ANA Discussion Forum
Archive => Archives => Topic started by: Angela on June 06, 2005, 01:52:09 pm
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Someday soon I will finish a blog about my post-op experiences. For now, it's only pre-op stuff.
I submitted this info to the AN Archive Patient Directory and JHU list.
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Your name (age optional): Angela Barr, female 36
Diagnosis: Oct 2004, 4cm x 2.8cm x 2.8cm, some cystic components
Treatment: Feb 16 2005, Stanford University (California), 14 hr trans lab surgery by Dr's Robert Jackler, Nicholas Blevins and Steven Chang. Standard 5 days in hospital, plus extra 5 days because of fluid leaking and then a shunt in my back.
Symptoms: Before- Hearing was perfect, but had problems with ear fullness and facial numbness for 5 years. In year 5, during 2nd & 3rd trimesters of pregnancy, developed severe problems with balance and vision.
After- Facial paralysis, 1/2 deaf, continued facial numbness, balance and coordination problems, severe dry eye, tinnitus.
How to contact: email angela.barr@chevrontexaco.com
Optional: Other interesting facts- I suspect that "Timmy the Tumor" and I could've co-existed peacefully had it not grown beyond a certain threshold. I became accustomed to the other symptoms but started losing my balance and seeing fractured or doubled images. Recovery is a bummer (to put it nicely)! I didn't realize that it would be this hard for me. I wasn't broken… yet I don't feel "fixed" either. Started back to work at 16 weeks post-op. If my face doesn't move by 9 months post-op. then we'll discuss options like nerve grafting. For now, I'm trying to be patient >)
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Glad to see Timmy has packed his bags and left for splitsville. Your sense of humor will definitely help you through this, keep it up. :) Although I am a radiation patient, I can relate to the thing in our heads...for me it's still there...I refer to it as the "invader" so far has stopped growing after being Zapped (Gamma Knife style), now if it would just start shrinking...
Good luck in your recovery process!
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Speeaking of AN's and pregnancy, i've had 3 babies in the last four years. When my youngest was 12 months old i started having symptoms, and with reading about the very slight possibility of Oestrogen being the cause of AN's. What if it's been there all my life, and the pregnancy hormones made it grow??
It's certainly an interesting theory anyways, hehe
Take care
Kat :D
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Kat I don't know if there is a connection with estrogen and growth. I had no estrogen after my son was born and still have a hormone imbalance and had the AN after all that. Would def. make for an interesting study ...I say we make the men pregnant and see if their an's grow..yeah...that's what needs to be done :o) Larry will you participate? :-*
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Timmy, go home! and stay there too!
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Angela,
Hopefully you are rid of the beast for good but make sure you have annual MRI's (peace of mind). There are various options about the dry eye on this board - search under red eye as well. This seems to be a common issue and there are various techniques available to help reduce the dryness and pain.
Batty wench,
I maintain to this day that my stomach has never been the same since "we" had kids!!! and I ain't havin no hormone replacement either!!!!!!
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laz you are such the spoil sport lol :-*
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i think we're almost in the same boat. I had 4.5 cm. I had the tinnitus and some minor ear problem for 6-7 years before I found out about the tumor. So, all those years I've been ignoring all the symptoms. I had an ear check but she never required me to have MRI done.
Glad to hear you're recovering good.... can't believe you recovered very fast. I stayed in the hospital for 3 weeks........ surgery took 6 hours only though...... And had a gold weight inplant.... you didn't have to do it?ÂÂ
Take care and best wishes......keep us posted.
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batty we should definately make the guys preggers! It sure would be interesting to see how much they whinge..... hahaha :D
just kidding guys...we know you're tough ;) hehehe
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Timmy may be gone, but the aftermath will be just as bad or worse for awhile IMO. Glad you finely got divorced from timmy, Just thing the torcher he put you through :-\. Hopefully you won't get remarried ;D. Now for the aftermath: Dry eye will be a problem for several months, Headaches will most likely follow, timmy may be divorced but you inner (space) don't know it. Noise will make him mad. Ringing IMO is something you going to have to live with. Balance should get better if you do your excerises, I only toppel over when bending down real low, but you'll probably never pass the sobriety test IMO and I dought the Police officer will believe that you had a tumor removed ???.
