ANA Discussion Forum
Post-Treatment => Post-Treatment => Topic started by: gb4821 on February 13, 2007, 03:02:34 pm
-
My Name is Greg and had my Sergury in Portland Oregon at OHSU 3 weeks ago.
I lost my hearing in my left ear completly but I don't have any Facial problems :)
I was wonder if any of you had any of these things happen to you, when they went away for you, and what help you over come it?
Metalic taste in your mouth that took the flavor of food away?
Tooth ache that started this last week?
The shakes from overload in a busy area and only having the one right ear now?
Multi tasking is still a problem. Seams that it is hard to do more then one thing in my brain at a time?
Thanks for your time and the postings I have already read and the ones that will be generated in the future.
-
Greg it's only been 3 weeks since your surgery. I've had all those symptoms and more. Give it time and it will slowly go away. If your not having facial and balance problems you are doing great. Hang in there, it gets better. Ellis
-
Greg, yes, most of the patients who have had surgery will wait a few months before life seems normal for food taste, multitasking, and facial pains. Keep working with your normal routines and get extra rest. It is estimated that the time for full recovery lasts about one month per hour of surgery. You are still dealing with the anesthetic effect on your body. The nerves that were traumatised are still healing too. Keep checking back with us and share your progress stories..
-
Hey Greg: I haven't had any taste issues as I had radiation (cyberknife)- I do know that the steroids post ck made me thirsty- especially if I had anything with caffiene in it. I'm assuming you are also on steroids and this combined with the anethesia would be doing a number on the taste buds. Oh and I have a throbbing along my jawline but post CK it is diminishing a lot- in fact only flared up once today and I just massaged it for a minute and it went away. I'm beginning to think it may have been triggered by the Cheetos I consumed! (High salt, high fat- my favorite food group).
Take care of yourself- good luck with recovery post surgery- Annie
-
I had all of those except the tooth ache. Overload in busy areas is still with me, 2 years post CK. Taste has gone back to normal. Multi-tasking si still a problem but I'm working on that!
Good luck with your recovery!
Ciao, Lorenzo
-
Hi Greg and welcome. What you are describing sounds pretty normal. It all takes time to heal....lots of time!
use a sensitive specific toothpaste like synsodyne which should help with the teeth issue. I put an ear plug in my good ear to buffer the twitching from over stimulation from the good ear. Or I'll send my mom who stuffed napkins in my ears in a casino to help you out if you wish ;D The multitasking gets better with time and practice. In the mean time keep post its around they are a lifesaver sometimes! I found in the beginning I needed to put things back in the same place and write things down to remember.
Hope things get better for you quickly! Keep us updated on how you are doing! Remeber to get plenty of rest when you need it!
-
Thanks for the many postings. It helps knowing that these symptoms will get better in the future and I will take your advise about getting more rest. I guess I was a little scared about these symptoms beacuse I didn't expect them.
Thanks again for the support and I will keep you posted.
Greg Brown form Oregon
-
Greg, I didn't expect any of the side effects I got and it was scary! But things do improve with time. You will find your "new" normal. I'm definitely not the same person I was before all of this!
Best of luck in your recovery and stay strong.
-
Thought I would give an Update today on how I am doing.
I have taken the advice and rested a lot more this last week. I t has helped a lot. My shakes are still thier but I was able to control them better when I was out at my sons Blue and Gold (Cub Scout) pack meeting last night. I now know what the Fishbowl head feels like but with time I hope it goes away or is more managable. I have an appointment with my Dentist and my eye doctor this next week to so if the teeth ache is caused by the surgery or just natural causes and the blurry vision is the same. I Live on a hill side so I took a walk down the hill to my mail box yesterday for the mind and body exercise. I really felt the Fishbowl feeling for the next 3 hours but I am told that this kind of exercise will help in the long run. Just don't over do it my Doctors said. I woke up to 5 inches of snow today so my outside walking might have to be but on the back burner. Some good news is that my son is enjoying sleding down our hill and making snowmen.
Hope all is well with you and thank you for taking the time in reading this thread it has help a lot,
Greg Brown
Klamath Falls Oregon
PS - thank you bettyprincess for e-mailing me and checking up on me.
-
Hi Greg,
Down in Klamath Falls, huh? I went to Roseburg HS and to Ashland for college. Now I'm in Vancouver, WA. I had Gamma Knife and my trigeminal nerve is draped over the AN so I have facial numbness and the inside of my mouth (on the AN side) is affected also. Some days I can taste metallic or salty stronger than other days. I hope that your symptoms subside and that you will be feeling much better - which you will but it does take time.
