Author Topic: More and more symptoms  (Read 4008 times)

Juliette

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More and more symptoms
« on: July 31, 2007, 06:08:38 pm »
Hi
am 28 years old and i have a pretty big AN. 3,2 cm by 3 cm. And lately my face numbness has been getting worse, I can't even feel the inside of my cheek and some spasmes have appeard from time to time. I keep wondering is the tumor is getting bigger. I live in quebec Canada and not much info or help or available. The docteors said i have to be operated has soon has possible. Am still waiting for them to call. Plus they dont show much undertsanding of the AN condition.

Am also woride of the after affects,  having read that some people had to change completely their lives after the operation not being able to continue has before(work, activities...) worst I am now pregnante and the doctors dont really know what effect it will have on the tumor.

I can cope with the being deaf situation and the numbness but the not being listned to make's me feel like a nother number waiting for surgery.

Julie
31 years old
3,2cm x 3 cm AN diagnose in march 2007
translab surgery on 0ctober 17, 2008 in CHUM à montreal
with BAHA

linnilue

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Re: More and more symptoms
« Reply #1 on: July 31, 2007, 06:19:35 pm »
Juliette,  Where do you live in Quebec?  Are you near Montreal? 
Left AN dx. 11/05 Linac radiosurgery 01/06 Burlington, VT for a 9mm x 5mm tumor.  No necrosis yet (2 yrs. post-op).  Multiple post radiosurgery complications, some permanent.  Have radio-oncologist here.  Now see Dr. McKenna, Mass. Eye & Ear Instit., Boston for flollow-up care as my main An doctor.

satman

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Re: More and more symptoms
« Reply #2 on: July 31, 2007, 06:33:10 pm »
hi julie,try not to worry about the things that you cannot change.[i.e. outcome]
stay and think positive,you have a little one coming.
also,my got instinct tells me you will be just fine.
research some more doctors that you can get to.
kicked my little 8cm buddy to the curb-c ya !

Betsy

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Re: More and more symptoms
« Reply #3 on: July 31, 2007, 08:19:34 pm »
Hi Julie and welcome to the forum.  Please, please question your doctors about their experience in treating ANs, and if they don't know what they're doing, find another doctor.  Not to scare you more than you are already, but surgery should be done right the first time.  AN surgery is tricky, and the more experienced the surgeon is the better.  Read all you can...the more informed you are, the better.

Putting ANs aside for a moment....congratulations on your pregnancy!  When are you due?

Please write again and let us know how you're doing.

Betsy
15mm left side AN, diagnosed 4/25/07, radiosurgery via Trilogy 8/22/07.  Necrosis & shrinkage to 12.8mm April 2009

Samantha n Adrian

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Re: More and more symptoms
« Reply #4 on: July 31, 2007, 09:33:59 pm »
Hi Julie.

So sorry to hear of your current situation. I have read a couple of places where they do believe that the hormone levels during pregnancy can be the cause of the AN growing faster but there has not been enough research done to state this as a fact.

Like Betsy said, PLEASE do ask your Doctors many questions and if you do not feel comfortable with their answers seek a 2nd and 3rd opinion. Adrian and I understand your feeling of urgency. He has a 4cm AN and has many symptoms that are progressively getting worse, but we understand that this decision will affect the rest of our lives. It is an important one. Please choose wisely.

I found some information that may be helpful: http://www.springerlink.com/content/m57nru074v101mn7/fulltext.pdf

Keep your head up and stay positive. What a joy to have a baby!  ;D Is this your 1st child?

Please keep us updated to what you decide... we are here for you.  :)

Sam~
Age 35/ 4cm AN right side, Transpetrosal aproach, 9/6/07
Dr. Loren Bartels - Otolaryngology & partner Dr. Christopher Danner
Dr. Harry van Loveren - Neurosurgeon & partner Dr. Levine
Dr. David Samuels - Anesthesiologist
Tampa General Hopital, Tampa FL
These guys re-assembled Humpty Dumpty!

sgerrard

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Re: More and more symptoms
« Reply #5 on: July 31, 2007, 11:39:00 pm »
Hi Julie, I hope you will stay in this forum for a while, there are many here who can give you support and help.