IMO your going to have a few good days, a few bad days, and days you can't do nothing but lie in bed. Loud noises will most likely give you migraine's, Start slow and work you way back into daily routine, Find you some good eye drops, I think most of us use Allergan Refresh Celluvisc lubricant eye drops (by the big box), They will make you vision blurry, but you need the lubication IMO. Wind and cold will make you eye dry out quickly (like right now) even fans in the car and house IMO. After about 5 to 6 months you will see some improvement, Slow improvements, a year out you should have most of you facial nerve back except lift, your eye should be watering a tiny bit, but still can't keep up in windy or cool conditions. Your ringing in your ear will probably not improve much, noise even low clanking noises will bother you. Louder noises will make you cringe most likely. Even two to three years out you will still have little lift, Noises will still be agrevating, headaches will still put you to bed at times, but they should be getting less intense and less often. ÂÂ
I am 2 years 7 months out and still see little improvements, but timmy still let's you know he got a hold on you! Hopefully you will not experience none of this, but when a hole has been cut in you head and 9 or 10 of the crainal nerves have been tampered with they go bonker's for a while IMO. You eye site should be back to normal in about 8 months, may have to get your eyes checked a couple of time before they settle down. I have some watering and facial nerve is good with no droop, but I still have no lift, can almost whistle, my eye blinks OK but I have to remind it alot.  Hopefully this will give you some insite on what you may be up against. Timmy "O" timmy what a nightmare he can be!
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RC that was interesting coming from someone so far ahead of me in recovery.
It's like a bad relationship where the guy (or gal) just doens't get it's OVER lol.
Thanks for sharing.
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Bad news: I'm now 14 months post-op and the right-side face still does not work :'(
No twinges, no twitches, no nothing. The baseline facial EMG was dismal and the follow-up test showed no improvement. Very discouraging.
Good news: pain free, Praise God! No headaches and no medication.
I am 6 weeks into acupuncture (which insurance doe$ not cover). Tiny progress in that I can feel the pin-pricks in areas of my face that used to be numb. Otherwise, nothing else happening...
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anab are you doing the accupunture to regain your facial movements?
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When you mean don't work, does that mean you can't blink, eye is not watering, and your left side is saging. All my lower musles work and eye watering some, I have no sag, but no lift. Wrinkles on my forhead are gone on my left side and at the end of the day I can fell alittle sag.
Large tumors are hard on the 8th nerve. 1/3 of us will have pernment damage and will probably never have any lift for what I read and was told.
Has anybody have any lift with a 3.5 tumor size or larger yet? I don't yet and I'm coming on 20 months.. I would give up any lift for NO PAIN anyday. Pain
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Yes, getting acupuncture. So far, it is doing just what my surgeon said... wasting my time and my money.
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Angela,
left field, but have you tried botox?
laz
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Sorry for the delay, haven't logged on in a long time.
No haven't tried Botox. My physical therapist (fellow-AN'er) needed it for her AN side which had been over-stimulated and the muscles wouldn't relax, so she was actually in pain.
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Hi Angela:
Glad you got back to the forum; we haven't met, I'm relatively new to the AN crew.
Looks like we're in the same boat re: facial paralysis.
I just had my 6 month EMG - it DID show 10-15% nerve regeneration.
I have been going to acupuncture also, 2x/week since October,
I know the docs think it's B.S., but I can't help wondering if it did have something to do with it.
The acupuncturist also uses a Luminex Laser after acup.
My facial nerve was CUT during surgery, so the docs didn't think there was a chance of regeneration.
I still can't move my right side, & I just got back from the eye surgeon who thinks I may have an
allergy to the gold weight in my upper eyelid (it's very rare but does happen).
Now I have to go to an allergist & be tested for a gold allergy.
Are you having any facial movement yet on your AN side ?? Take care, Nancy
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a couple things in this post attracted me ...
First off is naming your tumor...
Mines names is Bennie... Bennie the benign tumor :)
some relatives don't think I take things as serious as I should
because I named it , but I told them it was mine and I would name it if I wanted to
Second is the hormone talk... I had hormone problems that had me bleeding up to 20
days out of the month and also have lupus ... had a hysterectomy in March after about 3 years
of this... the last year was the worst... and Bennie who had just sat there took off growing
at a super high rate at the same time I had the big hormone surges and falls...my neuro
surgeon has thought that the hormones played a part in the growth spurt...
As for the naming , my sense of humor dealing with the AN and more so the lupus is
what keeps me going many days... if I didn't laugh I would be a blubbering idiot sitting in
a corner crying... and my life is good between all the problems
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Soundy,
I think your approach is excellent. All of us try to keep a good sense of humor because if we didn't we just about go batty :)
Name your tumor, draw a face to the name and make a circle with a line through it...what ever it takes! It's healthy, therapeutic, and it just plain 'ol makes you feel better. Press on!
Gary
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Soundy,
My tumor is Ivan the Terrible Tumor. Ivan was zapped by CK and I like to envision him in his little death throws. Little x's on his eyes like in the cartoons. 1 year MRI he was smaller than at treatment time. July 10 will be 18 months and I want to erect a tombsone for him. RIP Ivan.
Sometimes it seems like there is nothing to laugh about in this journey. There will be. You keep on asking those questions on Cyberknife Support. They answer. Get on with yor research and get Bennie treated. Then you can concetrate on the Lupus. Stress, stress, stress... not good for you.
I see you are from Tennessee. One of my favorite states and places to go. Was married to a man from Tennessee. I don't hold it against the state.
Sandy