Facial problems

[Juliette]

Hi !
I havent been active on the forum for sometime ,but with the pregnancy I have been pretty busy. But lately some of my symptoms have been more and more persistant and I'am wondering if things are not getting worst?! My AN is 3cm by 3,2 cm an is touching the cortex. I got a call for surgery but since am pregnante they will wait until my boy is born. ( That was not the plan at first but for some reason they changed their minds, for the best I hope)

My facial numbness as been getting worts I can't even feel the inside of my mouth an half of my tongue. My right eye feels different and I have the impression of losing a bit of my sight.The on an off pains that comes and goes in my right ear  has been more persistant and frequente (going form once a day to 8 to 10 times a day). Is this a sign of some sort or is it a normal symtom crissis to go thru??
Am also having the impression of having some memory problems, more and more often. Some days I just feel drunk without even drinking! Is there any studys on the cognition problems and the AN?
 
Am getting a little worry, so is my husband.
the doctors or saying to wait and wait again, but most of them are not really informed on AN, (I more than most HIHIHI! )

thanks for reading.
Julie

[satman]

you might want to consult a different DR. if thats an option.
souds like you have quite a bit going on.
try not to stress out over it and see about another opinion.

[nancyann]

Hi Julie - I can't imagine what you are going through....     Are your obstetric & AN doctors conferring on this ??

[4cm in Pacific Northwest]

Salut Julie,


Although I think it is very good for you to research here on the forum remember none of us can give you medical advice. There are two of you involved with this situation and it is so important that you clearly bring all your concerns (and symptoms) up to your physicians.Your OBGYN, your PCP (aka GP) , your ophthalmologist and your ENT( or neurotologist) all need to be n the same page.

Start with a letter addressed to you AN surgeon explaining what you have to us, here in your post,  and clearly list your symptoms (and concerns) in your letter and C/C all your physicians involved. Clearly written letters will get you through the “Canadian waiting game healthcare systemâ€? much quicker…

(Oh I wish there was an answer to the healthcare problems – on both sides of the border. Both sides have healthcare coverage issues)


One globally recognized and reputable AN neurotologist there in your area is

Dr. Jamie Rappaport


http://www.ent.mcgill.ca/fellowships.htm

http://www.ent.mcgill.ca/staff.htm

SMBD Jewish General Hospital
Department of Otolaryngology, E-209
3755 Cote St. Catherine Road
Montreal, Que. H3T 1E2
Tel: (514) 340-8246
Fax: (514) 340-7581

I have sent you a more detailed e-mail through your in-box on this forum

Both you and your little one are in my thoughts and prayers.

4

[leapyrtwins]

Julie -

first of all congratulations on the baby boy!  How far along are you?

Second, as the others have suggested, you should make sure your OB and your AN doctor are both on the same page - if you haven't already done so.  If you and your husband have concerns, that's reason enough to get in touch with your physicians. 

Please keep us posted on your condition; we're thinking about you. 

Jan

[Sue]

Hi Julie,

Oooo, a bouncing baby boy!  Love the babies.

To answer one question, this is a link to a paper done on

COGNITIVE ASPECTS OF VESTIBULAR DISORDERS

http://www.backgroundfacts.com/menieres/COGDIS.htm

Maybe it will give you some answers to your questions.  I hope everything goes okay for you and your baby.

Regards,

Sue in Vancouver USA

[Jim Scott]

Hi, Julie;

Your symptoms sound as if they are becoming more pronounced, which usually indicates that the AN tumor is growing.  You need to be certain that by waiting for AN surgery, you are not endangering your health or that of your unborn child.  I'm obviously not a doctor but it seems prudent to advise you to consult yours, as soon as possible.  I would.

Jim 

[Dfcman]

I'm forced to agree with Jim.  The loss of vision thing kinda creeps me out...have u had a cat scan?

[TP]

Julie, how far along are you? Last thing you want to hear is to "stay calm" but at this point I would suggest you call your OB and your Neuro Dr, these guys need to talk. Please let us know what they recommend. 

[Juliette]

Hi guys, thanks for the replies.
Just knowing that am not alone helps alot.I know your not doctors but just being listened to by people who understand helps.
For the baby am 6 months today!! and he's starting to move alot!!

Since I last wrotte my doctor the ob called and she trying to reache the specialiste in montreal this week, but he's on vacation. she called me to say she will keep on trying. The info she last got was that for the baby it was better to wait after given birth to get the operation. And from what she told me I can not got into laber and this to prevent the growth of my AN. I since since then that they are finally checking oter options... lets hope.

I have a apointement in 2 weeks, she'll have rearch montreal then, I hope. And i'll ask again for another scan, but because am pregnant they can't do much testing plus I can't go for long car rides (montreal is 8 hours away). In my small town the hospital is sometimes to question, but I scence their trying their best. I know it's up to me to keep them going and to keep them in touch.

Thanks for your support!
 Julie 

[4cm in Pacific Northwest]

Julie,

I read your previous posts to see that your selected surgeon is Dr Isam Saliba at University of Montreal.

http://www.entcanada.org/category6.asp

I too know what is like to live a more remote area… miles away from good metropolitan hospitals where reputable specialists are (and a PCP that is in-the-know, or not, on AN tumors).

I also completely understand why your doctors want to wait until you little boy is born and their concerns with child labour.

I too was in the situation, last summer, with various specialists away on vacation and not reachable for me to talk to (very frustrating) … I moved on to find specialists who were. My situation was not as dire as yours is as I was not pregnant.

I feel that if Dr. Rapport was willing to look at the MRI of a confused Canadian residing in the USA, trying to seek help dwon here, – I am sure he will talk to a patient who is in his own province there -of Quebec.

I sent a copy of my MRI to Dr. Rappaport’s office and he and I conversed over the phone once he had seen my records. He gave me some solid and objective advice as to what I could do in my particular case and helped me to decide what surgical approaches I could take- examining the pros and cons of each. I found him to very personable and most helpful. After I listened to him I decided to not stay local, for my care, and go with a team I knew to be very reputable… and to go with a hospital that had been rated to give excellent care.

Dr. Rappaport does have an assistant who I am presuming is francophone (as she had a French Canadian accent when we spoke on the phone). If there is a language barrier – I am sure this could be resolved.

I will send you an e-mail, via the forum, with her name and contact #.

4

[lori67]

I've read some studies that say that pregnancy can make AN's grow faster than the usual slow rate, so it's quite possible all those hormones and increased blood volume can have something to do with that. I had my first symptoms of my AN during the last month of my pregnancy, which leads me to believe there is some truth to those studies.  At any rate, I agree with everyone else that you need to get all of your doctors involved in your care so you can all make the best decisions for you and your baby.  And congratulation too - not long now until you get to meet your new son!  How exciting.