ANA Discussion Forum
General Category => AN Issues => Topic started by: mch on November 02, 2007, 05:21:09 pm
-
Hi,
I am now 6 months post op (retrosigmoid) small AN removed - SSD on left. I have been tackling all sorts of vestibular exercises - my balance has imporoved but due still feel challenged. At times feel clumsy when
dropping things or bumping chair or wall. My biggest frustration and struggle is the daily constant fuzzy, tight head and then the ache through the neck. My head feels so heavy after working and concentrating at my jobs. I also become disoriented and spacey when in the shopping mall not as enjoyable as before or grocery store. I sometimes will take a tylenol or ibuprofren etc to see if it lifts but feel that it at times it makes it more fuzzy or wonky. Can be easily overwhelmed with loud noises, the vacumn etc., I have had some massage therapy, but then feel that it makes the neck even more sore and tight after. My husband has been so helpful with my emotional frustration and disappointment, I'm not myself. The inviisbile aftermath is discouraging - Normally so capable and productive and able to manage it all. The aspects of post-op are with me from sunrise to sunset. Haven't taken any prescriptions as of yet - kinda leary to due to side effects etc., Not sure if this would help disapate or just temporary - suggestions, comments etc much appreciated !
Marcia
-
Hi there Marcia - Well, I know exactly how you feel, unfortunately because I'm still feeling it - 16+ months post op. Still with the constant 'full feeling' in the head. I didn't think it would be like this post op either (+ I've got total facial paralysis right side - going for surg. 11/20 to at least 'look' more normal). I do find Aleve helps when the head stuffiness gets too much, but it doesn't last long... As Pattibobatti says, 'are we having fun yet?' One of the toughest things for me is when at work all the noise - I just want to hide under a rock! Wish I had some suggestions for you - I did purchase a musician's plug when the noise level gets too much (it's fitted - had it done at the ENT dept. at the hosp. I went to -cost me $75., does help, but only a little, I can stick my finger in my ear & get almost the same results). I go to the grocery store 1st thing on Sat/Sun mornings, before the crowds; & the mall? haven't been for months (& I need some new clothes soon!!). Just keep putting one foot in front of the other (as best you can) - I'm glad you have someone (husband) to lean on (figuratively & literally). Always good thoughts, Nancy
ps: oh, the balance issue WILL get better as time goes on (see, I knew there was something positive to say - geuss I'm just tired of it all....). I don't take other meds, 'cept for the Xanax 0.25 mg on Sunday nights because I'm having insomnia problems again....think I'll look into an antidepressant after my surgery, need something to ward off this depression....
-
Marcia
Well I am at 10 weeks post op so I am not much of an experienced expert (yet ;)).
The key is to walk everyday.
Power walk if you can and try to do this not just on sidewalks etc but also on uneven areas (fields, lawns etc). Practice stairs daily.
Carry an earplug (for your one good ear) with you at all times. I have bought packets of these and stashed these everywhere (purse, car, coat pocket, kitchen, next to hair dryer)…. I know that if I am around loudness (mowers, vacuums, people taking at once etc and in stores) my deaf ear gets tinnitus like crazy. Wind does this too...
Tinnitus is not just “ringing in the ears� here is a definition
http://en.wikipedia.org/wiki/Tinnitus
Probably the worst is the refrigerated isle at the grocery store.
Put in the ear-plug when you are in these environments.
I find when I do this I come home with less fatigue and wonky head.
Wonky head definition (2 threads)
http://anausa.org/forum/index.php?topic=5189.0
http://anausa.org/forum/index.php?topic=1612.0
Are you doing any physiotherapy? Some patients need this…
Have you ordered this book from the ANA yet?
Improving Balance Following Treatment for Acoustic Neuroma (AN8)
Explains the causes of balance disturbance and offers exercises that patients can perform with the goal of improving balance function.
Price: $3.00
It has some good suggestions in it. (I found the neck exercises a killer… I was so stiff the day after but they are working)
Here is the link
https://secure.baxinternet.com/~anausa/for_sale.html
What sort of work are you doing?
Are you around florescent lights etc all day… and background noise?
4 (Fellow Canadian)
-
Marcia: I'm right there with you. I'm also 6 months post and going to the exact same things you are. I feel like I'm not me anymore and don't enjoy much of what I used to. I went to the Mall today and thought I'd lose my mind before I could get out of there. I've more or less just become a homebody because I can't tollerate any place where there's a lot of people and a lot of noise. This is rough because my husband has a large extended family that likes to get together a lot. I skipped my step-daugher's baby shower today because I knew if would just make me tired and grumpy (shall I say more grumpy than usual).
