Author Topic: My daughter found out she has an AN-we have questions.  (Read 3977 times)

Neskew

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My daughter found out she has an AN-we have questions.
« on: November 05, 2014, 06:35:26 pm »
My 23 year old daughter had an MRI three weeks ago and we were told a week later that she has an AN . We were told we should have another one done in 6 months. On 10/24, she had emergency gallbladder surgery and had trouble recovery and was in the hospital until yesterday. She has been also diagnosed with POTS. While in the hospital an ENT wanted another MRI done with contrast and that one showed the AN lit up, bigger than three weeks ago and supposedly in a dangerous spot. The ENT wants us to go to USC and see Dr. Friedman but the hospital doctor wants her to go to the house Institute and that is where the referral is for but we are waiting for the other one. The ENT said she needs surgery(middle fossa). Any suggestions or recommendations?

CHD63

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Re: My daughter found out she has an AN-we have questions.
« Reply #1 on: November 05, 2014, 09:48:59 pm »
Hi Neskew and welcome .....

So sorry your daughter has been diagnosed with an AN, but glad you found this forum.

Just so you know, Dr. Rick Friedman was at House Ear Clinic up until September, 2013.  He and Dr. Marc Schwartz (who is still at House) removed my acoustic neuroma in 2011.  Both of them are excellent surgeons so I would urge you to get opinions from both of them.  Both will do free evaluations based on the MRI and audiogram (if you have one).

Thoughts and prayers as you work through the decision-making process.

Clarice
« Last Edit: November 05, 2014, 09:53:43 pm by CHD63 »
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

Neskew

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Re: My daughter found out she has an AN-we have questions.
« Reply #2 on: November 06, 2014, 07:17:25 am »
We have two MRIs, one without contrast and one with. We do not have an audiogram. How do we get a free evaluation without a referral from insurance.
Nora

CHD63

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Re: My daughter found out she has an AN-we have questions.
« Reply #3 on: November 06, 2014, 09:40:46 am »
Hi Nora .....

Since Dr. Friedman and House Ear Clinic do free evaluations, insurance is not involved.  Your daughter will need to sign a release and you may need to pay the imaging facility a small fee for additional copies of her MRI CD (the one done with contrast).  Then send one to each place with a brief description of her history and symptoms.

When she decides where she will have treatment, then the insurance will need to be contacted to determine coverage.  You do not need a referral for the free evaluation.

Hope that helps.

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

Neskew

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Re: My daughter found out she has an AN-we have questions.
« Reply #4 on: November 07, 2014, 06:12:22 am »
We went to the House Institute yesterday and met with Dr. Luxford. He confirmed her tumor and they are scheduled a Middle Fossa Surgery for next Thursday. Dr. Schwartz will also be performing the surgery. It will be at St. Vincent's. Do you think we need a second opinion? Also I do not know much about the hospital , any info?

CHD63

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Re: My daughter found out she has an AN-we have questions.
« Reply #5 on: November 07, 2014, 06:48:06 am »
House Institute is a highly respected acoustic neuroma treatment medical facility and Dr. Schwartz is an excellent neurosurgeon so she will have good care there.

It is strictly up to your daughter and you whether you want another opinion, or not.  If it feels right to go ahead with surgery next week, that is what you should do.  If you have any hesitation, I would get an additional opinion ..... but that is just what I would do.  It must be your decision so you feel right about it.

St. Vincent's is a small hospital so it is very easy to get around.  My room was extremely tiny and at the end of a hall, where people tended to come to use their cell phones so I was very glad to be discharged on Day 5.  When I was there three years three years ago, my husband and I stayed in Seton Hall (St. Vincent's guest facility right next to it), which was clean, comfortable, quiet, and convenient.  House Ear Clinic is right across the street from the hospital so it was very easy to walk between all three places.

Many thoughts and prayers.

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011