6 months post-op - symptoms so frustrating

[mch]

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

[mema]

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

[ag0923]

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!

[4cm in Pacific Northwest]

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 sceneâ€? 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

[MLB57]

  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

[Cheryl]

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

[mema]

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

[ppearl214]

(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)

[TP]

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!