Starting to freak out

[katmac36]

Hi everyone! As some of you know I was diagnosed a few weeks ago. I have talked to Dr. Luxford at HEI and really like him. My surgery is scheduled for September 8th at HEI (Translab) . I have been doing really well with all of this so far. Trying to find a little humor in my situation. Now the freak out begins!! The unknown is scaring the you know what out of me. I know everyone is different, but can any of you tell me a little about what to expect post-op. I am not as much concerned about my hospital/California stay as much as I am about when I get home. I have 3 very small children (ages 5, 2, 7 months). How long do the balance issues last? How long will I need to use a cane or other assistive device? How long before I can drive? Any quick stories about the first month or so of recovery would be appreciated. What are the first few days post-op like (I need to warn my husband)    I have so many things to think about and plan for I am getting overwhelmed. I put on a very brave face for others, but I am getting very nervous.  Thanks!!

[Rivergirl]

Sorry about your upcoming surgery.  I am in my fifties and just had the surgery, you sound young and obviously in much better shape after caring for 3 children.  I do think you will recovery at a better pace than I did.  The first few days are rough, lots of tubes, pain, medicine but as each day gets better those memories fade.  My husband helped with everything after I came home, he helped with showers ( the first time I said I could do it myself I flooded the bathroom lol).  The balance thing is amazing how your other senses and other balance nerve learn quickly to compensate so the earlier you move after surgery the quicker that returns.  Some people have horror stories and some have marvelous stories but I think with a good attitude and good health going in you should do just fine.  Stay active (sure you will with the little ones) eat well and you will be ahead of the game for sure.  I will say I am 4 weeks post op, feel almost like my old self and finally I can really appreciate that the tumor is GONE and that feels wonderful.  Best of luck with your upcoming surgery.

[Syl]

katmac36:

I stayed with my sister & her family for 2 weeks after my surgery. It was great having her 3 teenagers around to help me get to my appointments & go for walks. I was very dizzy & off balance for the first few days. I held on to furniture & walls to help get around the house, & that allowed me to put away my walker after 2 days. I used a cane for about 6 weeks, around the time I started driving again. I didn't dare go up the stairs that first week home. I used a spa bench in the shower for the first week but managed to shower on my own. After that I was able to shower by holding on to the wall when I closed my eyes.

I found that once I was able to establish a routine with my walks, my balance improved a great deal.

I tried so hard to rest & nap during the day, but even now, 3 yrs post-op I have a difficult time napping. Sleeping straight thru the night was impossible for a long time--about 2 years.

Good luck.

Syl

[Jim Scott]

Hi, Katie ~

You're right about the unknown factor in AN surgery being a source of stress, otherwise known as 'freaking out'.  If you read through the various accounts of other AN patients surgery/recovery, you'll see a fairly wide range of experiences.  In my case, I was extremely fortunate to not have any headaches or serious balance issues post-op, although the first 48 hours following my surgery (retrosigmoid) I spent sleeping, napping and sleeping some more.  Not much appetite, either - but I 'came around' by Day 3.  Once discharged (5th day, post-op) I pushed through whatever minor issues I had because I was determined to get back to normalcy.  Because my recovery went so well, my usually cautious neurosurgeon (with 30 years of AN surgery experience)  gave me permission to drive a bit less than 2 weeks after my surgery.  I took advantage of that and quickly conquered a slight problem I had turning my head to change lanes on the interstate (nothing dangerous).  I did a lot of walking and got physically active as soon as it was feasible (approximately 2 weeks, post-op).  I had borrowed a tripod-based cane 'just in case' but I never needed it.  However, I hasten to add that this is simply one person's experience, albeit a good one.  The other side of the coin is quite different.  You can read accounts of the problems some AN post-op patients struggle with on these forums, so I won't list all the possible negative things that could occur.  Frankly, stressing out over 'what if' isn't going to change a thing.  I went into my surgery with full confidence in my very experienced and compassionate neurosurgeon.  To be honest, I was also the grateful recipient of many prayers and that gave me added confidence in my surgery outcome.  I'm happy to report that my faith in both prayer and my doctor were amply rewarded.  Obviously, no one can credibly predict exactly what will happen during and after your surgery because too many variables are involved.  However, I hope you'll try to surmount your fears and remain positive as The Big Day approaches.  Tell your husband that you'll need his support, both for the physical stuff and the emotional, too.  That's important.  With the help of your spouse, a good attitude and excellent doctors, you should do well, Katie.  Of course, your friends here on the ANA discussion forums will be rooting (and praying) for you, especially as September 8th rolls around (which it inevitably will).  I don't know if what I've offered you is useful but I trust that it may be.  Now, take deep breaths and exhale s-l-o-w-l-y.  That's right!  I'll bet you can feel the stress melting away, right?  Good!     

Jim   

[mk]

Hi Katie,

sorry you have to go through this, but you will be in great hands at HEI. As you will see here, everyone has different stories. I can understand your anxiety having 3 little ones. Balance can be a major problem. It mainly depends on how much vestibular function you have left. You didn't mention the size of your AN. Have you had a VNG (vestibular) test? The results of this test can be a good predictor of how bad (or good) your balance will be after surgery. My test prior to surgery showed that I had already lost 90% of my vestibular function on the affected side. This meant that the other side had already compensated. And indeed I didn't have any balance problems post-op. I used a walker in the hospital up to days 3-4, mostly though because I felt weak. Afterwards I was able to walk on my own, and my balance has been pretty good. I started driving 6 weeks after surgery, not because I was dizzy, but because my neck was sore and didn't have full mobility.

