ANA Discussion Forum
General Category => Inquiries => Topic started by: crv1200 on March 05, 2012, 05:51:39 pm
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I am quite nervous to be going for an MRI tomorrow 3/6/2012. I've been seeing the ENT DR and we tried everything to treat the hearing loss and other symptoms and nothing has worked. In face it is worse. I have all the symptoms of an AN and he does not want to do anything else until we make sure I don't have an AN. I have researched on this website and others and my DR did not want me to do that before he thought it was scare and some of it has but I still wanted to be informed.
My hearing loss is at 30% now and my symptoms are getting worse and now I am having headaches and pain when I chew. I am a singer so you can imagine how this has hit me hard. I do not want to list all my symptoms but it's scary and I know it's kind of rare that I would have this tumor BUT I've had 11 major surgeries in 12 yrs for other things and could give a long list of things that are RARE that have happened to me so LOL you can imagine. I would like to hear from someone that has been through this and what symptoms did you have prior to diagnosis? Please.
Ray
P.S I am a 52 yr old male and the hearing loss in my left ear started in Nov,2011
My history with both ears prior has been a ringing for as long as I can remember and
the right ear I had other allergy related issues and have been in Singulair for that for 4 yrs. But that was not nerve damage nor a hearing loss so completely different.
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Hi Ray and welcome.
Keeping fingers crossed that the MRI does not reveal an AN. There are SOOOO many different reasons for sudden hearing loss (there is even a syndrome called Sudden Hearing Loss) and here's sending you wishes that the MRI is clean and that your doc can provide you answers.
Please hang in there... .and yes, stop reading too much right now until you get the MRI results. Please keep us posted on the MRI outcome.
Good luck with the test!
Phy
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Here's hoping that it is not an AN Ray!! Mine was diagnosed in Oct. Symptoms for me was fullness in my ear, incessant ringing for the last 5+ years. (thought that was just a product of getting older..of which I self diagnosed thanks to the wonderful www!) and I began to think that I might have some hearing loss so I went to an ENT. 80% loss in high range, 30% in the middle and 10% in the low. He recommended an MRI and mentioned a rare benign tumor that he wanted to rule out. So, the rest is history...... On Dec. 1st I had Gamma Knife. Now we wait for a six month check.
Good luck and keep us updated.
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Keep us posted on what you find out!
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Hi, Ray.
Just wanted to say that I hope your MRI goes well and also that you have to take what you read on the Forum with a grain of salt.
Yes, there are scary stories here, but everyone's AN Journey is different. Someone else's experience may or may not be like yours.
You also have to remember that lots of times those who don't encounter issues post treatment don't hang around the Forum for an extended time to post about it. There are exceptions - like me ;D - but the majority come here to discuss their treatment options, symptoms, side-effects, etc.
Remember there is life after an AN - and the majority of the time it's fantastic!
Best,
Jan
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I went to have the MRI and even with the open MRI I had a panic attack., in fact I never made it past the helmet, when I laid down and put my head in the bottom part of the helmet with the earplugs, she put the headphones on, I could not breathe! I felt I couldn't breathe which I have anxiety but never this bad, I freaked out so they could not proceed. I am waiting for the ENT Dr's office to set up another where I would be under general anesthesia. He thought I would have problems and I did too but I wanted to at least try. I felt like a loser with a big L on my forehead but the tech's were very kind and said it's so so common. Oh well. Thanks for the encouraging words everyone.
I will post again when I have a new appt.
Ray
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Hi Ray,
I'm so sorry to hear about the difficulty with the MRI, as if you don't have enough to worry about! Don't feel like a loser, MRIs of the brain are very claustrophobia-inducing.
I'll be thinking about you and hoping the MRI is the worst of it!
Liz
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Hi Ray, sorry you experienced that but I don't think it's that uncommon. I know, I have to have Valium before I can even go sign in for my MRI. The first one I had in 2008 at a hospital was a horrible experience much like yours however they wouldn't let me out until they finished but the one I had in 2011 was OK. Now I'm just waiting for my next one in May wondering how I'll get along with it since the new doctor is making me go to a different facility.
