Author Topic: my an story + add on  (Read 2913 times)

neal r. lyons

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my an story + add on
« on: May 27, 2007, 03:14:27 pm »
hi i'm neal newbie  finally had an MRI on 4-26-07 in fairbanks,ak result: acoustic neuroma 2.6x2.8 on 2-3-07 while waiting for shrimp burger i was invaded by a tingling sensation starting r.side chin and rapidly up to r.side head(i still have r.side numbness today 5-27  went 911 to yakima reg. hosp.)they( 2 family medicine local doctors) said i may have had a TIA-mini stroke discharged next day(superbowl sunday)and put on small aspirin daily and had 9(in richland,wa.)follow up nuclear stress test(passed) and my veins in heart and neck checked okay was put on lg aspirin and cholesterol med(crestor) saw another fam med dr(my sister's) and was told i,d had a mild stroke and was lucky he put me on bp med as my bp had spiked to over 200 on 2-3  could not get in to see a neurologist in richland because i did not have my ins. card on hand(that's another story) don't leave home without it if you have ins.the bottom line is (hindsight) i should have had an mri right away and/or seen a specialist  apparently, there are plenty of folks out there who are not aware of symptoms of an's such as two that i had:sudden loss of hearing a few years prior and numbness of face  i'm scheduled for sub-occipital tumor removal on june 1st at uw med ctr in seattle  i've consulted with 2 surgeons who will be attending(still want to get some questions such as their track records answered) any advice will be appreciated by the way a note on brown paper bag on my car window said they owed me a shrimp burger and coke when i returned to my car i collected!  i need to add that i may decide to postpone the surgery  i think i'm rushing it  a little  more research begs more questions  time,fortunately is with me  i need to be sure of  my decision-bye for now  i'll keep you posted sincerely,neal
« Last Edit: May 27, 2007, 09:35:47 pm by neal r. lyons »
AN 2.6X2.0X2.8 (right side)                                           June 22, 2007
House Ear Clinic/St. Vincent's Hospital@ Los Angeles, Ca.

Translabyrinthine(5 1/2 hr.):  Dr.Brackmann-neurotologist    Dr.Schwartz-neurosurgeon    Dr.Kutz-incision@stitches    Dr.Stefan-internist

Windsong

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Re: my an story
« Reply #1 on: May 27, 2007, 04:27:08 pm »
ah.... am wishing you lots of  good wishes for june 1st and wellness after !!!

i saw a number of neurologists before my An was diagnosed and they all noted the areas on my face that were numb but not a one thought of following up for an An... interesting thing for me over the years is that the numb areas for the most part now behave and i don't notice them... (well not in the same way as when they first started...)....maybe there was some sort of new nerve pathway set i don't know but the brain is a mysterious thing and so are nerves sometimes....

W.
« Last Edit: May 27, 2007, 07:34:03 pm by Windsong »

Obita

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Re: my an story
« Reply #2 on: May 27, 2007, 05:17:37 pm »
Hi Neal and welcome to the forum.

I am three years post op and doing super.  Finally getting the diagnosis is shock and relief at the same time.  At least, knowing what it is, explains so much.

Good luck to you on the first and plan on taking it real easy for a while post op. 

Kathy
Kathy - Age 54
2.5 cm translab May '04
University of Minnesota - Minneapolis
Dr. Sam Levine - Dr. Stephen Haines

Betsy

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Re: my an story
« Reply #3 on: May 27, 2007, 06:29:36 pm »
Hi Neal,

Thanks for sharing your story with us.  I went down a similar path before I was diagnosed.  Very frustrating.  Kathy's right...when I finally found out it was an AN, one of the first emotions I felt was relief that the unproductive testing was over.  Will be thinking of you on June 1st.

Betsy



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

Obita

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Re: my an story + add on
« Reply #4 on: May 28, 2007, 08:56:32 am »
Go with your gut Neil.  If you are not 100% sure that surgery is right for you, postpone it until you KNOW which treatment you want and when.

Good luck to you, Kathy
Kathy - Age 54
2.5 cm translab May '04
University of Minnesota - Minneapolis
Dr. Sam Levine - Dr. Stephen Haines

macintosh

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Re: my an story + add on
« Reply #5 on: May 28, 2007, 12:45:10 pm »
Neal--

You are within the range for radiosurgery if you chose to go that route. Some sites that provide useful information are www.acousticneuroma.neurosurgery.pitt.edu, and pubmed.gov, where you can use search strings like acoustic neuroma radiosurgery and acoustic neuroma microsurgery. Tumor control rates for radiosurgery are comparable to those of experienced AN surgeons, and radiosurgery has a lower rate of posttreatment side effects.

This is an abstract from Neurosurgery, July 2006; principal author Pollock, of a study done at the Mayo Clinic:

OBJECTIVE: The best management for patients with small- to medium-sized vestibular schwannomas (VS) is controversial. METHODS:: A prospective cohort study of 82 patients with unilateral, unoperated VS less than 3 cm undergoing surgical resection (n = 36) or radiosurgery (n = 46). Patients undergoing resection were younger (48.2 yr versus 53.9 yr, P = 0.03). The groups were similar with regard to hearing loss, associated symptoms, and tumor size. The mean follow-up period was 42 months (range, 12-62 mo). RESULTS: Normal facial movement and preservation of serviceable hearing was more frequent in the radiosurgical group at 3 months (P < 0.001), 1 year (P < 0.001), and at the last follow-up examination (P < 0.01) compared with the surgical resection group. Patients undergoing surgical resection had a significant decline in the following subscales of the Health Status Questionnaire 3 months after surgery: physical functioning (P = 0.006), role-physical (P < 0.001), energy/fatigue (P = 0.02), and overall physical component (P = 0.004). Patients in the surgical resection group continued to have a significant decline in the physical functioning (P = 0.04) and bodily pain (P = 0.04) subscales at 1 year and in bodily pain (P = 0.02) at the last follow-up examination. The radiosurgical group had no decline on any component of the Health Status Questionnaire after the procedure. The radiosurgical group had lower mean Dizziness Handicap Inventory scores (16.5 versus 8.4, P = 0.02) at the last follow-up examination. There was no difference in tumor control (100 versus 96%, P = 0.50). CONCLUSION: Early outcomes were better for VS patients undergoing stereotactic radiosurgery compared with surgical resection (Level 2 evidence). Unless long-term follow-up evaluation shows frequent tumor progression at currently used radiation doses, radiosurgery should be considered the best management strategy for the majority of VS patients.

neal r. lyons

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Re: my an story + add on
« Reply #6 on: May 28, 2007, 05:41:36 pm »
thanks much to you folks for the words of encouragement and thanks mac for helping me realize that all options are still on the table for me!  neal
AN 2.6X2.0X2.8 (right side)                                           June 22, 2007
House Ear Clinic/St. Vincent's Hospital@ Los Angeles, Ca.

Translabyrinthine(5 1/2 hr.):  Dr.Brackmann-neurotologist    Dr.Schwartz-neurosurgeon    Dr.Kutz-incision@stitches    Dr.Stefan-internist

ppearl214

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Re: my an story + add on
« Reply #7 on: May 28, 2007, 06:15:06 pm »
Hi Neal and welcome. I am glad you are finding wonderful info here to help you and look forward to your continued contributions.  I see you not only tipped your toe in the waters but are as active as can be... we are thrilled to have you here.

BTW, just spoke on the phone with a mutual Seattle friend of your's/mine ;).... she's truly a beacon of light when you need it.  :)

Again, welcome.
Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"