I was glad to see the article Sam found for you, it sounds like you might be able to have the baby first and then the surgery. You will find many posts here showing that symptoms can come and go, they don't necessarily mean the AN is growing. Even just stress and worry can make the symptoms flare up.

I hope you can go to Montreal, McGill U. has some clinics, or maybe your own OB doctor can support you and help you find another doctor for a 2nd opinion. You are at least entitled to a doctor who will listen to you.

Best wishes, Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

tatianne

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Re: More and more symptoms
« Reply #6 on: August 01, 2007, 05:10:49 am »
Hi Juliette,
In from quebec as well, Montreal to be exact.
 First, Congratulations on your baby !
Im really sorry to read that your going through such a difficult time, however I can tell you that on this forum you will find a lot of wonderful compassionate people who will do their best to give you accurate info.
Which city are you in and who is your doctor ??? I have the same problem with difficulties finding a information in our area, however I have a really good Neurotologist who actually spent several years at harvard working on studies about ANs and NF2, I was told hes the best in the area. Hes also compassionate, kind and very easy to talk to. Dr. Rappaport whos affiliated with the JGH...
I know that from all the experiences Ive read about AN symptoms can come, go and change quickly..i dont think it really means the thing is growing but its all about the position its in and the nerves its pressing on. When do you see your doctor next ??
You will be fine, this I know.
Please PM me if you want to talk, Im here for you
Tatianne
« Last Edit: August 01, 2007, 06:15:10 am by tatianne »
Waith and Watcher
July 2006 8mm
Jan 2007 9.5 mm
Jan 2009 1.4 cmm x 5mm
GK surgery completed on May 4, 2009 in Sherbrook Quebec, hoping and praying this will be the beginning of the end of my AN......

krbonner

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Re: More and more symptoms
« Reply #7 on: August 01, 2007, 09:27:04 am »
Julie,

Congratulations on the baby!  Is this your first?  How far along are you?

My AN became symptomatic halfway through my second pregnancy.  I woke up one morning feeling like I had an ear infection - fullness, ringing, loss of hearing, etc.  I also quickly developed balance issues.  Everyone chalked up the balance issues to general pregnancy stuff.  I wasn't diagnosed until my son was 3 months old, since no one wanted to do anything to me while I was pregnant.  I will say, all my balance issues went away as soon as I gave birth (though the AN didn't, obviously).  There was probably extra pressure on the nerves from the general swelling I was getting just from being pregnant.

There is evidence that estrogen will make an existing AN grow faster.  Mine certainly grew much faster than the "averages".  That may mean you need to keep a closer eye on it than some others do.

The key is getting a doctor with lots of experience dealing with ANs.  I don't know how to handle that within the Canadian health system, but hopefully others will have some ideas for you.  And I know surgery is scary.  I was terrified before mine (my sons were 4 and 1.5 years at the time).  But having surgery does not necessarily doom you to life altering outcomes.  I had surgery almost 11 months ago, and by 6 weeks out I was taking care of my kids by myself again.  I by 3 months I felt pretty much back to normal.  A lot of people have treatment and then move on in their lives, and find they don't have time to be on the forum anymore.  So you don't always know how many are out there!  :-)

Good luck with everything.  Please stick around and ask questions.  This is a wonderful group.

Katie
diagnosed June 2005
2.3cmx1.6cmx1.4cm left AN
translab Sept 13, 2006; Drs. McKenna and Barker in MA (MEEI/MGH)

Juliette

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Re: More and more symptoms
« Reply #8 on: August 01, 2007, 06:25:38 pm »
Hi
Thanks for all your support .

I am 3 months pregnante and the baby is doing well.  this is our first child and we have been waiting 5 years for this moment to happen.

For the doctors and the clinique i live in a small town in the north call Rouyn-Noranda. I will go to Montreal for the surgery the doctors name is Isam saliba and I was told that he does this type of surgery often and that the succes rates are prety good. He's been doing this for more than 8 years. He was actually pretty nice whit me and my husband and semmed concerned about the pregnancy. Her in Quebec our entire helth system is held by the goverment. So it's hard to get out of the system and seak elsewere.
The reason for such a short notice on sugery is that my brainstem and that the part of my brain that copes with balance was completely destroyded on the right side, they said that the tumor is really really badly placed.

