Searching for some feedback please.

[rbrij]

I am from Australia and I have already had the operation. The operation was on 22/6/07 and since then I have been recovering slowly. The tumour was 3.7 cm in right ear pressing against the brainstem. The surgeon explained me that the nerves are intact but as he had to separate the tumour in the middle they could be damaged re scraping etc.
Though things are slowly getting better following are still to see some recovery:
1  Right eyebrow and cheek smiling muscle: They are still collapsed and awaiting some response.
2  Hearing: In right ear there is no hearing.  I could hear well from my left ear but the sound has a tunnel effect similar to blocked ear. I wonder if this is tied up with balancing and how long will it roughly take to recover.
3  I like walking and I have gone for walks for 30min to one hour. Is this ok or I should not do that especially long walks.

I have read lots of discussions and it seems the forum has lot of experience. Could I please ask for some feedback on the issues I raised?

Thank you

[Desilu]

Hi,

Everyone heals at a different rate. It all takes time and don't be discouraged. I was back to work 8 weeks after my surgery. Others are still seeing improvement 1 year after surgery. The nerves take time to heal. You may want to ask your doctor if he can suggest any kind of therapy for your facial nerve.  Walking is very good for you. If your doctor severed your balance nerve like they did with me, walking will definitly help you. The hearing may never come back but there are no guarantees when you have surgery. Keep a positive attitude and take one day at a time, it will get better.  Ann

[nancyann]

Hi rbrij:   As far as facial nerve coming back, since yours was not cut but stretched/damaged, you will most likely get movement back, it will just take time.  some who've had the same problem you're facing started seeing movement up to 1 1/2 - 2 years or more after surgery.  Nerve coming back takes the longest time for healing, so don't dismay.  I was told the eye area is usually the last area to come back, sometimes it may not.   As far as walking, like Desilu said, it's a good thing.  Your body will let you know if you over-do it.  You didn't mention if your eye is dry but if it is I'm sure the docs told you to keep it well lubricated - I put lubricant in about every 2 hours (eye drops aren't strong enough for me) - this helps prevent corneal problems.  If you don't have eye issues, then thank God !!   SSD (single sided deafness) will take some getting use to.  Just about all of us end up with constant tinnitus (ringing in the ear on the AN side), that takes getting use to also.   I wish you all the best my friend,  Nancy
ps:  if you look under Facial Issues, there's also alot of info there too !!

[Gennysmom]

Hi there!  I'm right sided as well, about 3.4 cm at time of surgery.  What approach did you have?  I can't speak to the "tunnel" hearing, but who knows, it could just be that your brain is overwhelmed after surgery....did you have hearing in your right ear before surgery?  As for the right facial muscles.....mine came out of surgery at 95% and fell soon thereafter....potentially due to the post surgical swelling...and have spent the better part of a year coming back.  I'd say I'm at about 65% back.  I have heard that nerves can make good progress on regeneration for about 24 months....so unfortunately patience is going to have to factor in.  Some come back quickly, some not so much.  Keep your face relaxed and massage any sore spots.  As for the walking....that's good therapy....not too much for you right now.  Your body will let you know if it's too much....do what you can, just don't push too too hard.   Take care and keep us updated!!!!  There's other Aussies on this board as well, keep an eye out for them!

Kathleen

[jimmy r]

I am 4 weeks post op - 7 hrs of surgery retro approach. I am in a funny faze. too tired to work but not tired enough to sleep during the day. I take 5 minute power naps. i did attemt to work in my restaurant today. 2 hours and that was all i could take.  I was having trouble sleeping at night too so i stopped the second dose of steroids and then quit them all together. It's nice having the extra energy but i definetly sleep better without them. i also started sleeping better when i got off the pain meds and switched to advil and tylenol. You will get better and yes it is frustrating not having energy.

[Yvette]

Hey there, welcome! My cheek, lip and eye on the An side did lots of funny things in the weeks after surgery. My docs said to think of it as the nerves having been smushed for months by the tumor, are finally trying to stretch their legs and regain their shape. My cheek, lip and eye would take turns having a twitchy day, then one or the other would have a paralized day, then tingly etc. Hang in there it gets better. Take it easy on those walks! I tried too much too soon, and paid for it! What ever you feel sure you can do-do a little less! Best wishes, keep us posted! Yvette

[jlamborn]

Don't be discouraged yet about your eyebrow / cheek weakness.  I was that exact same way after my translab in December.  My eyes blinked at different rates, and I couldn't even rinse my mouth out after brushing my teeth without holding the corner of my mouth closed.  I am 7 months post-op now and those issues have almost completely gone.  What everyone says is so true; it just takes some time for the nerve to heal and get back to normal. 

[ram]

Hi All,

2.5x2.5x3 cm AN diagnosed and partially removed in July 2001, treated with Gamma knife in Oct 2001. Surgery resulted in hearing loss and facial palsy on tumor side. Also I was in hospital for 40 days due to complications.

Now (from last 2 months in 2007 that is after 6 years) I am experiencing balance issues and sporadic intense headache at various parts of the head, which is more at tumor location. Also, sometimes I get pain in the ears. My recent MRI reveals build up of CSF (like a balloon) which is pressing against brain stem. CSF is enclosed in scar tissues.

I live in Seattle; my doc has suggested me to have shunt implanted to drain out the excess fluid.
 
My questions:

1) Is there any alternative to the shunt option, I am bit worried to have foreign material inside my body.

2) Is it possible to create just an opening in the membrane of balloon, so that CSF build up inside flows out and naturally replenishes?

3) Also, can some one suggest good doc in Seattle area for the surgery.

Thanks for your time.

RAM

[Omaschwannoma]

Wow 6 years post and new issues tells me anything is possible post treatment.  The answers to your questions are best answered by "the experts" as they will be able to explain better why you don't want to "just cut the sac."  I imagine if it were that easy they would've proposed that to you instead of a drainage tube. 

I do hope you find relief as knowing more issues to deal with for you after the fact can be stressful.  I would love to have that day when I am NOT reminded of my AN--perhaps wishful thinking, but a girl can dream can't she?! 

[Joef]

A lot of people here have the shunt "installed" .. and its really not a big deal

I'm not a Dr. but I dont think you can just make a hole in the brain cavity... risk of infection , un-controlled leaks and *death* is too great...

[Raydean]

Hi ram

At the top of my list for a  neurosurgeon in the Seattle area woulld be Dr. Timothy Steege.  His main office is in the Heath Building next to Swedish Hosp, but he also has other offices in Ballard and Bremerton.  If the main office is short of openings, try one of his other offices.

Dr Steege  is highly experienced, listens to the patient and explains things in a way that's understood.
If a family member or myself needed a neurosurgeon he'd be the first one that I'd call.  I know that he's one of the doctor's that's called in on the complicated cases.

Joef is right as far as neurosurgeries go, it's not considered a big deal, but you do want a doctor that is experienced in placement of the shunts.  No one wants another brain surgery, but with a shunt you'll notice improvement in the areas that you mention rather quickly.  The shunt itself is not noticeable to the general public, no one would know unless you tell them.

Your Doctor will be able to explain things better, but please know that it isn't as big of a procedure as what you have all ready had.  The shunt not only saved my husband's life, by controlling the hydro  problems it added to his quality of life. The headaches, (guessing back of the head and behind the eyes, pretty intense)  nausea, memory and balance improved. 


Please please keep us updated, and feel free to contact me directly.

Best to you
Raydean