I wish I could give you some helpful advice, but I haven't found any. The only thing I know for sure is that it does help to know you're not in this alone.
Linda in WV
-
Keep doing the vestibular exercises, also do the physical therapy stuff,even if your
not in PT.
I dont know if you know my story and i wont bore you with all the details.
I did have a 8cm left side and I have all the goodies that come with it.
This was in april and I am finally going back to work tomorrow.
If you keep doing your exercises things will one day catch you off guard , all these
things your dealing with will all of a sudden be a memory.
-
Satman Super duper trooper “8�. ;D
You are going back to work now? This is awesome to read? :)
I drove the car yesterday (10 ½ weeks post op) … and the family thought I was fine (i.e. I did not appear to be a drunk driver and my vertigo/balance symptoms have improved tenfold)
We need to throw a party… However I am not yet ready to chew raw carrots sticks – besides my nose is not yet twitching. I’ll bring soft honey glazed carrots … What are you going to bring? … (food purchased at ‘the mall’ is not permitted LOL)
Your progress is wonderful to read … keep it up…Super Hero “8�
Cheers,
4
-
WOW 4,
You are making progress by leaps and bounds. I'm so proud of my Canadian sister!!!! We are more than pretty faces aren't we? Let me know when the nose starts twitching and we will of a raw carrot party!!!
-
You 2 bring the carrots , I'll bring the Tequilla !
Carrots and tequilla ,sounds like a good mixture.
-
Hey - you guys may have a new drink going here: liquefy the carrots & you've got Teqarrot shots!!
-
Nancy,
That is hilarious!
4
P.S. When is the extreme MO day? ;)
(I love these characture buttons - it can do things my face can't yet - like wink ;) smile :) grin ;D on both sides... however I notice the tongue icon :P sticks out only to one side as mine still does ... someone knew what they were doing when they programmed these in ... ;D and probably had first hand experience of what facial palsy is all about...)
-
Hi, Marcia:
I'm sorry your recovery is not going as well as you would like. As you probably know, this is not uncommon with post-op AN patients. Time really does resolve many of these issues and the vestibular exercises help. So does walking. This I know from experience. If malls and such are a challenge, go there more often but for short periods to acclimate your mind and body to the environment. It's a good excuse for shopping. ;)
I would also suggest that you try not to focus on what you cannot do but on what you can. Look for small victories. Celebrate them. Remember that your body, especially your skull, is healing from a traumatic disturbance. Following my surgery, I had weird feelings in my skull/head that went on for months. My surgeon reassured me this was a good thing, as it showed my skull was healing. It was. As he promised, the tightness and other feelings (including random quick, sharp pains - not headaches) all eventually resolved and are long gone now, almost 18 months later. Yours will, too, I'm sure.
Having an acoustic neuroma tumor removed is always fraught with problems but they can be surmounted, and you will, I'm sure. Please stay connected here and let us know how you're doing. We care - and we understand. :)
Jim
-
Hi 4 - My surgery date is 11/20 - I can't wait!!!!!! It feels like just yesterday I was meeting with the surgeon, I'm so glad time has been moving quickly. It's been really hard quitting cigarettes for this, well, my lungs are happier!
-
Good luck with the smokes Nancy,I have'nt had a cig since I quit in march,
but I did find out I had A N in april. If I would have known that I would have never quit.
-
Nancy,
Good for you to quit smoking!
AN'ers have enough things going on- last thing you need are more toxins added. You need to keep the body as healthy as possible.
I know how difficult it is for people to quit ... I had an aunt that could not and she passed way from cancer about a year and a half ago...
Besides nicotine, I am sure, will inhibit nerve regeneration. Replace the cigarettes with power walking when you need stress release or a stimulant… you will be so much healthier (and happier) for it.
Keep moving forward,
4
P.S. I still cannot stand the taste of coffee here at 10+ weeks- I think not having caffeine is a good thing for me.
-
Marcia (and others),
Try to get through the stress of the high seas on this AN journey ship with as little drugs as possible (pharmaceutical, prescribed or otherwise)… reach out and talk to people who understand (AND ARE POSITIVE).