Good luck to you,
Sue in Vancouver USA
-
Greg, It is good to hear sounds of progress for you. I fretted and waited for changes and kept on trying to get to normal. At one year I'd reached what I thought was 99% and now three months later I am even better than that. I have as much energy as I had pre op and before I received the surprise diagnosis. It takes positive thinking and time. I've heard that 2 years is even better!
-
Hi Greg:
Other than the tooth ache, all of the things going on with you are exactly the way I felt. I am comming on 3 years since surgery and I can't complain about a thing except the multi tasking. I just plain don't like to have to do it. I used to thrive on pressure and doing a million things at once. Now, doing a few things at once is my limit and I'll take it. The first year post op, I couldn't even do that without getting so overwhelmed I wanted to scream.
I take it back, there is the overload thing in a loud room.......I doubt that will ever change. It makes me nuts. I am hoping that getting a hearing device in the near future will help with that.
It does sound like you are right on track Greg. Hang in there. Kathy
-
Hey Greg,
I am right behind you surgically by 10 days and so far I am with you on the taste thing all water tastes stale/stagnant but if yu add ice it goes away for me. My surgery relieved my facial numbness and twitching and the searing pain of the tumor pressing on my Brain Stem. Right now the hearing and dealing with limitations are the toughest part. I am dying to pick up my 1 year old daughter, Julia but she weighs more than 5 lbs (thankkfully.....). From so much that I have read from others, I feel so blessed to be only deaf in my left ear. Looking forward to checking out the transear posts here.
Cheers to you and continued good recovery!
Steve
-
Hey Greg,
I am right behind you surgically by 10 days and so far I am with you on the taste thing all water tastes stale/stagnant but if yu add ice it goes away for me. My surgery relieved my facial numbness and twitching and the searing pain of the tumor pressing on my Brain Stem. Right now the hearing and dealing with limitations are the toughest part. I am dying to pick up my 1 year old daughter, Julia but she weighs more than 5 lbs (thankkfully.....). From so much that I have read from others, I feel so blessed to be only deaf in my left ear. Looking forward to checking out the transear posts here.
Cheers to you and continued good recovery!
Steve
Hi Steve,
Thanks for the posting and hope your taste buds come back too. Mine are tring to trick me and some times they act like they are working ok and other days they go back to the untasting side (if that is a word). I think the best advice the forum gave me was to rest and sleep a lot on week three. It seamed to help me so far. This week I have tried to stay up a little more and some days it work but orther days I have paid for it. I also feel lucky to not have facial problems as well. Let me know what you think of the Tranear aids if you can? I have an appointment with my doctor March 6th to discuss my options for the hearing and do a little post - op inspection. This is week 4 and I am feeling a little more normal but still can't do the normal things yet. I still get uneasy on unlevel ground and level for that matter and walking gives me the fishbowl head they talk about. and of course the headches but med's keep those down to a doable state.
Hope you recovery goes well and fast, :)
Greg Brown
Klamath Falls, OR
1.5cm tumor
surgery at OHSU
Jan.22, 2007
Lost hearing in left side and balance problems but no facial problems.
-
Greg,
Thanks for the tips, I hit a wall today energywise for the first time and just laid down n the couch and slipped int a gd nap (My O key is sticking). It only affects my taste of water. I called transear today to get some info and they will send a fitting kit to my ent to look into this option, I hear (read) good things about it as my SSD also on left like yours is tough to get used to and in my businesss I don't know how I can do without the hearing though I have been functinally deaf fr mnths. Met a guy in my neurosurgeons ffice and saw that he had an MRI that said Gadlinium contrast on the side of the folder and he had a scared look on his face, I went over to him and just said t him that the doctors here were tp notch and he said he had a 3 cm acoustic neuroma and I told him turning my head t show my scar that I had a half cm smaller one three weeks ago. I talked t him for about 10 minutes and then gave him my business card and told him to call me, I think that he was relieved to see a living breathing survivor. I know that when ANA gave me a list I called smeone on it and felt much better so I just wanted to keep up the goodwill, plus I was him such a short time ago, physically and emotionally.
Cheers and thanks ofr the post,
Srry abut the o's
STeve
-
Thought I wuld give an update ont he thread.
