Author Topic: 29 Y/O Male Diagnosis  (Read 2496 times)

Willbur

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29 Y/O Male Diagnosis
« on: October 14, 2016, 06:45:42 am »
Hello Fellow ANA Suffers,

My name is Will and I recently discovered I have ANA yesterday morning. Like many symptoms I woke myself not being able to hear and having tinnitus. I waited a few days before going to the doctor and then when I did they told me no ear infection and that I should be referred to an ENT. At the ENT, similar results, although my hearing was really bad based on the test and the doc pegged me at 90% chance virus 10% tumor. After my MRI, the doc called to inform me of the news and mentioned that it is about 0.90 inches or 2.3cm. I didn't get the exact dimensions, but based on my research this is a medium sized growth. I'm from the Austin, Texas area and I will be going to see a neurosurgeon next week. I haven't Googled his name yet, but he is without a doubt the best specialist based on what my doctor said as he handles these cases all the time (The ENT is a very old guy).

I still have some of my hearing that I would like to keep. I see that radiation might make the growth worse even if it does shrink? Should I seek a second opinion (from Austin, Texas)? If I choose to have surgery what is optimal recovery time? I'm currently off work because of the news since I need to know how this may impact my life going forward. Also, since ANA is unknown, what steps or vitamins, pills do you guys take in hopes it will prevent growth? Do you believe the growth comes from cell phone use? Also, I did have a seizure nearly 4 years ago to the day I was diagnosed with this, do you think perhaps this is related?
« Last Edit: October 14, 2016, 08:09:51 am by Willbur »
Diagnosed@29
10/13/16 - 21x23x19
1/16/17 - 22x23x19
1/24 - Surgery Successful
3/6 - MRI/CT Scan No Regrowth

Kathleen_Mc

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Re: 29 Y/O Male Diagnosis
« Reply #1 on: October 18, 2016, 12:20:07 am »
Wilbur:
1. possibly you cannot have radiation due to the size of your tumor. I don't think radiation makes the tumor worse rather it is likely to swell slightly at first after the radiation and this can put your health at risk.(or instance if too close to the brain stem and it swells there will be pressure on the brain stem). Also, apparently, if a tumor has been treated with radiation if surgery is necessary (because the radiation didn't work, small percentage of this happening) it is more difficult to remove.
2. Yes you should seek more than one opinion on this, see someone who does surgery and one who does radiation.....at least.
3. I myself have never heard of any vitamins or medications that will decrease growth, or prevent re-growth
4. cell phone use cause, there is studies that say yes and some that say no......anyone's guess
5. seizure? I would think not likely related but discuss this with your doctor.
Sorry you have had to join our "group"
Take care
Kathleen
1st AN surgery @ age 23, 16 hours
Loss of 7-10th nerves
mulitple "plastic" repairs to compensate for effects of 7th nerve loss
tumor regrowth, monitored for a few years then surgically removed @ age 38 (of my choice, not medically necessary yet)

michellef08

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Re: 29 Y/O Male Diagnosis
« Reply #2 on: October 31, 2016, 09:55:03 am »
Hi, your story sounds exactly like mine except I was 27 when diagnosed!

I would get a second opinion if I were you, especially if you are thinking about it. It can never hurt to speak with more experienced surgical teams to find out the most about your unique situation (tumor size, shape, location, symptoms, risks, etc.). I spoke with 3 experienced surgical teams before making my decision.   You may also want to think about seeing doctors outside of Texas as well - there are many VERY experienced surgical teams around the country with great outcomes. My surgeons were able to preserve my hearing level (only about 10% lost post-op)! You can send your MRIs to both House and Keck for free phone consults!

 For recovery time - I took 6 weeks off work, and was back to my 9-5 desk job after that and have never looked back! I think my young age and basically no responsibilities (no kids, didn't open my work computer) for that entire time really helped me have a quick and complete recovery in those 6 weeks.

Good luck!
Diagnosed Dec 2012: AN right side 1.4 cm with mild hearing loss and tinnitus. Surgery: Middle Fossa at House with Schwartz/Friedman on April 10, 2013. Entire tumor removed, no facial issues, no balance issues, and they preserved my hearing!!

v357139

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Re: 29 Y/O Male Diagnosis
« Reply #3 on: November 04, 2016, 07:51:19 pm »
Different doctors will have different opinions, so it can be helpful to get a few opinions.  I have seen quite a few people get radiosurgery at 2.3cm.  Best to speak to experienced surgeons to discuss surgery, and experienced radiosurgeons to discuss radiosurgery.  You can research the differences between the two approaches, and that will help you ask better questions of the doctors.  Talk to doctors with substantial experience and great track records.  AN is rare, and not all doctors have substantial experience.  Make sure you talk to ones that do.
Dx 2.6 cm Nov 2012, 35% hearing loss.  Grew to 3.5 cm Oct 2013.  Pre-op total hearing loss, left side tongue numb.  Translab Nov 2013 House Clinic.  Post-op no permanent facial or other issues.  Tongue much improved.  Great result!!

Willbur

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Re: 29 Y/O Male Diagnosis
« Reply #4 on: January 17, 2017, 11:20:13 pm »
Hi, your story sounds exactly like mine except I was 27 when diagnosed!

I would get a second opinion if I were you, especially if you are thinking about it. It can never hurt to speak with more experienced surgical teams to find out the most about your unique situation (tumor size, shape, location, symptoms, risks, etc.). I spoke with 3 experienced surgical teams before making my decision.   You may also want to think about seeing doctors outside of Texas as well - there are many VERY experienced surgical teams around the country with great outcomes. My surgeons were able to preserve my hearing level (only about 10% lost post-op)! You can send your MRIs to both House and Keck for free phone consults!

 For recovery time - I took 6 weeks off work, and was back to my 9-5 desk job after that and have never looked back! I think my young age and basically no responsibilities (no kids, didn't open my work computer) for that entire time really helped me have a quick and complete recovery in those 6 weeks.

Good luck!

Guess I missed this. Think I can recovery quickly enough to work from home after like 2-3 weeks of being out?
Diagnosed@29
10/13/16 - 21x23x19
1/16/17 - 22x23x19
1/24 - Surgery Successful
3/6 - MRI/CT Scan No Regrowth

 


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