ANA Discussion Forum
Post-Treatment => Post-Treatment => Topic started by: solecleansing on November 29, 2007, 05:43:15 am
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Today is 3 weeks since my retrosigmoid surgery. Surgery was performed by Dr. Cunningham and Dr. Fuchushima at Raleigh Duke Hospital. Recovery at the hospital was very tough for me, I think having fibromyalgia was a factor. My legs jumped all over the place for 3 days and I didn't even feel like dancing. ;D
I lost total hearing in my left ear which was a disapointment because we chose that type of surgery for a better chance of saving my hearing.
I have balance issues - get around the house okay but need assistance outside. My left eye is dry and I can't wink - left side of my lips/face is a little off - drinking liquids is interesting. dribble dribble :P
Pre surgery I had planned to go back to work in December. I don't see that happening because after about 15 minutes of paperwork I get overwhelmed.
Any words of wisdom from any of you that have had similar experiences would be appreciated.
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At 3 weeks, you're certainly entitled to whine! Actually, I think after having brain surgery, you're entitled to whine whenever you need to!
I had my surgery in February. I too, lost hearing in my right ear, dealt with the incredible pain and inconvenience of the dry eye, still can't wink and would probably benefit from a sippy cup. We all get impatient for things to return to semi-normal, but unfortunately, nerves work when they are good and ready and they don't seem to care about our time schedules! At 3 weeks, I still looked like a train wreck (and felt like one), but I've had surgery to fix the dry eye thing and can smile enough so that people know I'm smiling, so things do improve... slowly....
I still have to drink through a straw or I wind up wearing whatever was in the glass. Soup is not a pretty sight either - I don't think I would order it at a restaurant unless they provided a bib and a dropcloth. Of course, with my 2 little ones and my husband, we could probably use the dropcloth anyway.
My surgeon told me before my surgery not to plan to go back to work until at least 3 months post-op. I'm a stay at home Mom, so technically, I was back to work the day I came home from the hospital, but there's no way i could have handled a job outside the home. Hopefully, you are able to take the time off of work that you need so you can ease yourself back into it and give yourself time to heal.
Don't get discouraged. It's still early in your healing process. Slowly things will get better and you'll feel like yourself again. I know it took a while for me to feel like "me".
Take good care of yourself and don't push too hard!
Lori
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Sole Cleansing,
You probably do not want to hear this but I think what you are feeling is perfectly normal.
It does get better with time… and you need to take the time necessary to get better. If you can stay home longer on medical leave I suggest you go for it.
Reading your post here I am assuming you do not have facial palsy … this is good. A blessing to count …
Here is a good link I found on post-op hospital discharge expectations put out by the Acoustic Neuroma Association of Canada:
http://www.anac.ca/en/dischargeTreatment.shtml
Take extra good care of yourself and be extra diligent about getting care for your eye. Remember the “e� in ENt does not stand for eye – see an ophthalmologist if it is bothering you.
Here are some threads on eye care from the archives
http://anausa.org/forum/index.php?topic=5211.0
conjunctivitis issues
http://anausa.org/forum/index.php?topic=5307.0
Here is some more suggestions for eye care on this thread
http://anausa.org/forum/index.php?topic=5482.msg49698#msg49698
Hang in there and know that you’re an family on the forum here is there for you – and you have every right to whine. You just had major brain surgery… go easy on yourself.
Also know that everyone heals at different rates – and do not compare yourself to others. When you reach out and see that some are healing faster than you - you may get discouraged (try not to)… and then sometimes when you see how rough others have had it you stop and count your blessings.
It may be hard to understand this at week #3 but this AN journey will make you a stronger character for it …
Keep moving forward,
4
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Sole,
Have a bit o' this!
(http://i235.photobucket.com/albums/ee60/Captdeb_photos/lady_bug_costume_chocolate_lg_clr.gif)
and a lot of rest. also get out and try to walk a little if you can at lest once or twice a day for 15 to 20 minutes-it will help force your balance back. Also healthy eating is a must--fruit smoothies made with frozen berries, protein powder, soy milk and bananas are great and help keep the pipes moving, if ya know what I mean.
We all heal on different time schedules, I was raring to go in a few weeks, but then the headaches started. Hopefully you won't get those.
So go ahead a whine a little, that's what we're here for, we've all been there, and done our share, believe me!