Marcia you wrote
“Haven't taken any prescriptions as of yet - kinda leary to due to side effects etc., Not sure if this would help disapate or just temporary - suggestions, comments etc much appreciated !�
If one feels they are heading into a “clinical depression� then drugs sometimes do have their place.
Clinical depression defined
http://en.wikipedia.org/wiki/Clinical_depression
(Interesting that they put a Van Gogh painting on that link, for illustration, being that Vincent Van Gogh suffered from debilitating “tinnitus� …and his depression ended his life. His paintings have since been carefully examined and it is well known that this artist worked with many very toxic art materials – lead paints included)
“Tinnitus� defined
http://en.wikipedia.org/wiki/Tinnitus
The key thing is to find people you can talk to (this ANA forum is good for that – even if some of us sailors feel drunk from simply walking in the wind)
Apparently these things should be avoided in tinnitus: caffeine, nicotine, salt and the consumption of alcohol
Resources that support this…
http://www.ncbi.nlm.nih.gov/sites/entrez?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=3374234
http://www.amazon.co.uk/Only-When-I-Eat-Tinnitus/dp/0951076906
http://www.ncbi.nlm.nih.gov/sites/entrez?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=9092280
http://www.ncbi.nlm.nih.gov/sites/entrez?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=8838550
I think the key is to carefully examine one’s lifestyle. Such obvious knowledge we all have: “a good nights sleep, consumer only nutritious foods, plenty of fresh air and exercise� we often neglect due to our hectic society of busy schedules. The key is when terribly tense moments arise try to find some wildly hysterical humor in the situation -if you can. Humor can be so therapeutic if used wisely and it does not get out-of-hand. Once thing I liked about the PCP (GP for those Canadian and European AN readers) doctor's office I chose is that they have this posted in their waiting room area, “Live Well, Laugh Often, Love Much�
I believe it is from this original author (1904)
"He has achieved success who has lived well, laughed often, and loved much."
â€â€Bessie Anderson Stanley
http://en.wikipedia.org/wiki/Bessie_Anderson_Stanley
Keep moving forward
4 :)
-
Wow - this forum is so supportive, thank you for the care,comments and suggestions. I went to a Baby Shower yesterday and was immediately overwhelmed and consumed with
the noise ( should have put the ear plug in prior) my head was racked with heaviness and then aggravated with pain, but what is strange is that we were at as Halloween party last week with more people and followed that with NHL Vancouver Canucks game (they lost :() and I faired fairly well at both of these. Yesterday was brutal, came home and was miserable. The Neuro Therapist has indicated to expose myself to the mall, grocery
store etc as helpful stimulation for the brain to adjust and re-wire. It has shown signs of improving and rebounding sooner when I leave that atmosphere. i take hour long power walks regularly during the week.
Is there on this forum a complete outline of the post-op symptoms and how and what us AN'ers have to deal with, overcome and endure while the re-wiring happens? This would be a great way to educate family etc as I do tend to get upset of late when talking of it all.
Thank you again !
Marcia
-
Marcia,
Its not only post-op, but post-radiation that causes side effects which I am still dealing with 23 months later. I have a bleeding disorder so many meds aren't good for me. Just 3 weeks ago I tried aleve. Two days ago I noticed alot of bruises(you know some of us AN'ers bump into things constantly) and my fingers hurt whenever I touched anything. So off the aleve. It did help my headaches and brain spaasms though. I worked at Sears in the mall, so you can imagine how that felt. Earplugs of any kind give me earaches, from the pressure. But the bright side I have to look at is every side effect is liveable. I am still here enjoying my grandkids, and the world we live in. I do miss my daily glass of wine though.
mema
-
Hi,
I am eight months post retrosigmoid for 2.7x4cm left side AN described as aggressive and nasty. Facial paralysis followed by headaches were worst side effects of surgery. Headaches remain however they respond well to ibuprofen and to naproxen-were very bad for a time and now seem to be less frequent although quite intense. It is only this month that facial movement is starting to return-preceded by some twitching, so this is very exciting. I have also been having accupuncture treatments which have been very helpful for facial issues and general energy. I have a gold weight in my left eye which allows closure although dry eye is still a very active problem. BaLance and walking are not yet completely normal but well within the good functioning range. It has been a long haul and provided much challenge. I am back to slow jogging with my dog and have gone back to work. I am in sales and so inform people of my condition before beginning presentation. Everyone is understanding and has their own medical sagas to relate. Oh yes, double vision is gone-one of the scary symptoms pre op. Surgery at Duke University Hospital with Dr. Allan Friedman 3/07/07.