Good luck with the next one. It's good to know that they can /will work with patients.
Don't feel bad or beat yourself up. ;)
Karen
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Thanks again everyone. They know they will have to give me general anesthesia. I've had 11 major surgeries in 12 yrs so they have to bring out the big guns to even knock me out, valium and such are like taking an aspirin for me. I took 2 xanax before and it did not help because I take 1 to 2 a day .5 dosage for anxiety when needed so my body is used to it. I figured I would need to be knocked out. I had a regular MRI for abdomen and pelvic in 2008 and they had time with me, I freaked so bad but we finally got it done. So general we think is the only way for me with the head MRI. and Yes let's hope that's the least of my worries!
Ray
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I woke up in the middle of the night with my ear. The loud roar is twice as loud now and I have even less hearing in my ear. I won't be able to stand much of this and I will be crazy. I am still waiting for them to reschedule my MRI so I will be under general anesthesia. Please pray everyone this scares me.
Ray
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So sorry to hear about your situation, Ray. I'm fairly new to all of this too and I hope that it turns out that it's not an AN. You've definitely found a great support group here!
However, I just read your last post and, not to scare you or anything, but that roaring is exactly what I experienced when I lost my hearing back in 2007. It started when I went to bed on a Thursday night and by the following Monday I had completely lost my hearing in my right ear. I know you've been experiencing hearing loss for some time but when mine finally escalated to total hearing loss that's what happened. Again, I certainly don't want to alarm you and I'll be praying for you, but my advice is don't wait if at all possible. I know there's probably not too much you can do but I would hate for you to completely lose your hearing if it can at all be prevented while you still have at least some.
Best of luck!
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Ray, I'm sorry your woke up to a fearful change in your hearing. I have experienced a sudden change in hearing and various "noises" in my ear before, and it can be frightening. For me, both symptoms would stabilize after a period of time. I find mine is typically worse when the weather is bad, I haven't had enough rest, or when I've experienced more stress at work or other situations.
You may want to call your ENT in the morning to report the difference in your symptoms since your last MRI experience. You asked for prayers and be assured they are coming your way to bring peace to your mind and that the fears vanish. Emma
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Thanks Emma and Manders! Manders you did not scare but you told me what I already was thinking. NO one wants to come out and tell me what this sounds like because everyone wants to keep me positive and I am praying so hard and believing with all my being it is not AN but honestly I am scared. I know the symptoms and I have them all and this change over night is what happens when it is growing so that scares me. I know whatever the cause is I will survive.. Oh did I mention I am a very well known Gospel Singer? I had to cancel a concert this weekend due to being sick and I lost my voice for a few days on top of the ear issue, but it is very hard to sing right now with my ear the way it is, I do not want to retire from my music because it is what keeps me going. I write all my on material. I guess maybe it might be time to write about the hearing issue itself? LOL Anyway., thanks everyone and PLEASE always be honest with me. I came to this site because I wanted to know more as I face the MRI whenever it is and compare my ear issues with others so I wouldn't feel so crazy for thinking what I do.
Ray
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Rest assured that whatever happens with your hearing you'll certainly be able to continue on with your music. Actually, the day that my hearing completely vanished I had a choir concert that night and in spite of my insecurity about singing, my choir director assured me I could do it. And he was right. It was certainly a new experience and I could tell that my mind was processing sounds differently but I could still hear more than well enough to hear myself and stay on my part and in tune. Music is a really important part of my life too and I think that was one of my biggest fears when I lost my hearing, that I wouldn't be able to hear well enough to sing or play. But you'd be surprised at how well the human body is at adapting and over time you'll certainly find ways to compensate for whatever hearing you may lose. But let's hope for the best and that you can hang on to as much of it as you can! And, also, the rushing noise didn't last that long for me. Maybe around a day or so and then it quieted down. I have had tinnitus for the past five years but it's usually fairly unnoticeable.
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So Manders are you scheduled for surgery?
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Yes, I'm having translab performed on May 11 at Cleveland Clinic by Dr. Woodson & Dr. Gonzalez-Martinez.
