ANA Discussion Forum
Treatment Options => Microsurgical Options => Topic started by: Glenda on November 27, 2012, 07:52:39 pm
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Well, after being in watch in wait since 2008 surgery is scheduled for tomorrow morning....Getting rid of this little alien....I'll be so glad to be back on here as a postie and I'm praying that everything goes well! I have the trusty Magic Scarf in my suitcase that is sure to bring lots of well wishes from past recipients.....Thank you all for the support you have given through the years! God bless you all!!
Glenda
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Good luck, Glenda.
I just got back from my visit to House and so far I am doing well.
You are in good hands and I will say a prayer for your speedy recovery.
Ken
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Glenda .....
Although you probably will not see this until you are a postie, my thoughts and prayers are with you today for a successful surgery and uneventful recovery.
Clarice
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Welcome to postie land Glenda.God Blees you. peace Dave
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Hurray! You are now a postie. How are you?
Karen
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Hi all!! I am a postie!! I'm having alot of dizziness and headaches at this time as I had good hearing before and now the nerve and hearing is gone. It feels like I have a blowing ball on the side of my head with all the pressure. The weather has been cold and dreary so have not got to get out as much as I would like. It is suppose to be better tomorrow so I hope I can get out and walk around more. Still using a walker or holding on tight to my husband. I surely do hope this goes away soon..... How are you other recent posties doing? I must admit it is worse than I expected but I guess I set my sights high. They tell me to take it slow. Would love to hear from the rest of you and hope you other recent posties are doing GREAT!!!
Thanks for the feedback!!!
Glenda
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Thanks for the update. Congratulations postie!! It sounds like you are progressing normally. I also held on tightly to my husband or son when I walked around in the beginning.
Karen
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Glenda ~
Although it may not seem like it, you're about where we all were at one week, post-op. I had a splendid recovery but didn't feel steady for at least two weeks, although by that time, I was driving again (with my surgeons permission of course). During recovery I 'pushed' myself a bit and was very motivated to get back to normal, understanding that I would have a few limitations. I do, but nothing that really affects my quality of life, excepting the SSD, which I've adjusted to and isn't a huge impediment. Trust me, you'll be O.K., in time. :)
Jim
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Thank you Jim! That makes me feel better! The first week was terrible but I can tell a difference in the headaches and feel like I will get better. The dizziness is still really bad but I will probably start some vistibular therapy next week so I am sure I will be on the way to being much better. I will be SOOOOO glad to wash my hair. I feel so greasy....Staples come out Monday and they said I can wash my hair after that. I know I will adjust to the SSD in time also. I am alive and Blessed!!
Thanks!
Glenda
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Glenda .....
So glad the surgery is behind you now. It seems like you are doing well, considering everything.
Ahhhhhhh, that first hair washing feels soooooooo good! That, alone, should make you feel better. And, the dizziness will get better. Try to walk, rest, rest, walk, rest, rest, walk, etc. several times a day and it will improve more quickly.
Continuing thoughts and prayers.
Clarice
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Glenda,
Congratulations for being on the other side of surgery!
I have been back home, Maryland, for 2 weeks and will be 4 weeks post surgery on Wednesday.
All I can say is that you will feel better everyday. Don't expect any sudden improvements as it has been a gradual process for me, but I do feel a little better everyday, and so will you. Especially once I finished up all of the steroids, I started to feel a little more clearness in my head.
I am up to 2 1/2 miles of walking and have driven some short distances while mainly avoiding the highway. I still have some pretty significant numbness on the right side of my face, still using drops in my eye, and of course working on getting back my full smile, but overall I am optimistic about how things are going.
I still am sensitive to crowds and loud situations and tire quickly - all of my Christmas shopping is being done online this year.
Just really take it easy and do your best to balance activity (walks, rehab exercises, etc.) with lots of rest. If I push things too much I end up with a pretty good headache.
Best wishes for an easy recovery.
