Recovery Experience

[amel]

Hello.  I underwent retrosigmoid surgery for a 1 cm vestibular schwannoma on my right side about 2-1/2 weeks ago.  I ended up back in the hospital 3 days after surgery for csf leaks from my right nostril.  I spent 5 days in the hospital and have now not had any leaks for exactly 1 week.

First of all, I've been bumped from my follow-up appointment with my surgeon twice, and it seems that if I don't ask him the right questions, I won't get much recovery guidance.  I've only been told to remain on bed rest and not lift anything more than 10 lbs.

I'm hoping someone can give me some first-hand advice on how long to take it easy, how to deal with this annoying tinnitus and does the hearing ever come back on its own?  I can not hear anything out of my right ear.  Do you usually get another hearing test after surgery? 

I've found myself trying to do basic housework, but I'm not sure what's too much at this early stage.  I do not want to end up back in the hospital.  The second visit was bad.  After having a tube put into my spine for csf drainage, I did nothing but vomit.  Then one day, the nurse had the drainage bag on the ground and I drained too quickly.  I was drenched with sweat and went in and out of consciousness.  Thank goodness my surgeon was there.  They called him out of surgery and he took the tubes out.  The leakage eventually stopped on its own after days of doing nothing but sitting upright.

I'd appreciate your response.

[Boppie]

Hi, I read your post.  Welcome to this forum.  You will find friendly help here.  I am glad you are home and past the worst part of your treatment.  I remember feeling lonely in the first few days and weeks of my recovery.  Things will get much better.  By the end of the first month you will feel a lot better.  Things move quickly when the incision is healed an your body gets straightened out from the drugs and their effect on you. 

Usually a post op follow up is done around 4 to 6 weeks.  Staying at home and at rest right now is important.  That doesn't mean laying flat in bed but staying out of exciting or strenuous activites.  Try not to do the kind of chores which require bending, scrubbing, and pushing things.  Wet clothes should only be handled and lifted a few at a time.  You really don't want to lift much at all except grooming items, and of course the good old silverware to eat well.  Lifting things taxes your incision.  Continue to take the stool softeners like Dulcolax to prevent straining.  Straining or pushing hard can force intracranial pressure on your incision.  You are recovering from anesthetic and this takes time to get it flushed out of the body.  Drink water and other light things.    I don't know how much your hearing nerve was impacted by the surgery, but only time can tell.  I don't think they'd do a hearing test so soon after surgery.  You will know if the hearing kicks in. 

Initially I was quite bothered by the newly acquired tinnitus that seemed rather loud to me.  I've adjusted.  It seems that tinnitus is part of the AN experience and it stays with most of us.  I found listening to the TV or radio on low sound in the beginning was all I could tolerate.  But since you are resting a lot TV is about all there is.  Heavy reading is probably not easy to do right now either.  There are some interesting threads to search on this forum and that might entertain you.  Search, type in 'recovery' or read in the Post Op Folder...lots of encouraging words in there.  Several posters in the 'Archives' topics speak about CSF leaks and they might have some info for you. 

Most of us did word search puzzles, simple crosswords, and sleeping.  The body heals best when it rests. 

Sometimes just talking for brief periods on the phone can help with the boredom.  I know you want to be out and about but you really have to rest for a few more weeks.  The body recovers rapidly once it kicks that anesthetic.  Can you sit in the shade outdoors for part of your day?  Remember to stay hydrated.

Keep in touch with us and you'll get plenty or responses.  People here are extremely friendly and helpful.  Lots of posts come in on the weekend and daily evening hours.

[jtd71465]

I had the same surgery way back in January of 2007...WOW where has the time gone?  I'm of to play golf this morning but later this afternoon I will send you my Dr instructions that he gave me after surgery regarding do's and don'ts.  Keep the faith....I didn't think I would be playing golf again let alone this year...talk to you later.