Given the variety of issues that can come up immediately after surgery, I would strongly advise you to arrange to have help at home, at least for a month post-op. Little ones can be very  busy and you will want to focus on yourself and your recovery. My mother in law stayed with us for two months, and she has been a great help. As for hubby, do warn him about the hearing loss (since you will have translab), and that you may be weak and exhausted at the beginning. My mom was with me in the hospital and initially she was very worried that I couldn't keep my eyes open the first two days (had horrible nystagmus).
Keep reading (but don't overdo it), there is a wealth of information here.

Marianna

[psmix]

Hi Katie,

I had translab at HEI in February. One thing they'll tell you is that you shouldn't bend over or lift anything heavy for a month. With small kids and an infant, you'll need help around the house! I echo what others have said about balance. Your brain will compensate soon enough if it hasn't already, so walking and being as active as you can as soon as you can will help. Somewhere on this site I found some balance exercises that I did pre-surgery, and I think they helped. I have also done yoga off and on for a number of years, and I think that really helped my balance, too.

One thing that I didn't expect (though I've seen someone else mention it in this thread) was the nystagmus and double vision the first few weeks. It was about three days before I could bare to have my eyes open for more than a few minutes. Combined with the residual anesthesia and pain meds, I pretty much slept straight through the first 3-4 days. My eyes gradually adjusted and were almost back to normal after a few weeks.

The loss of hearing in one ear was a little bit harder to adjust to than I thought it would be. At first it feels like cotton in your ears, but that sensation will gradually go away. I also heard "white noise" (a version of tinnitus, I think) a lot at the beginning. It's diminished quite a bit now. I've learned to position myself so that my "good ear" is toward others as much as possible. Noisy environments are difficult. The thing I miss the most is that live music goes from 3-D to 2-D. That really struck me at my son's first band concert post surgery. I missed not having the surround-sound sensation. Now, I wouldn't know the difference except that I remember that first disappointment. Not being able to identify where a sound is coming from is comical more than anything. I frequently turn the wrong way, or end up turning in circles trying to identify where the person is that called my name! (This could be a challenge for you if you're trying to check on small kids!)

Most of the other recovery really depends on a lot of factors. I've actually been through this twice now, with different recovery issues each time. What I've realized is that frame of mind makes a HUGE difference! If you can remember that you're still the same person, and get back into as much of your normal routine as soon as possible, I think you'll start feeling like your old self that much quicker.

Best of luck to you!
Pam

[Kaybo]

Hi Katie!

There is not much I can add at this point, but that I was younger (25) when I had my surgery so probably more your age.  I was overweight (life story!) but in really good shape other than that.  I did not have any walking aid leaving the hospital - except my husband's arm!!  I left the walker there!  It was slow going and with assistance at first, but I had a few other issues too!     I know you will do great!  I'll just echo about trying to LIFT a baby - you will need a little help at first!!

We are here for you so let us help you with any questions or thoughts you might have!

K   

[cin605]

I have no small children so i can not chime in on that.
You may want to warn you husband about the not so wonderful side effects of steroids.....Most will have to take these after surgery.
They can make you pretty straight forward and bossy.My sister said you have a very dry tone to your voice...i said well maybe I'll just stop talking then.Ask Hubby ahead of time to please be very patient.
Try not to over do anything or it will catch up to you later in the day.
As others said vision is usually off...do not try and walk in the dark..even to the bathroom..I went to go into my room and ended up almost falling in the bathtub.
Freeze easy meals ahead of time and you will crazy clean before your surgery.
Attivan helps for all thee anxiety.
Hope this helps a little.
Hugs!Cindy

[Mei Mei]

You've come to the right place to ask all these questions and I see you said:

"The unknown is scaring the you know what out of me"

Look at Jim Scott's signature that helps:  "Fear always springs from ignorance"   Ralph Waldo Emerson

My first three days post op were the worst and everyone said that to me.    There were all kinds of weird things happening, like the room was upside down and I didn't know what to do about it.    My throat was sore from the intubation so they gave me ice cream and pops to swallow once I was cleared for eating.    All I wanted was ice for the throat.    Then I had this BIG headache so kept ringing the bell for more meds to keep ahead of it.   I felt fine at home.   Had the stitches removed a week later and allowed to shampoo all that blood in my hair after 10 days.    I was allowed to drive after two weeks.   My headaches persisted until a few months ago.   The neurologist gave me all kinds of horrible medicine and then referred me to get occipital nerve blocks.   They didn't work for me but accupuncture and Myofacial Release Therapy brought me back to life.   Three of my occipital nerves were damaged so I had to have them cut in May.   I'm sure this won't happen to you.   You are in the BEST of HANDS!   Promise!
Mei Mei

[ksiwek]

I think the earlier posts pretty much cover it...but I just want to echo some of the comments about needing help with the kiddos.  My son was 2 weeks old last year when I had my translab.  So when we flew home from LA he was 1 month old.  My mom stayed with us for about 4 months after.  I was a new mom, had a large tumor, c-section, etc.  It took me a longer than average time to be able to drive again as well.  So I had a lot going on!  You should not be lifting more than a gallon of milk (per Dr Schwartz at HEI) for at least a month.  You will also need to get your rest to recover more quickly.  Allow others to help you manage the house, kids and meals.  Perhaps make some things now that you can freeze and throw in the oven later.  Best advice given to me was to accept and to ask for help.  The more you take care of yourself in the beginning the quicker the recovery...the quicker you get back to chasing your kids    Young kids, as you know, take a lot of physical and mental energy for anyone (chasing new walkers for example).  So take naps, if you can, without guilt!

Once I got home, I went for early morning walks every day (Starbucks a mile down the road was my reward  )to work on my balance, stamina, eye stabilization, etc.  That would get you some time with kids while working on your recovery!  Send me a message if you want to talk more in detail.

Best of luck to you...I am sending prayers your way!  Kris