Went to the ENT Doctor yesterday and my scare is looking good. He also recieved the information about the Transear aids and told me that the Audioigist had herad about this and said that it is cutting edge. She sounds excited about it too!!!! I will let you know about that when I get my appointment with her. As far as me I am still off from work for at least 2 more weeks to get my balance back to a more normel state but the doctor did set me up with rebah for it as well. I still get the headaches but they are controled with medicine. My tongue is still numb on the surgery side but the rest is working alright. As far as the toothache I go in next week for maybe a root canal. Not sure why these things happen in 3's but I also when to me eye doctor and my eyes are worse then they were a year ago. I think that has contributed to my burriness but I did notice my eyes focusing better a couple of days before my eye appointment. I feel stronger each day and try to walk more to help my head and body to talk better together.
Overall it is going good and hope to be doing more within this next week.
Thanks for your help and support,
Greg Brown
-
Greg,
My eyes were funky after surgery. It took a good 6 mos before they seemed normal. I just had them checked 18 mos out and need new glasses. I seriously doubt it's from surgery..more like old age LOL (they say after you hit 40 you need bifocals LOL) My teeth bother me with sharp pains on my an side. Is that what's bothering you? I'd put off a root canal as long as possible! Especially if it's on the an side with numbness it could be your nerves zapping.
-
Greg,
My eyes were funky after surgery. It took a good 6 mos before they seemed normal. I just had them checked 18 mos out and need new glasses. I seriously doubt it's from surgery..more like old age LOL (they say after you hit 40 you need bifocals LOL) My teeth bother me with sharp pains on my an side. Is that what's bothering you? I'd put off a root canal as long as possible! Especially if it's on the an side with numbness it could be your nerves zapping.
Hello Michelle,
I think my age is getting to me as well because I am getting new glasses too. As far the root canal I have pain with heat and cool items around the tooth. I don't have sharp pain but the hot and cool foods and drinks cause a lot of pain. Hope this helps and thanks for the posting.
Greg Brown
-
Dear Greg Brown--
I had hot-and-cold problems with my teeth a few years ago, and my dentist told me to start using Sensodyne. It worked. Next time I saw him, he said "I could have gotten you for a root canal." You might want to try it. This was all way before I had radiosurgery for an AN six weeks ago. The only side effect, strangely enough, is that my teeth on the opposite side feel a little funny--it's like they're always just coming out of novocain.
Mac
-
Oh GB I am sorry about the root canal- and yes I am a big believer in the axiom that things happen in threes. For example when I was 29, my boyfriend broke up with me, I lost my job and I found out I had to have a root canal - all in the same week! Hope your root canal goes well- heck you already are in recovery, might as well get er' done! Take care, Annie
-
Greg,
JUst checking back in with you nad happy to say that my teeth are ok. I did get oral thrush (yeast infection on my tongue and gums Ouch) and the meds gave me gastro problems don't ask. I am walking 2.5 - 3 miles at a time to get in shape to go back to work soon, Also, my an side of my head feels a numbing throb some of the time now that I am without pain meds and and I get to start driving Thursday! Keep Up the good Recovery! Do you have any days when you just hit a wall physically. I hate the fatigue sometimes.
Cheers,
Steve
-
Greg,
I am happy to hear you are doing well only three+ weeks out of surgery. I am almost two years post surgery and I still have trouble multi tasking, but it is getting better. Remember, this is a slow recovery process, push yourself when you can but remember to treat yourself well and get some rest too.
-
thought I would give an update on how things are going now. Thanks again for all the postings and the thoughts you gave given me. I am so lucky to have found this site and you for help with questions and suport. I hope that my posting will help others through their recovery process as well.
Stevey as far as hitting a brick wall I still find myself sometimes over doing what I should and I still pay for it but they are getting less and less. My blood pressure has come down to a normel number most of the time and I am working on lowering my headache med's but I am still working that out. I to am walking about 2 miles a day to get my stamima and weight under control. I will see the audioalogist this Friday to discuess hearing options and she has heard about the tranear option and said it is cutting edge in technolagy so that make me happy that she has heard of it. I Also hope to start DRIVING next Wednesday after my ENT appointment but I will have to get the dizzyness under control a little more to let that happen. My shakes and dizzyness are getting better but still have dizzy spells when I walk and ride in the car. It feels like I am half drunk compared to just a week ago where I felt completly drunk when I walked and when I was in the car riding. I also still shake but I can control it most of the time until I get tired or if it is a room with loud noise or a group talking in it. I see continued progress each week and look forward to the weeks coming in the future.
