surgery 11/25/08 balance questions

[kzanana]

Hello all:
  I had my surgery 11/25/08, 4 weeks tomorrow. My head is feeling like the hatchet the doc used to open the head has finally been removed  but still have constant right side head pain. I know this is common. I had to cough yesterday and thought I was going to die. My husband made me laugh last night and I could have shot him. I will say, even though it hurt it felt good to laugh.
    I have a few question for those of you that have had to have your head opened for this surgery. I had no idea I was going to be put into a halo, back board the bolted to a table. Thank goodness I was already under when that happened.I didn't want to ask to many questions I guess, because I really didn't want to know. I made the decison to take it out because it was starting to cause facial nerve problems. My hearing loss was already at 60% and I knew that couldn't be saved and would be deaf in the right ear already.
    I have been seeing a Brain and Balance therapist for 3 weeks now. My tumor was actually growing in my balance nerve so they had to take that too. They also got all of my tumor and it was benign. My questions are, How long after surgery was your balance messed up. I feel like I am sea sick on a big boat all the time, without the vomiting anymore, thank goodness. I have been told 2-4 months before I will be at a "new" normal, but that it will happen. It seems to be going so slow. My head feels  clogged up and fuzzy. Not a very professional way to put it but I know if you have had this surgery you will understand. My incesion is from the top of my ear and follows the ear down to about 1" into my neck.
    The second question is, has anyone hearing come back in the affected ear
             Thank you, in Seattle

[Pooter]

kzanana,

I had my surgery in May 2008.  What I have found is that things take a painstakingly slow time to heal.  In "regular" sickness, they talk in terms of days to get better, while with this they talk in terms of months.  While I didn't have severe balance issues during pre and post-surgery to deal with, I can say that things just take time. 

I'm confident that given some time, things will get to be your "new normal".  Unfortunately, it just takes time.  Now, there are things you can do to help adjust faster.  Take walks.  "Shake your head" slowly (at first) and try to build up speed over time.  At first, you'll probably get VERY dizzy.  But, you're forcing your body to re-assert it's balance mechanisms that are in place.  That's what you want. 

Speaking from experience, the first few months post-surgery are no fun.  But, as time goes on and you have little victories along the way, you'll get more confident.  I'm almost 8 months post-op and there are still things that bother me, but they are fewer than what bothered me within the first few months.  Be patient.  It's not going to change overnight.  Slow and steady progress is what you're seeking.

I'm very sorry about your AN diagnosis, but you've found this forum that is full of us who have been there.  You are very welcome here and are welcome to ask further questions as they arise or just plain gritch about something.  We all have our moments and we'll definitely help in any way we can.

With regards to your second question, I think there are several who have "saved" some hearing after treatment.  To my knowledge, what's gone pre-surgery is gone post-surgery also.  As the saying goes, once it's gone it's gone for good, unfortuately.  I'm personally SSD (single-sided dead) on the affected side, so it's all gone on that side for good.  It's not as bad as it seems.  Although, I am looking into TransEar or BAHA (hearing aides) to see if they might be of help.

Regards,

Brian

[JohnnyDiaz]

I can totally relate. When I would sneeze or cough it would almost create the headache. I can say for me it was about a month and a half and I started to actually feel great. I guess you take for granted feeling good. But I can say that I now almost completely enjoy the feeling of normalness.

I had 3 surgeries overall in 2 weeks and my Dr. said that it would be months to get back to speed. But it has been 2 months and I feel great. It may not seem like you will feel normal but keep up your optimism and one day you will get there. By the way the Physical Therapy really helped even though it was not fun at all. I asked my Surgeon when would the pain stop and he smiled and said "when it stops" :-).  Hang in there.

[Jim Scott]

Hi, Kzanana, and welcome to the website you probably wish you didn't have a reason to visit.  However, now that you're here, I hope we can be of some assistance. 

I fully understand your symptoms and support your decision to undergo surgery (as I did) but regret that you're experiencing these discomforts and flat-out pain. 