But the specialist that we call in french a "ornotho-laringologiste" here in my home town is the one that minimise's the hole situation and dosen't listen much. he's my ticket and my way to get in touche whit Montreal. By the way the ride there is about 8 to 9 hours from my home town.

thank's for your support
i shall keep in touche and the info that was geving to me was great.
Julie :)
 
31 years old
3,2cm x 3 cm AN diagnose in march 2007
translab surgery on 0ctober 17, 2008 in CHUM à montreal
with BAHA

linnilue

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Re: More and more symptoms
« Reply #9 on: August 01, 2007, 07:45:27 pm »
Dear Juliette,  I am in Montreal quite a bit even though I live in vermont.  My husband's business is in Lachine.  So, if you need help at a doctor's visit or would like a hospital visit just send me an email and if I am in Montreal I'd be more than happy to be with you.  In my previous life I was a labor nurse so I can understand your concerns. So you might want to check in with one of the high risk OB/GYN docs in Montreal before your surgery so they are aware of you and can be apart of your AN team.  Best of Luck to all of you, Holly
Left AN dx. 11/05 Linac radiosurgery 01/06 Burlington, VT for a 9mm x 5mm tumor.  No necrosis yet (2 yrs. post-op).  Multiple post radiosurgery complications, some permanent.  Have radio-oncologist here.  Now see Dr. McKenna, Mass. Eye & Ear Instit., Boston for flollow-up care as my main An doctor.

Windsong

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Re: More and more symptoms
« Reply #10 on: August 01, 2007, 07:55:28 pm »
Hi Julie,

You live in a beautiful area i think.... i've only been up to Rouen Noranda area once in my life when i was nine years old but I can still remember some things.... the island; the bear paw prints on the part of the cottage still waiting for the outside finish;  the daisies we picked in fields of the yellow/white flowers;  the blueberries;  fresh fish we caught in the lake ( well i didn't catch one even though i thought i did  :D  as someone replaced  the little bait fish with a slightly bigger one when i wasn't looking, which made me think i did catch  that fish for a minute    ;D but then the whole catch tasted so good later on an open campfire that i didn't care if someone replaced some little fish for a bigger one )....  i have pictures of the fish and the bear paw prints so maybe  that's why i remember all this.....

About your An:  for surgeons who do this type of op regularly and have done lots,  it is  not the same thing for them as for us who find out we have one.... for them it's what they do;  for us it's  a big thing in lots of ways....  the listening thing is important though .... it sounds as if he is, however....  there are others on the An board in canada who have been pregnant etc who have had surgery so I hope you have posted there as they have encouraging stories too for Ans  found while pregnant....

It does sound as if your An is on the cusp of that magic number of 3 cm. for radiation treatment. Many factors come into decision making though. Location etc and symptoms are factors.....and experience of doctors, of course   ...  I don't think bed side manner has much to do with outcomes ultimately  ... some surgeons are terrible with  "listening" or bedside manner even though they are really very skilled;  others are able to show the compassion and care one would wish for...... skill counts ....

Keep posting as there are many who listen and offer support here and on the other boards.....

My An was around 2 cm when found and treated by radiation  but i have  talked to some who had larger, were pregnant, had surgery and have gone on to have more children too..... I don't know if radiation is an option for you as only someone who has viewed your mri's and knows your situation can determine that....

I do want to send you my good wishes and support during this time as you are far more than a number. Yes, there can be changes in one's life after An ( and they do vary considerably) but when you read the stories people share here we see that all sorts of good things are still there too.... and many many never have more than hearing issues and some numbness maybe ... and some do not have even that..... they do really well.

Wishing you all the best,
windsong



















pearchica

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Re: More and more symptoms
« Reply #11 on: August 07, 2007, 09:54:14 pm »
Hi Juliette: I am sorry about your situation- please keep us updated when able.  I was really glad to see kbonner- Katie weigh in and also lovely Windsong.  As much as you can handle read everything you can on the website about this.  take care of yourself- Annie
Annie MMM MY Shwannoma (sung to the son My Sharona by the Knack-1979)
I have a TUMAH (Arnold Schwarzenegger accent) 2.4 x 2.2 x 1.9CM. CK Treatment 2/7-2/9/07, Stanford- Dr. Stephen Chang, Dr. Scott Soltys