Author Topic: New here. 17 yr old daughter just diagnosed  (Read 3108 times)

Katiesmom

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New here. 17 yr old daughter just diagnosed
« on: September 08, 2016, 08:37:09 pm »
Hello everyone.  My name is Stacy, and my 17 yr old daughter Katie was diagnosed with a 4 mm AN last week.  She suffers from severe allergies, and after a particularly bad attack she showed stroke like symptoms (facial paralysis, slurred speech).  She was initially diagnosed with trigeminal neuralgia, but contrast MRI showed the AN.  Today we found out she also has a potential arachnoid cyst in the medical temporal lobe.  We live in South Alabama, and is going to BUA in 2 weeks.  The neurologist today started her on topamax for her headaches/migraines.  She's been having headaches almost every day, and with those comes the facial paralysis.  They keep saying her allergies are causing swelling and aggravating the facial nerves, complicated by the tumor.  They also think that the headaches could be caused by a vitamin deficiency.  She has to have another MRI to get a better look at the arachnoid cyst. 
I am planning on sending her MRI and report to the House Clinic.  I noticed they ask for the abr and vng resuts as well, but no one has mentioned those.  I'm worried that her dr's so far are in over their heads and really don't know what they're talking about.  The ENT that initially diagnosed her convinced my husband this tumor was no big deal and she could probably live her whole life with no issues.  Should I push for the vng and abr tests?   Are they necessary?  Has anyone else heard that allergies could be worsening her symptoms?  Thank you.

alabamajane

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Re: New here. 17 yr old daughter just diagnosed
« Reply #1 on: September 09, 2016, 08:46:46 am »
Hi Stacy,
So sorry to hear your daughter has been diagnosed with an AN and other issues. It's overwhelming for sure. It is very small at this point and that is good. It gives you time to make your treatment decisions, keeping in mind that size alone is not the only parameter to consider.

I too am from South AL and understand your concerns with our "choice" of knowledgeable doctors. I believe UAB will be a good start for you. I also went there and was very pleased with the doctors I saw. Please feel free to e: mail me for further info. I have spoken with several AL patients over the last several years; several who went to UAB. We also have a support group which will be having a meeting within the next month. You will find much valuable info at our meetings and usually quite a few folks with whom you can gather more info concerning their journeys.

You may need to see an ENT who has an audiologist Dept. in office. That is how I got those various tests run that you mention.

Good luck, and let us know how your other consults go. I also sent my records to House clinic and a doctor called me and was most helpful and informative. It may be best to wait until you have had further testing to consult them or you could send those results once you get the tests run,, if they are in fact prescribed by someone.

Let me know if I can help. We are here to give you our " non medical" advice based on our experiences.

Jane
translab Oct 27, 2011
facial nerve graft Oct 31,2011, eyelid weight removed Oct 2013, eye closes well

BAHA surgery Oct. 2014, activated Dec. 26