Thanks again for all the help and support.
Greg Brown
-
I forgot to ask this question and thought I would put it out for you as well.
I am looking to travel on a Plane in the near future and was wondering if any of you had any advice about flying and if their is any problems with flying and AN's recovery or post-op?
Thanks,
Greg Brown
-
Greg,
Alot of the patients that have been treated at west coast clinics like House have traveled right after surgery without much problem But talk t your doc for sure. I don't have the dizziness or the shakes since first night in ICU, that and duble visin went away, but I tried to escape ICU because they wouldn't give me enough ice chips after 11 hours of surgery. They kept putting on the tv and what ever I saw was burned into the back of my eyelids so I had really weird visions, maybe from hydrocephalus or the cerebellum injury from resection. They gave me atavan and I felt great after that. I only feel dizzy in the dark, watch out in the bathroom, trust me almost fell. I hpe your residual symptoms cntinue t get better, I am seeing my ent tomorrow and he is going t talk to me about trans ear too. I hate crowded places now and more than one talker, fuhgeddaboutit.
Take care buddy,
Steve
-
Boy, do I HATE a crowd, a grocery store, department store or any place with too mcuh stimulation. My brain hates it and so so I. I too could not tolerate a car but after awhile I could tolerate an suv. the higher up the better. As a matter of fact I had jsut gotten a brand new audi 4 months before my diagnosis and after that it sat in the driveway because I hated riding in it. My husband too has one but I won't ride in it, too low, too much stimulation. We sold my audi(with <2500 miles) 1 1/2 years post op and bought 2 suvs. I still hardly ever drive, it exhausts me. I still use a cane for balance when I'm out and about, but it doesn't bother me, whatever I have to do to feel real in this world I will do. I do tend to avoid things which I know will be difficult for me like the movies or big parties. I am about to start fundraising for Obama soon and will have to put on some major parties so we shall see how I hold up. My last political event was a party I had for Elizabeth Edwards 10/04. That day I had an ocular migraine which sent me to the ER and I got diagnosed with the acoustic within two weeks. If you will recall, Mrs. Edwards got diagnosed within that same time period with breast cancer, how ironic. I still tire easily, still get shakes, but my life gets better now every day but it has taken more than two years to get here. don't despair, I wish I had known about this site way back when. These people have a wealth of information to share with all.
-
Hi, Everyone- Another Newbie here. My surgery was 2/21. Few facial issues (burnt tongue and ear on surgery side) but balance issues are really rocking my world- more so than going into surgery with intact hearing and coming out with none on the right side.
I so much appreciate reading that so many other people have experienced all of what I am experiencing. Learning limits is the hardest for me because I'm so used to just doing what I want when I want. The feeling of "fishbowl head" is really throwing me! It's not too bad at home or in a small crowd but really frightening when sensory overload hit (Yesterday's lesson was that going to Super Wal Mart is not a good idea-even on a day where I'm feeling pretty functional!). Hardest of all is realizing that my body is calling the shots and probably will be for quite a while! Those bursts of energey are followed up by a nap at least and a full day of feeling wiped out at worst.
I know that I'll never go back to the "normal" I was before surgery but can anyone(s) give me a guesstimate of when they started to feel a new sense of normal for at least to regain enough energy to get back to real life? Thanks again to everyone---your support makes a strange situation much easier to deal with! ;D
-
Hi lxg57:
Welcome!!
I felt good at 2 months post op. I felt real good at 3 and somewhere between 6 and 12 months, I was the same as before surgery. It took time, but all is very well now at almost 3 years.
Good luck to you. Patience pays off, Kathy
-
Hi, Everyone- Another Newbie here. My surgery was 2/21. Few facial issues (burnt tongue and ear on surgery side) but balance issues are really rocking my world- more so than going into surgery with intact hearing and coming out with none on the right side.
I so much appreciate reading that so many other people have experienced all of what I am experiencing. Learning limits is the hardest for me because I'm so used to just doing what I want when I want. The feeling of "fishbowl head" is really throwing me! It's not too bad at home or in a small crowd but really frightening when sensory overload hit (Yesterday's lesson was that going to Super Wal Mart is not a good idea-even on a day where I'm feeling pretty functional!). Hardest of all is realizing that my body is calling the shots and probably will be for quite a while! Those bursts of energey are followed up by a nap at least and a full day of feeling wiped out at worst.
