Hysterical rambling

[Krystine]

I saw the ENT yesterday. He reviewed my ABR and ENG test and is more convinced than ever that I have an AN. He wants an MRI - won't accept open MRI which I could do with Valium blunting my anxiety and claustrophobia. If the insurance company approves, he will have me admitted to the hospital, given IV sedation, and stuck in the tube. To say that I am beyond anxious is an understatement. I woke up during foot surgery with IV sedation so am hopeful if the MRI is approved, they will give me a big dose and I will sleep.

In asking about AN treatments, he said he sends people to Wilcox at Jefferson Hospital in Philly. I have read at least 3 negative outcomes with Wilcox and have a gut feeling I do not want to do surgery if/when my AN is confirmed. So that brings me to blurt out my fear that my AN is too big for radiotherapy. I think I could do radiotherapy at Jefferson but apparently it is not done on big tumors because they swell after being radiated and could press on the brainstem (assuming my understanding is correct). As far as I could find out, the only one who thinks they can do that on big tumors is a doctor in NY but there is some info out there that his view on that is not accurate. The reason I think my AN is large is because I first lost hearing and developed tinittus over 20 years ago followed the next year by 3 months of dizziness. Sometimes I feel fortunate that I only had hearing loss all those years but other times I wish the problem had been found sooner.

In the last month, all my symptoms are much worse. Balance is way off, headache and face pain is unrelenting, feels like the right ear has been whacked by a baseball bat, all combined with blurred vision. Is it possible the AN just started to grow like Topsy in just a few weeks?

Wish I lived out west because endoscopic surgery such as that done at SBI looks good. But unfortunately I could not afford it.

Well, thanks for letting me vent. I have no RL support ... just husband and he has his own health issues to deal with.

[Shrnwldr]

I am not a real expert in this, but first off you need to take a deep breath. I am glad that you found this forum as there is plenty of understanding and support no matter. 
These people are the tops.  Again take a deep breath.  It is scary very scary.  i think (this is only my opinion)  though that an MRI will give you a more definitive answer regarding your tumor (size, location).  Others can give you better ideas etc than I but research research research.  Make sure that you are comfortable with your decision to move forward.  There are many outcomes... each individual and unique.   
Just remember we are all here to support you.  Sharon

[Battyp]

Krystine...please take a deep breath.  I am picking up on your anxiety in your type.  Understandable anxiety I assure you! Just because your ENT wants you to go someplace does not mean you have to go there.  You have the option to be proactive in your care.  If your symptoms are escalating it sounds to me you could be experiencing a growth spurt.  I went from mild tinnitus to walking into walls before I was diagnosed.  Take the time while you're waiting for your MRI to do some research and once you know your tumor size you'll be ready to make a treatment decision.  The booklets the ana offer are wonderful in helping to explain all your options, please request them from the main page.
Keep us posted!  We'll be your support while getting through all this.  You're not alone we're just a key stroke away!

Hugs, Michelle

[Betsy]

Krystine,

Michelle and Sharon are right, you're not alone.  Believe me, anxiety can play tricks on you.  Now and then I have to ask myself if I'm dizzy and nausous because of my AN or because I was up all night worrying about my AN.  There's just so much uncertainty a gal can take!

What helps me most is focusing on facts.  In your case, the one big fact is that you need to have a MRI to see if you have an AN and if you do, what size it is.  Can your primary care doctor, who is probably more familiar with your anxiety and claustrophobia, order an open MRI for you?  I doubt the films say "open MRI" on them, so your ENT may never know what machine you used.

Once you have the MRI behind you and have a diagnosis, things will be a little different.  I'm not saying your anxiety level will be less, but there's something to be said about knowing for sure.

This is not an easy road to be on, but we're right there with you.  Let us know, okay?

Betsy

[Jim Scott]

Hi, Krystine:

The title of your post intrigued me but my opionion is that you are not 'hysterical' at all, just a bit frightened.  That's a fairly normal reaction to an AN diagnosis.

I'm sorry you have to deal with this but we certainly can empathize with you.  The advice from Sharon and Michell to 'take a deep breath' is valid and I hope you heed it, as it will help you.  Panic won't.  Having the MRI scan is not optional, it's a necessity.  I'm sure you'll be sedated properly and be able to get through the process just fine.

As you know, the actual size of your AN will be apparent once you have the MRI scan performed.  If it's under 3 centimeters you may well be a candidate for radiation.  I hope it is.  Should you need surgery, the hospital and surgeon are YOUR choice - no one else's.  Don't allow any doctor to intimidate you into a situation that only makes you even more stressed and may not be in your best interests.  You'll find that having some knowledge of AN options- available right on this website - and taking control of your situation whenever possible, lessens the inevitable stress associated with making decisions regarding the treatment of your AN. 

Please know that we all wish you the very best and are here for you if and when you need us. 

Jim

[mema]

I know your upset and overwhelmed.  I was too. The thing that kept me somewhat positive was the fact that it wasn't cancer.  I felt I could deal with anything if it wasn't cancer.  I went to Jefferson seeking radiation.  Jeffersons recomendations were the same as MD anderson in Orlando, so I chose MD Anderson because it was closer to home for me.  Take a deep breath and get as much information about choices and Drs. that you can.  Again this forum is a wealth of information.                                                                           


                                                                                     mema