Be well and sail on,
Capt Deb(http://i235.photobucket.com/albums/ee60/Captdeb_photos/emoticon___pirate_by_anya1916.gif)
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Solecleansing,
Life will be better at the two and three month check points. Your symptoms sound normal. Lots of rest and good eating will bring your healing progress in good time. Your body will respond and put you back to normal when it is ready. Three weeks is a good time to whine. We have each done that aplenty. You are grieving, too. It is hard to lose your hearing as a result of surgery that you hoped would preserve it. Take time to explain your grief to those closest to you. There are lots of supporters here to encourage you.
Try the Chocolate, what a treat!
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And if you cannot stand the taste of chocolate just yet this is not unusual. We were renting a little temporary apartment close to my surgeons’ hospital (I.e. I went out-of-state for surgery) and I was so cabin fevered at week 3. We went out-and-about and I bought a decadent dark chocolate .Haagen-dazs ice cream bar (My former favorite) and it tasted so disgusting to me being that the facial nerve thins messed with my taste (not uncommon)
I started being able to taste at chocolate 5 weeks … and then I was back at it (not necessarily a good thing) however I still cannot stand the taste of coffee (and I was so addicted to coffee pre surgery … I think my headache post op was more form caffeine withdrawal LOL :D)
So if your appetite is all off do not get too discouraged – it will come around… and after you polish off a huge bar of Hershey’s in one sitting … you will have wished it hadn’t . ;D LOL :D
Hershey’s hugs and kisses to you ;) … it will get better
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sole, I agree with the Hershey suggestion... and sending you huggles (I have FMS as well and hope your pain levels are tolerant during this time....) Hang in there! Wishing you wishes for continued wellness!
Phyl
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Whining is permitted and in fact encouraged. I'm nearly 8 months post suboccipital AN removal. I too chose this approach because the doctor thought this was the best chance of preserving my hearing in my right ear. Didn't work so I'm still adjusting to single side deafness. It is a challenge isn't it. I had similar facial issues which are resolving, but the process is very slow. Just this week the right side of my nose was twitching which I think is related to nerve recovery. My taste is still off, but not as bad as in the beginning and my balance is still improving. Walking in the dark is my biggest challenge with that.
Hang in there. Everyone on this board told me things were going to get better and by golly they are. Visit and whine with us any time.
Linda in WV
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Sole Cleansing -
Like everyone else said, give it time. I also had retrosigmoid and also hoped to keep what hearing I had left in my AN ear, but that just didn't happen. Docs do their best, but they can't guarantee anything - I think my neurotologist was more heartbroken than I was that he couldn't save my hearing.
Balance issues, dry eye, extreme fatigue are common problems, especially at this point in your recovery. Be good to yourself; you've been through a lot both mentally and physically. So rest, do your balance exercises, and things will eventually get better.
I'll be 6 months post op in a day or two and I've never felt better. If you didn't know I had AN surgery, you'd never suspect it.
Hang in there,
Jan
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Sole,
Good to hear from you. I've been wondering how you were doing. I had similar symptoms at three weeks out. Things will look much better at 6 weeks, hang in there. I agree with Deb's suggestion on walking every day, it really does help with vestibular retraining. If you haven't so far, consider asking for a referral to a Physical Therapist versed in Vestibular Retraining. They can help with balance issues with exercises that focus on retraining the brain so it gets used to one vestibular input.
Regards,
Rob
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Ditto on the
" suggestion on walking every day "
Good for circulation, balance therapy, cardiovasular ... and keeps those blocked up bowels (caused by all the meds they give is ::) )
SO important to walk after surgery
This little booklet I ordered after surgery was very helpful:
Improving Balance Following Treatment for Acoustic Neuroma (AN8)
Explains the causes of balance disturbance and offers exercises that patients can perform with the goal of improving balance function.
Price: $3.00
https://secure.baxinternet.com/~anausa/for_sale.html
Keep moving forward...
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at 3 weeks I was still on walker!! .. and today I'm out kayaking every chance I get .. so it does get better .. its just realllllll slow .. push yourself a little and get out and about walking as much as you can .. even if its just 1 trip around the house .. a few days later.. try 2 trips... and so on....
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Yup come to think of it at 3 weeks I still had the walker too… and stuck to smooth ground only.
3 months + 2 weeks (not that I am counting or anything ::) ) today I was hiking nicely in the woods and climbing over fallen trees, uphill, down hill and uneven ground.