Joe-

[nancyann]

Hi Amel & welcome:  Glad you're home now recuperating.  Well, Boppie summed it up beautifully, & with Joe sending you instructions, you'll be okay.  I wasn't doing much at 2 1/2 weeks out - just taking walks, going a little further each day, sleeping ALOT, dealing with headaches that were slowly but surely lessening.  I remember I was on Colace 100mg twice a day for 6 weeks to prevent straining when going to the bathroom.  It's very important (as Boppie said) not to strain, lift heavy things.   Just take it easy my friend, your body will let you know what it needs.   Alot of hair fell out after my 1st shampoo & for awhile after that, but it subsided.  I didn't go back to work for 2 months, & then it was part time for 2 weeks.  I started driving 3 weeks post op, but everyone is different re: recovery.
Keep a peaceful heart, recovery takes time,   Nancy

[Obita]

Hi Amel:

Welcome!! 

I didn't do a whole lot until about week 4.  Then, I did a little visiting people just to get out of the house.  I hate to shop, but I went shopping for something to do.  Just to the strip malls, so I didn't have to walk too far.  Listen to your body.  If you start getting tired, stop what you are doing and go rest.  Once I got back to the rat race at work, I wondered why I didn't enjoy doing nothing for those two months???

My surgery was in May so I lucked out there.  At least I could sit outside, like Boppie suggested.  I fell asleep many times out there. 

Your hearing might not come back until the swelling goes down and the tinnitus, you will get used to it.  Most days, I don't even give it a thought.  I think I called my surgeon's nurse two or three times post-op with questions.  You and your insurance company paid him lots of money - call them if you have questions.

Good luck to you and take it slow, Kathy

[amel]

Thank you everyone for the tips.  I am now 4 weeks post op and just read the replies for the first time.  I guess I'm not too sure how to navigate around the forum. 

So, from my understanding the tinnitus is there and people just get used to it?  I guess time should help with that.  I'm still taking codeine/tylenol for the headaches and numbness on the surgery side.  I find that I only feel normal when I've taken this.  I've tried tylenol alone, but it didn't seem to work as well.  Is there anything others have found to work well for the discomfort?

I went into surgery with a positive attitude, but it sure is hard getting used to losing hearing on one side.  I love music and can't bring myself to listen to it, because it's not the same. 

Sleeping is also different.  It's hard to feel relaxed.  I also seem to have leg cramping and if I stretch or yawn too hard I can feel it on my surgery side.  Does anyone else have cramping or do I have other issues?  Plus, there's the headaches............

This forum is so supportive and helpful, thank you for welcoming me in.

[Shrnwldr]

Gratefully my headaches are almost nonexistent.  AT times I almost feel guilty with just laying around because I feel so good, but this last week taught about me overdoing myself.  Rest Rest Rest just like everyone said and don't overdo yourself.  You will be fine.

[kkweiher]

Has anyone experienced this..... when I am laying down and almost asleep I get jolted awake by what sounds like a bee or something flying  close to my ear..... I know its inside my head because I sleep with my deaf ear up.  Also, when I have the phone to my ear and am listening to the ring through my good ear its like the noice is bouncing off my bad side. It sounds so strange, especially since I'm hearing it inside my head, I would have to be because I have no hearing on the left side anymore.

[marg]

Hi Amel,
    I had some leg cramps too.... this will sound weird but I started eating a banana every day..... I was low in potasium ( banana's have lots of that).  I also tried walking around a bit every hour or so...that helped too. 
    I really understand about the music... I was a singer/voice teacher at one time and I grieved about the loss of full beautiful sound too. As a matter of fact I asked my husband to use ear phones to listen to music the first 2 weeks after surgery because I just couldn't take how  music sounded like a 'cheap radio' and I would cry.  I have adjusted a bit more and I am trying to be grateful that I can still hear music  with my other ear... and that is better than not at all  ( even if it isn't the same).
Margaret
( Today - I am just 3 weeks and 1 day after my own AN surgery)

[amel]

I did happen to eat a banana yesterday and felt better.  Got full bloodwork done today at the doctors, so we'll see. 

I have been listening to music again, and I've been enjoying it now.  It's not the same, but one good ear is something to be thankful for.  Good luck with your recovery, it can be frustrating - but things could always be worse......