He did well, although I had my doubts the first few months. Patience is truly a virtue with AN recovery. There is no choice!
-
AG,
Your post is good for me to read. I am just approaching month #3 - post op. I too was an RS & 4cm…
I have been feeling “the blues� the latter part of this week. (I guess we all do at various times of this AN journey huh?)
My facial palsy not showing much improvement since week #4… has me blue.
I just drove at dusk and it wiped me out and made me SO nervous to be on the road before dark. I had also just done the “mall scene� with my teenager with my new SSD. (Oy ya ya) Exhaustion … nothing worse than losing you kid in the store, calling out their name and not being able to figure out where the reply is coming from. My kids are getting better at babysitting me, their mom, in the stores.
My kids just want their old mom back as she was … and I am not sure if this is ever going to happen.
You are 5 months ahead of me… perhaps yours is THE story I needed to read today.
Thanks for sharing.
4
-
:D Hi Marcia--I had a 1 cm rt AN removed in 2001 via retrosigmoid suboccipital approach--during this approach the surgeon had to move over my brain to get to the (bony canal to drill) AN--I have read due to this some people have had cognitive problems post surgery--I can't say I ever have altho I can not and will not tolerate stress (mostly job-related) altho that burn-out was coming on at the time of surgery anyway... I have switched careers 5 years ago and love my job!! When you are over tired it's normal (I think) to have cognitive problems. Actually I have ALWAYS had what I call "mind mush"--meaning when I am tired I don't think well at all and it's usually after a long day... I actually didn't return to my then stressful job for 3 1/2 months as I was still fatigued from surgery. I've read thru my research tha Dr Friedman is one of the best so I'm sure you've had great follow-up--just be patient and you will be fine. We have to remember hat some things will never be the same but we've had brain surgery and survived and thank goodness!!I get most discouraged with loss of directional hearing--but everyone knows I have that deficit now. I have had continuing problems w/neck muslce tightness and now spasms causing headaches but need to see a massage specialist... I had 30 FSR treatment recently at Mass Gen in Boston MA as th AN was not totally removed in 2001--I have had no problems post radiation so I am doing okay!!!
Take care, Mary from MA ::)
-
I ` had surgery 18 months ago. I still have after effects of it all. I have pain in my head and had stiff neck. I finally went to the chirropractor. It did not resolve all my aches and pains, but it did help the stiffness in my neck. I think the fact that i can only really sleep on one side, has put my body out of wack as well as the surgery and tension and life after it. I started to go to the chiropractor about 10 months after my surgery. I was glad that I did. I have balance issues but they got much better over time. I have headaches now and again, but they too got better, either time or due to chiro. I know I go once a month. I did have an x-ray first so the chiropractor knew what went on in my surgery. She only adjusts to a certain point in the spine for she doesn't want to move somethng that is foreign. It is frustrating at times and the hearing loss took about the same amount of time to get used too. I still have ringing , but it is not something I even notice any more. good luck. C
-
Cheryl,
Wow I'm not the only one who can sleep on only one side. Since my AN my left side has all my problems including hearing and feeling my heart beat. I also have costochondritius on my left side. I started back with a chiropractor about 1 month ago. But now I'm having a bleeding problem and until that gets straight I can't go.
mema
-
(slight off-topic for mema: Hey mema, costrocondritis stinks! Been there too much, anti-inflammatories killed my GI that I took to help the cause and it's a -- rhymes with glitch -- to try to treat and resolve. Hope you feel better. I know it's a bugger. Phyl)
-
Marcia, I agree with Jim. Small victories should be celebrated. It takes time. I started walking two months post op and was back in karate 3 months post op. I believe exercise really helps with balance and even to relieve stress. Totally agree with you loud places are not fun. I don't enjoy going out with a large group as I miss half of what folks say and the noise drives me crazy. Shopping malls are the pits! However, I only do that once in a while so I tolerate it. What I enjoy the most is when I am outside by myself listening to the birds. That sound or lack of sound is very peaceful.
I take Aleve to help with the fullness in my head and take aspirin when I start to get any sharp pains in my head. I've been very blessed not to have much pain since my surgery. However, I make sure I have those pills with me all the time. I only take two every two weeks or so. However, I make sure I have them with me at all times.
Hang in there, time does help with the healing process!