I noticed a major changes about the 6th week with having more stanima and some of the syomptoms getting better. I think that I feel these better changes each day and can concentrate on the larger ones like my hearing, tiriedness, dizzyness and larger crowds now. I hope and work at adding to these changes each day. The thing to remember is to listen to your body to let you know when to rest. It really does helps. I will try to remember this when I go back to work as well but thank god I have a loving wife that will not hesitate to tell me to take it easy.
Thanks for the posts and talk to you soon, I will post again after I talk to the audioalogist on Friday about what may work for my hearing...
Greg Brown
I know that I'll never go back to the "normal" I was before surgery but can anyone(s) give me a guesstimate of when they started to feel a new sense of normal for at least to regain enough energy to get back to real life? Thanks again to everyone---your support makes a strange situation much easier to deal with! ;D
-
lxg57,
I've experienced everything you are experienceing. In due time it all resolves. This article helps explain.
http://www2.kumc.edu/otolaryngology/otology/VRforMDs.htm
For just 5 or 10 minutes each day for a few weeks you can sit yourself in a chair facing a clock then slowly move your head side to side while focusing your eyes only on the clock. Do this from time to time. This helped most. Three years later I run, skate and play sports in the street with my son and all his friends. Your other side will compensate soon. Some people have no vesibular in either ear and function relatively well relying on other balancing mechanisms such as vision and muscle reflexes.
-
lxg57,
Oh, to answer your question as to how long will the balance will be challenging? I took numerous daily small walks following surgery. I went back to work 6 weeks following surgery but could have a little sooner. I was not gonna rush my recovery. I guess six weeks things were coming around but if you have the time to relax and do things at your pace I would suggest just that. It's good you went to Wal-Mart & this will help. I'm not so bad in crowded spaces anymore except when I am coaching and there are a lot of kids around. I can handle being around my team but when the other teams arrive Not Good!
-
Greg,
Hope driving is going well for you, I have not hit anything significant (a sleet drift) but did not dent my wife's lexus. I went to vestibular rehab to see the Therapist who helped me in-patient at Penn and FlyersFan has it down pat the excercises help so much, I actually gt on my bicycle briefly and felt ok (read: I didn't fall). I am walking everywhere and getting ready to go back to run my business part time and maybe do some other freelance work as the energy allows. I was able to whistle today to call my dogs and was surprised because my lip parsing was affected both before surgery and after but they told me is would improve. Hang in there and I think over time your body will surprise you. The tinnitus and SSD (single sided deafness) is driving me nuts and my ent has no experience and little faith in transear, he wants me to consider cros or BAHA, I am a little disappointed because transear never sent him the info they said they would send and I will have to pay out of pocket and transear seems the best deal. Has anyone found a good way to deal with tinnitus, post surgical?
Cheers,
Steve
-
I started work today and It was great to get a little bit of normal life back again. I was cleared to start driving a little last week and don't have to much trouble with it just feel better with roads I know because my reaction time feels a little slow and bumps in the road get my eyes going for a couple of seconds. I think this will go away with time and me driving more. I continue to need my rest but will work at doing more work and more dutes as I continue to feel better. But for now it feels good to get to this next step in my recovery. I also meet again with the Audiologist on April 6th to see what is available for my SSD and my not so good right ear ( Low pitches are gone ). Will post again later this week as I go through work and the challanges of that.
I continue to do rehab to help with balance and headache issues. I hope this will help with both areas. I would like to get off the med's for the headaches :-\
Thanks again for all the support and posting.
Hope all is well and thought I would give an update on things.
Greg Brown ;D
-
Greg,
Great to hear that you are doing so well, I am working now too and get pooped quicker than I'd like but am able t break through, I usually eat an apple or orange and it jump starts me. I am really just dealing with the tinnitus and SSD, it can be tough at times for sure.
Steve
-
Steve, a hearing aid will not change tinnitus. As far as I know there is no way to "cure" it. We just learn to ignore it. I have found my hearing aid (TransEar) gets my hearing nerve busy enough to allow me to just the tinnitus. At least I can't remember complaining that the tinnitus was bac while wearing my aid.
-
lxg57, At 5 to 6 months you will think you are in a new normal. By 12 months, you will begin to experience so much recovered energy that you'll look forward to getting the 99%. I am at 15½ months out and can work all day and stay up late like I used to do. Once in a while I sleep late but no more naps.