Ken
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I'm back, I went to get the staples out and they put me back in the hospital for a cerebral fluid leak. It dripped a couple of times while in the Dr's office so to be on the safe side they admitted me. Good news is they monitored it and it ended up healing itself. Lots of prayer was going up by family and friends! They were going to do a lumbar drain but one of the interns misdiagnosed which saved me ;-) After the Dr got there and realized he had made an error the drip had almost stopped so they decided to monitor and after the Dr's conferred they decided to hold off on the drain. After 3 days I was sent home and told to come to the emergency room if it started again. Thank God it only dripped once when I got home and has been fine since. Scary but Thank God it healed. That set me back on getting home so I just got home this week. Walking better, slow but better. I have an appt. for vestibular therapy on Dec 31st. I am off the steroids. Headaches come and go, some days I don't have any and some days they last about all day. Hoping that in time they will go away completely. Not driving yet, still too dizzy but I know it will get better. I had done some shopping before surgery but like you Ken I have finished online. Ken, you said you are up to 2 1/2 miles walking, are you walking by yourself at this point? I would love to be walking that far but don't feel too steady by myself yet. Sorry I had not updated earlier but I was without a virus scan and just got it installed today.
I am so glad to have this over with!!
Merry Christmas to all!!!
Glenda
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Oh my, Glenda .....
You have had quite a time ..... sorry to hear that, but glad things seem to be back on track now. There seems to be no rhyme nor reason why these CSF leaks happen. Glad yours stopped without more aggressive action!
Rest and take it easy over the busy holiday season, walking when you can, but do not push to reach a specified distance at this point. The important thing is to listen to your body, not try to match what someone else was able to do. It takes a long time for the body and brain to heal from this particular surgery. As for the dizziness, the speed of recovery is directly related to how much your brain had compensated before surgery, as opposed to suddenly having to adjust post-op.
Many thoughts and prayers.
Clarice
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Thanks Clarice!
I am gradually getting better, headaches are almost gone, only occasionally now and not severe like they were. The dizziness is getting better but still pretty bad, I had pretty good hearing before surgery so it hit me really hard to lose everything with surgery. I start vestibular rehab on Monday so hoping that will help, and I still tire easily which I think is because of the dizziness. One thing that is really wierd and I don't think I have seen anyone post this but I have numbness in my bottom. I started not to post it, don't mean to sound ugly but it is starting to worry me a bit. They told me not to lay flat because of the cerebral leak so I have an adjustable bed and sit in a recliner when not up during the day so I thought maybe the numbness was coming from having to really sit all the time when not walking. It has been like this since surgery though. I mentioned it to an intern but she had no idea and said to mention it on my next visit if it didn't go away, it may be a little better.....have you ever heard of this before? Also there is still some swelling, fullness and roaring in that ear. Does this get any better? Thanks for the input!
Glenda
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Hi Glenda;
Re; "swelling, fullness and roaring in that ear", yes; It will get better. The roaring is likely due to the hearing loss but should diminish with the edema and aural fulness. It may not completely disappear for a time, however.
Re; Feeling numb on the bottom, I've never read of that occurring to anyone.
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Glenda-I still have a full headed feeling and I have numbness at incision site; my facial droop and smile are better. My eye requires drops and ointment at night. I am better than I was(I was very disheartened after surgery-it was harder than I expected upon wake-up)and have been told to give it time and patience, I am now SSD and am really missing my hearing; long conversations and lots of noise wear me out. But it does get better and I am hoping it will continue to get better.
If you are worried about the numbness call or e-mail your doctor. I recently had a strange minor changy thing happen with my left taste buds-but I see the doctor next week and am waiting.
Best wishes.
Mil
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Hi Mil,
Thanks for the reply, it sounds like you and I are about the same. I also didn't expect it to be as hard as it was on waking. Mine was one month yesterday and I know I have come a long way so I am trying to be very hopeful! My eye seems to be closing ok but is still dry and use some drops but it was that way before surgery too so I can deal with that. Right after surgery it was really bad and so swollen I couldn't open it so I see how far it has come. The SSD is hard, I too really miss my hearing and the roaring keeps me from hearing well out of my left ear, I really hope that gets better. I am in customer service and deal with listening to people every day at work and that part scares me about going back to work. Noise also wears me out and my office is noisy as we sell cable service and a tv is constantly going all day as well as people talking.
I did a look up about the numbness and it seems it is probably coming from my back. I had back surgery a few years ago and it does still bother me at times. I am thinking that being in surgery for 9 hours and the way I was positioned is probably what it is but I will bring it up at my next appointment and see what the Dr thinks.
Best wishes to you also!