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I spoke with the scheduler today and hopefully tomorrow I will have a date for the MRI under general anesthesia. I also left a voicemail for the Dr's Nurse about the change with my ear. The DR is in surgery all day today.
Ray
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Manders I wish you all the best for your surgery and I will be praying for you. I read your blog and you are quite honest in it and that is very refreshing.
Ray
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Thank you, Ray! And I'm glad you liked the blog. I do try to be as honest as I can. I don't see a point in fabricating things or acting like I'm super woman because that's no help to anyone.
Keeping you in my prayers too!
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So the earliest they can get me in for the MRI under General Anesthesia is April 25th at 10am. That is over a month a way! I am like good thing I am not dying or so no one thinks. I have to see the ENT before than too so that on March 27th. I am like this is way to long for me to wait with my nerves already a mess and my ear is worse. Please. Dang it.
Ray
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I know exactly how you feel! Once I found out that I had an AN and had decided on surgery to remove it I wanted to get it taken care of ASAP. I met with my doctor and made that decision on February 15th and my surgery is scheduled for May 11th! I think the waiting is the worst. Once you know something's wrong you don't want to have to sit around and wait, you want action.
Guess we both just need a huge dose of peace and patience! :)
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Manders you are so right. I have little patience anyway.. LOL But hopefully I will be fine. If this roar in my ear gets so I can't take it I will just go to the Emergency room.
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Well I never thought that my upper lip going numb for many years now could ever been related to my ear issue so I've not mentioned it to the ENT but I will. The newest thing happening to me is my tongue is feeling numb and food does not taste right at times. Has anyone ever heard of such in relation to an AN? I see I am going to have a hard time waiting till April 25th for the MRI., but some things I never associated with my ear and thought I was crazy, also my left side of my face tingles and feel numb but not all the time.
Ray
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Hi, Ray ~
To answer your question from post#22; A few months prior to my AN diagnosis I developed a small 'numb spot' on the side of my tongue and my sense of taste disappeared to the point that I practically stopped eating and lost 30+ (unneeded) pounds. This finally motivated me to make an appointment with my PCP. He ordered an MRI and, as they say, 'the rest is history'. Although there can be other reasons for your symptoms, the MRI scan results should tell you (and your doctor) whether or not they are being caused by an acoustic neuroma.
Jim
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Thanks Jim for the information. My ear continues to get worse. I had to make a trip to Raleigh,NC from my home here in SC and it was total of 9 hrs driving in 2 days and the roar is my ear is so loud now that it's almost unbearable and I am wondering will need to go to the ER. My ENT appt is not until next Tuesday on the 27th. I am having too many changes in the last 2 weeks and more and more symptoms which is really scaring me.
Ray
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Hello Ray
I had similar symptoms as you with the noise in my ear as well as tingling lip and tongue which went numb.
But please try to stay calm about your outlook. It may be something to do with your hearing and not an AN (live in hope I always say :))
If it ends up being an AN then you have all of us here for support, answers, and hugs along the way. You are not alone and we'll tag along beside you every step of the way.
If you feel the need to go to emergency then please do it without delay. It may get you that MRI sooner if you have to see someone in the ER.
Good luck mate. Big hug from across the big pond in Australia.
Suu xxoo
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If it's any encouragement, I asked my ENT last week about my upper lip tingling off & on; area between lip and nose. He said it wasn't related to my AN that the feeling was caused by the "sensation" nerve as in not the facial nerve. Just thought I'd throw that out for what it is worth.
Good luck.
Karen
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Ray, I live in Fayetteville and my Doctor in in Raleigh. I had great results, AN on the right side, facial numbness, tongue numbness, balance issues and diminished hearing. My AN was removed 7 months ago and I am still plugging along. PM me if you want doc info.
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If it's any encouragement, I asked my ENT last week about my upper lip tingling off & on; area between lip and nose. He said it wasn't related to my AN that the feeling was caused by the "sensation" nerve as in not the facial nerve. Just thought I'd throw that out for what it is worth.
The "sensation" nerve is the trigeminal nerve (cranial nerve V), which is different from the facial nerve (cranial nerve VII). Depending on their size/location acoustic neuromas may affect the trigeminal nerve, thus causing numbness, tickling or burning sensations, or in the worse case scenario trigeminal neuralgia. It is not very common, but it may happen.
