Author Topic: 33mm AN radiated  (Read 3427 times)

lilith

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33mm AN radiated
« on: January 16, 2017, 07:08:30 pm »
Dear All,

I hope my story helps patients with AN that are below 30mm and may consider radiation.

5 May 2016: I was diagnosed with a 33 X 22 x22 mm AN. My 2 symtomps were wonky head and dumbness in the right side of my face; sometimes fatigue. My hearing was good in both ears, although a lower percentage of hearing in my right ear (not noticeable to me).

25 May 2016: I underwent radiation (one session). I consulted 4 neurosurgeons and 2 radioneurosurgeons, all of them, except one recommended radiation, even with the size of my AN. From day 1 I noticed I could not hear properly.

Months 4 and 5: Awful! My sympomps increased to dizziness, extreme fatigue, nausea, lost some hearing in my right ear, lost of apetite. Wonky head (all day and night) and dumbness in my face continued.

6 months later (November 2016): 35 x 28 mm (do not have the third measure) but necrosis very noticeable. My symptoms have dissapeared (in month 6) at 90% A few days I feel wonky head but just for a few minutes. Hearing in right ear did not improve but is usable.

Conclusion: My extreme symtomps were the consequence of the rapid necrosis I was experiencing. The measurements indicated swelling which was expected.

Almost 8 months later I continued to feel almost back to normal. I have detected a few preceding episodes that detonate my wonky head: carrying heavy objects or my 5-year-old girl, screaming and excesive stress (not accumulated mainly sudden news that imply extra work).
 
Too soon to run into conclusions but so far I am happy with my decision. I will post my 1-year results.

All the very best to all patients in this forum.

Lilith

p.d. Sorry about my English, it is not my first language!
33mmx19mm AN (Diagnosis 5.05.2016)
Radiosurgery in Mexico City: 25.05.2016
Pre and post-radiosurgery: little bit of imbalance, mild hearing-loss, wonky head.

ANSydney

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Re: 33mm AN radiated
« Reply #1 on: January 16, 2017, 11:20:15 pm »
Hi lilith, given your asymmetrical dimensions, it loos like the 33 mm dimension includes an intrameatal portion. I think most woudl call your tumor a 22 mm AN. Some are reluctant to do radiosurgery once the tumor is over 30 mm.

Hope your hearing keeps going. Overall, it sounds like everything went well.

SP

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Re: 33mm AN radiated
« Reply #2 on: April 06, 2017, 06:14:57 am »
Hi Lilith; thanks for sharing your story. Hope all is going well with you.

Stella
My AN Story – Sydney to Stanford CK
2.3 x 2.2  June 2022@7yrs
2.9 x 2.9  May 2020@5yrs
2.9 cm  Mar 2019@4yrs
2.9 cm  Aug 2018@3yrs
3.1 cm  Aug 2017@2yrs
3.2 cm  Aug 2016@1yr
3.2x3.0x2.5cm AN; CK Aug 2015

Patti

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Re: 33mm AN radiated
« Reply #3 on: April 06, 2017, 07:08:21 am »
Thanks for sharing!
4 cm AN removed 12/2000
subsequent brain swelling
removal of part of cerebellum
face, scalp,tongue numbness and partial paralysis
no corneal sensation and no tears-frequent eye issues
cognitive issues
Regrowth (3.1 x ..86 cm) treated by SRS on November 6, 2015