Glenda
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I'm also in the same boat. I go back to work next week! Although I was already SSD and had bad ringing prior to surgery on Nov. 13, it's worse now. I am concerned that it will interfer with my job. Teaching requires hearing! My doctor requires a 6 month wait for BAHA and there's no guarantee it will work--schools are noisy places and I haven't heard of any device that is successful in noisy environments. I have a Transear that I need to get fine tuned and try it.When I go back, people are going to wonder why surgery didn't fix these things, so there will be a lot of explaining since they're used to surgery making people better. I know what you mean about how certain situations wear you out--it seems to take so much energy just to figure out what the person is saying when there's other noise around.
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Hi Chance1212,
It's really scary to think about going back to work in all the noise. Please let me know how it goes for you next week. I will pray that everything works out for you. I have spoken to a teacher here in town who is SSD with tinnitus since birth. She recently got a Soundbite and said she loved it and it helped her tremendously in the classroom. She is in a private school environment though and I think has a smaller classroom so not sure she has all the noise of a regular school. She also has not been through the trauma of surgery. In our case the surgery got rid of the potentially life threatening tumor but left us with some life altering changes. I know there are many others on here who have came through this and are doing great so I'm hoping and praying that next year we can look back on this and be glad it is in the past and that we will have adjusted. Take care and hoping next week goes well! Let me know!
Glenda
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Glenda and Chance-My thoughts and prayers are with you as you go back to work. I too worked as a teacher, and I appreciate the challenges you will face.
Glenda, thanks for reminding us that to prevent a possibly life threatening situation, we chose a life altering situation. It's something we had to act upon. When I get sad at the time recovery takes, my husband reminds me I am 100% better than I was 8 weeks ago and he says I must have been aware of surgical outcomes, but I don't think I was ready for what kind/ how long the side effects might be.
As for the hearing, I know there is hope when we are healed enough.
Are you folks driving or thinking of driving yet?
Carry on...Mil
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Hi Mil,
My husband also reminds me of the progress I have made. I am 4 1/2 weeks since surgery, I know I have come a long way and I am trying to be patient knowing it will get better. I am not driving yet or thinking about it yet as the dizziness is still too bad. I am ok if I sit or stand still but if I move so does the world ;-). I started therapy this week so hoping that within a couple of weeks I will be able to see a difference. I hate being dependent on others. I too thought I understood what it would be like but thinking you know and the reality of living it is harder but I know I am still healing so hoping it will get better. I know that I will not get back hearing but I knew that, my tumor was against my cochlea so it is gone and I REALLY miss it but I am alive and the AN is gone and I will be alright!! I thank God that it is not worse. My son also had an AN a year ago and just had a MRI which showed the AN was indeed gone but they found another tumor in the center of his brain and I am TOTALLY petrified for him. He goes back to the Dr in Feb and hopefully we will know more but dealing with that fear and trying to recover myself is awful. I keep praying that his will be gone when he goes back. This one is not an AN so not knowing is so scary....I can't seem to relax and rest like I should because I am constantly praying for him and that may be affecting my progress as well. I had not mentioned it on here before because I felt if I did not mention it maybe it would go away but if you read this I would appreciate any and all prayers for him! Sorry to get off subject, I just needed to let it out.
Thanks!
Glenda
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Glenda .....
So sorry you are still feeling so unsteady and so very sorry to read about your son. Reading your post about your son does give a clue as to why you may be slower in feeling better. Any stress (especially major stress like you have with your son's diagnosis) can affect how your brain operates.
One small thing about driving ..... I waited a long time after my first surgery to try driving because of the imbalance you describe. Finally my husband took me to a big empty parking lot and said "Here, try driving and see what happens." I was stunned to find that when I was not moving (as in walking), it was not nearly as disorienting and I did quite well. Still had to be very careful and use my mirrors and not move my head quickly. By all means, do not drive until you feel safe, however.
Many thoughts and prayers for both you and your son ..... especially praying that his new tumor will spontaneously go away!!
Clarice
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Glenda-I am adding your son to my prayers every day. We all have so much to handle. We pray for strength and hope and health.
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Thank you Mil!! That means so much!! Thank God for people here who understand. I pray for you and all my AN friends also. You are so right, so many have so much to handle.... Hugs to you dear ((()))
Glenda