Marianna
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Thanks everyone for the replies it does help so much to talk here even though I do not know if I have an AN it is nice to have people who understand the symptoms since some of my family and friends think I am over reacting. But until you start losing your hearing and all these other things happen you can not understand. I currently live in the Greenville,SC area in a town called Greer. Greenville Memorial Hospital is supposed to have some great neurosurgeons but I don't know myself. I used to live in Raleigh for 15 yrs until I lost my job and moved to SC where I've not been able to find a job. I would love to go back to Raleigh but that does not seem to be in the cards. Right now it's confusing. I have no insurance and the Greenville Hospital system has given my sponsorship so they would pay all the bill and will be on the MRI so for now I guess this is the place. LOL I am going to try and tough it out till Tuesday. Can anyone tell me if weather like cold and dampness ever effected you?
Thanks everyone for making me feel welcome even though I do not know if I have an AN.
Blessings
Ray
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G'day again Ray
Cold or hot weather has no bearing on how I feel except that I seem to sweat (more ladylike term is perspire :)) more while doing things so sometimes need a fan on me. Unsure if it's related to post-op or if it's just me getting older.
Suu
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Well I have hot flashes but that is another subject LOL
Ray
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Hi, Ray...my mom lives in Easley and I'm just down the road a bit, north of Atl. Perhaps we can meet up sometime. I will send you a PM (private message) to give you my contact info and/or, my info is on the Willing to Talk list.
Know it's hard having to wait so long for the MRI and wondering if every new tingle is related to a possbile AN...I will continue to hope that it is not...
Best to you,
Cindy
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Thanks Cindy I got your info. Right now I am having a hard time dealing with the roar in my ear. It is worse today than it was yesterday, sounds like it did after driving so much. It's bothering more and more at night also. I am trying so hard to hold on until the DR. appt on Tuesday. My family and friends keep telling me I shouldn't wait but go to the ER and right now I have bills always I can't pay and have no insurance. I am not sure what to do. The Hospital is paying for my MRI not sure what else though.
Ray
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I just woke up from a nap and the noise in my ear has increased once again,, 3rd time in 2 weeks,
this time though the roar/hum is much louder but there is a high pitched sound on top of that and then of course I have the ringing which has been there so long I can't remember life without it.
this is OH MY GOD!!!!!!!!!!!!!!!!! I now can't hear much out of this ear because of the noise in it which I know by the ENT that it's the other way around, hearing loss is causing the noise in my ear. I don't think I will be able to sleep tonight. My appt with the ENT is tomorrow 3/27 at 1:15 pm and I am going to beg him to try and find a way of getting the MRI before April 25th. Pray people if you pray
Ray
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I wanted to let everyone know how the Dr's visit went today The hearing test today confirmed that my hearing loss is much worse in the last month. I am at 50% loss in my left ear now. The Dr said that goes right along with all the things I was telling him. He said that was a BIG red flag. He is more concerned now DUH!!!!!!!!!!! They are going to try and see if they can get the MRI moved up. He put me back on Steroid pills just because he wants to be doing something to try and HOPE that it will help me with the symptoms while we wait for the MRI and he put me on an extra Fluid pill a day, plus Valium for the balance issues/dizziness at times. Never heard of Valium being given for balance issues but the Pharmacist said it is true. So basically he tried to not let me see how concerned he was but I saw it in his face before he said anything when he looked at the hearing test results. Statistics are low that it could be a tumor BUT he said now I am MORE concerned. He also tries to keep me from worrying too much. It's not like he can come out and say OH you have a tumor because he don't know. I think he got scared because he had stopped any kind of treatment waiting for the MRI and things are going down hill too fast so now he can say well we did all we could. Dr's!!!!!!!!!! So that's story.
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I'm so sorry that you have to wait so long for the MRI, I don't understand this at all.You are dealing with alot and I'm glad that you are able to come here where others are going through similar problems. Keep us posted, you are in my prayers.
