ANA Discussion Forum
General Category => AN Issues => Topic started by: Dana on July 13, 2008, 11:13:15 am
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Hi everybody,
When talking to new ANers, we all couch our advice to acknowledge that everyone and every AN responds differently to different treatments (including wait and watch). This morning it made me think that perhaps we should do a survey to 'add up the numbers' to see how much each of us has been affected by our AN + AN treatment. I'll put summaries up every week or so.
In a reply, post the size of your AN (or if you have NF2), what treatment you've had if any, when you had it, and a "grade" on how it affects your life everyday from 1 to 10:
1 - no affect
2 - minimal (eg a little hearing loss, a little tinnitus)
3
4
5
6
7
8
9
10 - total disability (can't work, severe deafness, severe change of life)
I'll start:
1.5 cm, GK July 2007, 3
Dana
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Dana, this should be interesting to see the results. I had a 3.5 cm tumor removed by translab in Sept. 05. Even though I have no hearing in one ear, slight tinnitus, still some facial paralysis and numbness I would still grade the everyday effects on my life as a 2. There is very little that I'm unable to do.
Jean
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Hmmm............This is a toughie :).
My AN was 3.5 cm and I had it romoved on 5-9-08.
I'm still recovering, having headaches and fatigue, and I'm also SSD.
So, I'd say--at this point--about a 5 or 6.
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Dana:
Kudos to your creativity. This is an innovative concept. I'll play. Here goes....
4.5 cm. Surgery (Retro) 6/06 and FSR (26 zaps) 9/06 -10/06 No complications. Grade: 2.
SSD, negligible balance deficiency, slight dry-eye and low-grade tinnitus. All easily surmountable or ignored. Life is good. :)
Jim
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Hi Dana-
Cool idea!
2.0 - 2.5 cm
Surgery - translab - on 4/30
Still recovering, but would rate life as a 2 or 3!
I'm SSD on the right side and have facial palsy, intermittent balance issues, but - as Jim said - all surmountable!
Life IS good!!
Debbi
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8mm AN; CK Sep 2007; grade 2. Tinnitus, hearing loss. Carrying on. :)
Steve
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2 cm AN
treated by CK November 2001
I think it might be of further interest to do the life quality score in terms of pre-treatment and post treatment
for me it is a 2 before and still is today
Mark
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1.8 cm
translab- 8-11-07
grade: before 1
after 6
chronic headaches, SSD w/ LOUD tinnitus, balance issues. Life is good -- though i could do without the headaches :P
shy
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wow Dana! Great idea! :)
Ok, I'll play.
1cm Left AN, Cyberknife radio April 2006... grade is a toughie... I'll say 2. Minimal hearing loss in AN ear, occassional "wonky head", some balance issues (but my Chiari does it as well). Yeah, I'll stick with a 2.
Phyl
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2.6 cm right side AN
CK in August 2007
Still recovering but as of now Mostly Grade 2 and sometimes Grade 3: Balance issues and as Phyll says, occasional "wonky head"
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2.5 cm. Removed via trans occipital approach 4/17/07. Pre treatment grade 1. Post treatment 3. My biggest challenge is the balance issues. I still have the wonky head especially in crowded places. I recently got a BAHA so the SSD isn't an issue now.
Linda
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I'll respond.
I had a 2.4cm AN on the left side. It was removed via Retrosigmoid on Oct 1, 2007. Grade before was 1. Grade after would be 3 becuase I did lose my hearing completely on the left side, did have tinnitus but its manageable, still recovering from facial paralysis on left side (60% back). Balance has returned to preconditions. I just wish this scar would heal. After 9 months, its still tender down around my neck where the neck turns alot.
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right AN - size of "man's fist"
Translab 12/1995
Before: better than a 1!!
Now: I'd say 2 - have some limitations but have adjusted and have a very fulfilling wonderful life!! ;D
(SSD, paralyzed face, eye weight, tire easily, balance issues - esp. when tired - but have learned to live LARGELY with all!!)
K ;D
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grade 3 !
no headaches or anything disabling .. more of an annoyance... facial and eye issues top the list
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Before 5
1.5 CM retrosigmoid 2005
Grade 8-9
February, 2008 labyrinthectomy
Grade 1 (even though I am deaf left with tinnitus in both ears and hearing loss in serviceable ear)
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4 CM surgery June 2006
Grade 7 right after surgery due to complications (2 CSF leaks, menigitis, lumbar drain, double vision and three eye surgeries)
Now grade 3 (SSD, tinnitus, facial paralysis, eye issues) However, have a wonferful outlook and I stay positive, God is good and I am blessed to be healthy and able to work, play and exercise! I don't let my "little issues" keep me from doing anything.
