day or two.

David

[Kathleen_Mc]

David: I understand this is certainly a nerve racking time, waiting sucks. Hopefully the problem is something simple.
Kathleen

[kat]

Hi David

I will keep my fingers crossed hoping that the MRI results will be with you soon with a good outcome .

Best regards Kat

[Battyp]

David may it be nothing at all! 

Raydean how often in the beginning did chet have his mri's?  I have been told I'll need them for the rest of my life which I can accept...but I have been getting one every 6 mos I'd like to think I'll reach the every year stage eventurally then maybe every 5 years....just wondered if anyone know if there was a protocol or just dr opinion?

[Raydean]

Hi Michelle,

Chet had is first set 2 1/2 months post treatment at my request.  4 months after that he had residual tumor surgery.  If i remember right, he had one  (MRI) a year after that surgery, which was good, another 3 years later which was good and told to have another in 3 to 5 years.  5 years would be the time span we're at now.  I think the protocol varies with Doctor's and may vary with each patient depending on the situation.  Known residual tumor would require closer watch then a situation  where it's fairly certain that the tumor was removed.  In Chet's case the treating Doctor was confident that he was able to get all of the tumor.  His current situation may be related hardware, and not tumor, which is why the neurosurgeon was brought into the picture.
It's making for a long week.   I'll be glad for Thursday.  Till then keeping a close eye and keeping things quiet.

Hugs
raydean

[pearchica]

Hey David: waiting is the worst- please know that we are thinking of you and let us know the outcome- take care, Annie

[dpetty]

Well I have an appointment to see my ENT,Dr. Dornhoffer at UAMS Little Rock on March 5th, which is the soonest he could see me, my GP got the results of my MRI yesterday and is going to let me know in a day or so, sweating it out now but speaking to his nurse she didn't sound positive to me so I suspect the worst.
David

[Jwh]

Hi David,

I'm in the same boat as you.  I'm 5 1/2 years post op and have recently started having symptoms.  I'm also 6 weeks post partum which scares me since they say AN's can grow faster while you're pregnant.  In my last 2 MRI's the Dr.'s said I had scar tissue.  I'm hoping they were right and it's not a regrowth!! My gut and symptoms are all pointing towards a regrowth.  I hope not!!!!

Hope all goes well with your results.

Jen

[Battyp]

Jen and David...here's wishing you NO REGROWTH!

David did you get your results from your GP yet?

[Obita]

Hi David & Jen:

Darn it, I don't like posts like these.  Freaks me out as I could be next in the returning symptoms department.

I do hope all goes fine for you both and please keep us posted.

David: 

I feel bad for you that they are leaving you hanging like that.  You could ask them to fax you the radiology report??

Hang in there, Kathy

[Jwh]

Kathy and battyprincess thank you for responding.  I go next Wednesday for my MRI.  Keeping everything crossed!!

Jen