Becky
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Thanks Becky! Because I have to go under general anesthesia for the MRI they say is the reason it's like scheduling a surgery. I had a panic attack trying to take it even an open MRI a few weeks ago. But now the Dr is going to try and push for an earlier date because he feels we need get it done ASAP. I am happy I've found this site and forum too. Thanks for the prayers!
Ray
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My ear kept waking me up all night and when I got up this morning the hum/roaring sound in my ear is much louder and I can bearly hear anything out my ear now. It was 50% loss Tuesday at the ENT. SHOULD I CALL THE DR'S AFTER HRS NUMBER? GO TO THE ER? WHAT? The Dr's office is trying to get the MRI moved up from April 25th but they have not hear back as of Friday. When I was in the office the other day he said he didn't know what would happen if I had went to the ER but now I am really scared. Any advise?
Ray
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Poor you, it is so hard to stay strong and focus on the impending MRI. I would suggested waiting for the MRI, if you go to the ER and update them with your current situation they would want to wait for your scheduled MRI as well. The good news is, if it is indeed AN you do have time, honestly. If you think of all of the tumours you could have, this is definitely not the worse. That's the way I look at it.
stay strong and keep venting, if that is what helps you. I was addicted to this site when I was first diagnosed with two facial nerve neuromas, it did help. it still helps. I am going for my first 6 month follow up MRI on 30th April and I am so apprehensive but I also know that even if there is growth, I have time to consider the best treatment option
Remember we are all just a keystroke away
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Thanks Lou! I does help to come here. I hope everything is good for your 6 month MRI. I finally called the on call ENT tonight and he of course is not my DR but he was very rude to me and said some things I didn't like and my DR wouldn't have said like.. "there is nothing we can do for the noise in your ear, ER is a wasted trip, you have nerve damage you will not recover the hearing you have lost etc" My DR has tried to be gentle in not wanting me to give up, the on call also said "oh the MRI is not going to help you only looking for an Acoustic Neuroma so you will have to learn to live with the loud noise" I am like oh my GOD! I know what the MRI is for and hopefully we can find out what the cause of the issue is and try and do something about NOT that I just have to live with my ear like this the rest of my life, I mean noise makes you want to chop your head off. Would be different if you just didn't have any hearing and no noise there (WHICH BY THE WAY I DON'T WANT TO LOSE ALL MY HEARING) but it seems so hopeless right now and the lack of concern really is overwhelming. He said that I should go in to see my DR on Monday and tell them the on call DR said for me to come in so they can put me 1st, but I hope it eases off some before then because I think it would be a wasted trip too. I am praying for relief in my symptoms all the way round and some peace.
Thanks for the response Lou!
Ray
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Hi Ray
My doctors in Australia are wonderful and say that I can phone them anytime I have a query. I usually come here to search for symptoms before I do that though. It's rather calming knowing that others are going through the same things.
If you play a radio quietly (I actually boom out Greenday) when the noise is loud it can take your mind off it. Even a fan or watch a TV show. While I type here I can barely hear the huge noise that rings in my AN side ear but I just stopped for a minute and there it is. :P
I had my inner ear as well as my eardrum taken out completely and it's worse than ever so in answer to that part of your question - not necessarily does the sound go away. Sorry.
Please update us on your visit.
Cheers,
Suu xxoo
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Suujoy,
Wow looks like you've been through a lot! Well at this point trying to get the TV or Radio,Music to a level that does not hurt my ear is a challenge. I sleep with a fan on so that helps but I take drugs to get to sleep. I've been dealing with the ringing in my ears since a child so if was just that and not the loud roar/hum on top of it I would be ok. I do everything I can to try and keep my mind off of it but yesterday it was so loud it sounded like my ear was going to explode. So since you had the inner and ear drum taken out and you still have the noise that means it is coming from the brain. I read something about that and there is supposed to be a new treatment but I can't remember what they call it. 6 months of the loud and louder and louder roar/hum just really got to me yesterday and I kinda lost it LOL. Not knowing is very hard too. I just wonder how many people are able to work with all these things going on? I've been unemployed since April 2010 due to being laid off except for a temp job I did for a few months. But if my condition continues to get worse and more hearing loss I am not sure I could work.