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Very tiny AN, diagnosed incidentally, no typical problems.... so zero for me on that. Anxiety from knowing it's there? Let's go with a 5. Shattered wrist with external fixation, RSD, more surgery to insert hardware, radial sensory nerve impingement with third surgery anticipated in 3 months? I'll give that a 9.92483. Being alive, regaining my sense of humor, grabbing back the floating pieces of my soul (think Alka Seltzer's "The Blahs" commercial from the 60s)? Let's go with Pi. Hi all, miss you, not here much because I'm still wedded to my therapy (feel like I'm joined at the hip with my therapist...shhh don't tell my better half). God bless you all.
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Beancounter -
sorry I missed you!!! I'm currently out of town, but will contact you when I return. Sorry to hear you're still dealing with the therapy.
Anyway - my response to the question at hand.
Retrosigmoid surgery 5/31/07 tumor was 2.5+ cm
SSD - left side (only permanent side-effect)
BAHA implant 3/4/08 processor 6/4/08
I'd honestly like to say I'm grade 1 - no affect - but I'd imagine I'd be lying. Can't really say I'm a grade 2 though. I guess I'd put myself at grade 1.5
Jan
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Hi All,
I had a 1.6-1.8 cm AN removed via retrosigmoid on 4/2/08. Before surgery I was a 0 (minus the anxiety), today I'd say a 2-3. Not the same person, mostly annoyed by the eye and facial thing but there's really nothing I can't do now that I couldn't do before (haven't attempted swimming yet!).
Hope
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Yep, I'll play too. 2CM, GK, and I'm going to say Grade 2 and some days Grade 3, unless I'm feeling sorry for myself, then it's a 4! Truthfully, I know I'm lucky in that my symptoms, however annoying they might be, are relatively minor. But, let's just call it 2 1/2, because of tinnitus and the days it seems extremely loud to me, and because of wonkyness.
Sue in Vancouver USA
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Deal me in,8 cm removed via translab in april 07, 17 1/2 hr surgery.
i still have a non animated face,left side ssd,and some other fun stuff that i will not bore you guys with.
i would rate it as a 2 on the physical side of things,3-4 on the mental side,but thats only when i start thinking,which aint often.
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1.3 cm AN -- trans-lab surgery 1/2008
Pre-surgery quality: 1
Post-surgery quality: 1 (six months following surgery)
gradual hearing loss was my only symptom; SSD my only post-surgery "issue," and that is being abated by my BAHA Intenso.
I did experience extreme fatigue following surgery (I think this was a very minor perturbation compared to the various balance, visual, facial, etc. issues experienced by many), but it lessened steadily during the months after surgery, and, at six months out, I now feel that I'm back to all my normal activities and energy level.
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Well, mine might be a bit different since I need a face to work and I don't have a face that works right now and may not for the next two years -- if ever. It has had a huge impact on my life. One in which I've had to redo and re-think everything.
I started in with a 1.5cm and life was a 1. I had some balance issues but none that actually affected my life.
Now, 7 months later it's an 8. My life is totally different than it was a year ago. I now have synkinesis with some pain, most of my hearing is gone, I'm having an MRI in two weeks because my surgeon said something isn't right, and my career as I knew it, is gone. The only reason I don't classify it as a 10, is that I have faith there is something better for me in the future.
David
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The only reason I don't classify it as a 10, is that I have faith there is something better for me in the future.
David
David -
I, too, have incredible faith that there is something better for you in the future.
Keep the faith and stay strong.
Good luck with the MRI.
Jan
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AN - 2.8 cm
translab 11/08
1 good ear left, with both tinnitus
grade 2
.......and life is priceless.
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Hi All,
Since I'm still consider myself a "Newbie", by the way how long until I'm not a "Newbie"? Any one know?
Since being dx back in March of 08 and I am on the "Wait and See". My AN is considered small 8 x 8 x 12 mm, I would say overall a 2 - 3 daily. Everyday it remnds me that it is there with either ear pain, pulling of my face, headaches ect. But I work every day and still do my normal activity although I would say that I fatigue more easily. Is that normal?
LisaP
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I had Translab, 2cm , 31 months ago. No complications or complaints. My health and life are completely normal. Constant tinnitus in both ears is more noticeable when I don't wear my aid. Most days I forget I have SSD. Life quality pre op grade 10, post op grade 9+ The cup has always been more than half full.