Although Brian ('Pooter') answered your questions, I'll mention that not every AN surgery patient (post-op) has the same issues.  This is partly due to the fairly wide variance in each patient's condition (tumor size and exact location) as well as the modalities employed by the surgeon and his or her team.  I had no incidences of post-op head pain and was never informed as to whether my head was secured with a halo or if I was bolted to a table during surgery.  Because I didn't experience post-op headaches, head or muscle pain, I never asked.  However, now, I'm a bit curious.

Surgically removing the balance nerve can cause some discomfort and a feeling of disorientation but as your brain adjusts to this deficit and learns to use the input from your 'good' side, you'll feel better.  Some folks do recover at least some level of hearing, post-op, assuming the hearing nerve has not been cut or too severely compromised by the AN.  Even so, the vast majority, as Pooter stated, do not recover hearing that was previously lost.  I'm one of that vast majority and, like many others, I cope quite well with my SSD (Single Sided Deafness).  However, there are some ingenious appliances available that can help your hearing by transferring sound from your skull to your 'good' ear, enhancing your ability to hear.  They can be expensive and sometimes you have to fight your insurance company to cover their cost but those who use them seem to be very satisfied, so that remains an option for your SSD. 

I would suggest consulting with your surgeon and/or PCP regarding the pain and with an audiologist for more information about BAHA (Bone Anchored Hearing Aids) units.  I hope and will pray that your pain ceases soon and that your recovery continues apace. 

Jim

[Syl]

kzanana:

I had retrosig surgery June 16, 2008--6 months ago, which involved the full removal of that vestibular nerve. My balance is not 100% yet--don't know that it will ever be. But I am still making progress. It was 6 wks after surgery that I felt confident enough to start driving again--only locally of course. During those six weeks a normal car ride felt like I was on a roller coaster and that my shock absorbers were not working. Luckily, the roller coaster rides were never accompanied by nausea. It took another couple of months before I drove myself out of town.

At that same time, I decided that I would no longer use a cane for walking. I've gone to physical therapy for vestibular rehab and that has helped. After 4 sessions, the PT said I was doing so well that she didn't think I needed her anymore. She did stress that I needed to continue the vestibular exercises on my own. The exercises do help a great deal.

At six months post-op I still walk a crooked line in poor light and when I'm tired. But I do continue to see improvement in my balance. Just a few days ago I was doing some work that involved turning to my left and grabbing a box, then handing it over to the right. I did this for 2.5 hrs without stopping for more than 5 minutes at a time. I was tired afterwards, but I was so amazed and excited about being able to do something that could have easily made me really dizzy a few weeks earlier.

As for my hearing, I think it did improve slightly since my surgery. Like Pooter mentioned, what was gone before surgery is lost for good. The damage that the tumor does to the hearing nerve is not reversible. What was lost during the surgery may improve after the swelling goes down. But I'm not holding my breath. At this point, I'm looking forward to testing out my Resound Ziga hearing aid.

To this day, coughing and sneezing still can be very painful, but that happens less frequently. I've done a good job of not getting sick this winter. Hope it lasts.

Be patient. Be proactive. Do what you can to help the healing along. We all heal differently, but it does get better.

Good luck.

Syl

[cherrypiper]

oh yes ...........my hearing was already gone over on my AN side............it wasn't coming back for me.

Balance ? oh yeah BIG issue........i was running into walls at nite even though i tried to get out of the way. i couldn't function too well at nite at all. Balance exercises they gave me b4 my surgery were useless . i had none.

now, at 6 month checkup balance was a little better.

at my just past 1 year check  up my balance had improved. and yes i think we all have a halo. those dents hurt more then the surgery site for me.

now balance is only a problem when i get tired and at nite, together. i still lean to the left. AN was on rt. Dr explained it this way to me

You are operating on only 1 balance center now, so you tilt the other way. the more tired you get, the less the brain can compensate. so you list to the side away from your AN....

which also explains some of my vision problems, the more i use my eye, which is like all day, the more my brain tries to make it read at same level as the other. brain gets tired . by the end of the day. i am tired. somewhat less reasoning, and for sure less balanced.

this has even shown up at nite when i drive. i "see" me leaning to the left side of the road , still in my lane, but certainly not in the center........... takes some getting used to.

and new coping skills too........