Wow! Kayaking Huh? I always freaked out when I had to do the “Eskimo roll� (probably has a new more correct term now- I am dating myself here) … I would get stuck underwater and have the most troublesome time trying to get the kayak skirt off after not being able to roll back the kayak upright.
Pretty ambitious to be kayak fishing … something for my outdoorsy balancing act to work towards.
I love reading these “keep moving forward� stories.
Hang in there “solecleansing� – it does get better…
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Sole...I recommend seeing an eye doctor for the dry eye. I had plugs put in both my eyes for the dry eye (and still have them). They were/are a life saver.
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Thanks for all your posts. It means so much to have your support, comments and humor.
I had my 3 week check with Dr. Cunningham and he put me on another round of steroids. He feels that the face palsy is due to swelling because it is worse than it was after surgery. I may see a therapist for the balance issues if they aren't better in a couple of weeks.
Yesterday I had an emergency visit to the eye doctor. Evidently I had taken a chunk out of my cornea and have eye abrasions from when I was drying off with a towel after a shower. I didn't realize my left eye was open. He put on a bandage contact lens and put a plug in my tear duct. He prescribed antibiotics oral and eye, steriod drops, lubricating drops and suggested I use a eye patch and eye gel at night. I will see him again on Monday. ::)
Still waiting to hear about my L/T disability from my employer. I'm probably going to move in with a friend until I am able to go back to work.
Take care,
Judy
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Hi Sole: I echo what everyone is saying: 3 weeks isn't a long time at all - at 3 weeks I was waiting for a gold eye weight (put in at 4 weeks). I couldn't begin to think about going back to work - that didn't occur for 2 months post op & then it was part time for 2 weeks. Your body still needs lots of rest, time to heal from all the trauma, rewire the brain for balance.....
I'm so sorry you're having such a bad time with your eye - abrasions are very painful - I just went thru it 1 1/2 weeks ago - keep putting in the lubricant very often (I was putting in eye ointment every 3-4 hours when my eye didn't blink - I found Refresh PM worked the best for me, you'll find which brand works best for you).
If you don't get your 'blink' back soon & don't get an eye weight put in, there's a company called Medtronic who make a moisture bubble for use at night called The Dry Eye Comforter eye bandages. 14 nonsterile per box for $28.00 (incl. shipping). Their tel # is: 1-800-535-4646. They were very helpful. I used them for the 8 months my eye weight was removed & I was waiting for the platinum weight to be put in.
Always good thoughts, Nancy
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Hi Judy. I think the tear duct plug will help you a lot. I had done a lot of damage to my cornea too, right after the surgery, but after my eye surgery, I haven't had any problems since. I am always amazed that my eye hurt more than having my head cut open, but the eye doctor said there are a lot more nerve endings in your eye, that's why it hurts so much. Makes sense.
Did you ever get the e-mail I sent you? My computer was apparently on strike the other day and was not cooperating with anything I tried to do!
Take care!
Lori
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Hang in there.
I'm 9 week post-op. I did not see any significant improvement until the 8th week. At the 8th week, I took a trip to Asia for 2 weeks (the plane ride concerned me since it was a 16 hour trip with one stop and then another 2 hour trip, but no issue at all...). The vacation trip was a great help since when I was there, I did not remember my surgery and just enjoyed the sceneries and the vacation.
Now I'm back working and I do not pay attention too much to some of the minor issue (some slight balance issue...). I'm used to my one sided hearing now and it does not bother me much anymore.
I recommend that from now until you'll feel comfortable:
1. wear earplug everywhere you go if the noise bothers you.
2. Use eye drop every few hours.
3. Try to take a walk for about 30 minutes everyday.
Eventually everything will be ok soon.
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Things will definitely get bettter for you. I had my surgery in August 2007 and I still have some facial parlaysis on my left side (my mouth still droops & my left eye still can't blink). I am 100% deaf in the left ear and chances for recovery are slim. I will probably have a bone-anchored hearing aid installed after my consultation with my ENT surgeon this coming April. To regain your balance, you'd need to find a PT who specializes in vestibular problems. I gained my balance back after 3 months (20 sessions with the PT on land & in the pool, and inumerous times doing the exercises by myself at home. The hardest ones for me are doing the bunny hop and walking in a straight line with my eyes closed.
Hang in there since things will get better. By the way, if you have emotional problems (anger, depression, opinionated, etc) do not feel bad. A lot of us AN patients have had those issues, myself included. Just hang in there and talk to support groups either on-line or by attending meetings of a local AN Support Group.
Hip