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I'll play.........................3.5 Translab 7/28/05 the day before other than balance issues, I was a 1. now three years later I am a ten. My entire life has changed. I flunked out of PT after three months of daily PT, I have migraines at least three times a week, even with Topomax and Straterra and Cymbalta and the rest of the list of scripts. I go for lymphedema treatment five days a week for three hours a day. I have also been diagnosed with NF2, which was there when the first AN was removed, but wasn't mentioned to me at the time. I am a wait and watcher on that one. I enoy the hours I can and am thankful for a lot of things, but if I had my druthers, I would have gone swiftly in the night before facing this. I feel like a whiner because so many have it so much worse than I do and I am thankful it isn't any worse.
I wish I had found this forum before my surgery, I would have been better informed and the issues wouldn't have been as difficult to face. I admire everyone here.
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I feel like a whiner because so many have it so much worse than I do and I am thankful it isn't any worse.
oh you are not a whiner .. I know people who whine over a little sniffel ... dont understimate the strength you and others have! we need a little whine and cheese for support ... but then push on for the next battle!
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Brendalu and LADavid, Actually I've been surprised that so many folks have rated their lives at 2 or 3. I definitely think some descriptions I've read seem like an 8 or 10 to me!
In the next few days I'm going to figure out how to compile all the responses, and post a summary.
Hugs to all,
Dana
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Hi there,
Mine made it to 9 x 6 mm pre CK in 1/08. Grade 1. Constant tinnitis, occasional balance problems but not really bothersome. And this random morse code clicking noise. Guess that's ET (yep, my AN's name), calling home.
Sandra
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2.1 cm tumor. CK completed 7/11/08.
I don't let it stop me from doing most things, but I can't do technical rock climbing anymore (because of mild balance issues) and I live with mild fear it will ruin my career if news gets out about my tumor. I'm also a bit stressed lately because I'm in early recovery from CK treatment and Decadron-itis and feeling quite fatigued (but improving with each passing day :) ).
Things could be a lot worse, however, so I'll give it a 3.
Tumbleweed
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Clarification - what I meant is that some descriptions I've read on the board in general (not this post specifically) sound like an 8 or 10. Satman?
Hugs,
Dana
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hey there dana,it has been a very rough road but with all the support here and a feeling of legitimate caring i have put the depression behind me.
one of my favorite sayings is "the surgery was the easy part" now if i could just get this smile to straighten out !
i truly believe that the reason my tumor was 8 cm is because I [being a man] did what most men do best,ignored the symptoms.
guess i learned the hard way,ha,ha
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Satman - Definite kudos to you. I have had long-term depression for decades, so I think it's GREAT if you've been able to overcome all that the AN experience threw at you. Maybe in the "screwy" world we live in, an asymmetrical smile is most appropriate!
Yes, I'd say the biggest down side to male 'chavinism' is the denial of symptoms and feelings among men, but things are getting better. My hubby was diagnosed with MS a few years ago, after a year of "it's all in your head" (a classic for women that produced much of the frustration that created the women's lib movement, I think). Luckily,he's a fighter, realistic and open to emotional change, but it's hard on him to not be in top shape. Our vow is to enjoy life and have dreams despite it all.
My best to you,
Dana
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Dana,
Cool thread & topic. I'd like to play too. :D
I'd say that although it took me between 6-9 months to climb the numerical ladder up to a level #2, that's where I am and have been doing everything that I ever did prior to AN surgery. I am not going to complain (too much) about the deafness, tinnitus, slight imbalance and a freakish little twitching sort of spasm in the left side of my jaw area. Life is good! ;D
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Dana,
I know I'm still in the early stages of recovery since I just had translab surgery 2 1/2 weeks ago, but I would have to rate this a 2. My anxiety before about what to expect was probably a 5. My tumor was 1.9 cm. The few problems I do have aren't as bad as I thought they would be. Now I hope I didn't just jinx myself by giving my recovery a 2!
Rosalie
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Rosalie,
Wow! You are doing REALLY well to be at a 2 in just 2 1/2 weeks. Congrats! ;)
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Pre AN long before diagnosis and symptoms 1
Pre AN with damaged hearing/pain/ringing/depression 5
approx. 3 combined stages pre surgery
Post AN
Surgery/ICU 7
Balance right after surgery 4
SSD post surgery 6
No headaches (cranioplasty) & No csf leak 1
No facial problems whatsoever 1
Complete tumor removal/peace of mind 1
No titanium (bone flap put back) & dissolvable stitches 1
Balance now and weeks after surgery 1.5
No fat taken & no scar on stomach 1
Scar behind ear (cosmetics due to short hair) 4
Low ringing/tinnitus (same prior) 2
Post surgery depression 5
12 categories divided by 34.5 total
Total Average 2.88 say 3 (3 pre & 3 post)
* obviously based upon various factors and rationale*