Thanks again for the comments
Ray
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The MRI date has been moved up to next week on April 11th. My follow up with the DR to go over the results is the next week on the 18th. Praise God they had a cancellation and we could move it up. My noise in the ear has improved since Sat so I've gotten a LITTLE relief. Not sure why but I'll take it.
Ray
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G'day again Ray
That is awsome news about getting your MRI moved up! I'll be here waiting for the outcome.
I find that the noise in my ear isn't as noticable if I don't concentrate on it. I try very hard to keep busy.
At night is my worst time. If I'm half sitting up in bed or if I'm laying a certain way, I get a buzzing like there's a bee in my ear! My doc keeps assuring me that it's the nerve endings that cause it and seeing he's the one with the certificates I will let him have it his way LOL
When the buzzing or ringing gets so bad that I want to stick a pillow inside my head I take a valium to calm down.
I didn't think I'd get used it but knowing why it's happening helps and trying to take my mind off it is the other thing that helps.
I have a layman's point of view on tinnitus - why can't they tie the nerve off :P I'm going to ask that question on my next visit so watch this space. ;D
Hugs as always,
Suu xxoo
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Hey, Ray...sorry things continue to get worse for you - glad your MRI has been moved up, though...hopefully, you will know the results of it very quickly.
As Suu mentioned, unfortunately, tinnitus does not usually go away after AN treatment (there have been a few here who have had it go away, though!). However, if it doesn't, people usually learn to cope with it...there are "treatments" which can help people cope if it continues to be debilitating to you. They are not quick and not cheap, but docs are having some success. In the meantime, maybe try to get one of those sound machines for sleeping at night? The ANA symposium last year had a session on tinnitus - the cd recording of the session is avail from the ANA office if you'd like to listen to it. It explains tinnitus in great detail as well as some of the treatments docs are trying w/ patients who suffer greatly.
We will be waiting to know your results - certainly wishing you the best!
Cindy
PS - was up in Easley this Saturday - I thought of you and "waved" to you while I was up there ;)
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Thanks cindy for the info. If I only had the ringing in my ear I can deal with that because I've had that since childhood and I sleep with a fan on, when I was 12 I was having to play the radio just to sleep. The other noises roar/hum is whats so hard to tell with. Which I guess come under the same heading of tinnitus. The follow up visit for the results will be on the 18th so another 7 days after the MRI. I will have a copy of the MRI on CD to take to my Dr and I am sure I will be tempted to look at the images. I know what to look for LOL I've researched so much.
Ray
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Hey, Ray...sorry things continue to get worse for you - glad your MRI has been moved up, though...hopefully, you will know the results of it very quickly.
As Suu mentioned, unfortunately, tinnitus does not usually go away after AN treatment (there have been a few here who have had it go away, though!). However, if it doesn't, people usually learn to cope with it...there are "treatments" which can help people cope if it continues to be debilitating to you. They are not quick and not cheap, but docs are having some success. In the meantime, maybe try to get one of those sound machines for sleeping at night? The ANA symposium last year had a session on tinnitus - the cd recording of the session is avail from the ANA office if you'd like to listen to it. It explains tinnitus in great detail as well as some of the treatments docs are trying w/ patients who suffer greatly.
We will be waiting to know your results - certainly wishing you the best!
Cindy
PS - was up in Easley this Saturday - I thought of you and "waved" to you while I was up there ;)
Cindy, what are those treatments you mentioned about tinnitus would like to know I am having great difficulty dealing with mine.
Thank you
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G'day again Ray
That is awsome news about getting your MRI moved up! I'll be here waiting for the outcome.
I find that the noise in my ear isn't as noticable if I don't concentrate on it. I try very hard to keep busy.
At night is my worst time. If I'm half sitting up in bed or if I'm laying a certain way, I get a buzzing like there's a bee in my ear! My doc keeps assuring me that it's the nerve endings that cause it and seeing he's the one with the certificates I will let him have it his way LOL
When the buzzing or ringing gets so bad that I want to stick a pillow inside my head I take a valium to calm down.
I didn't think I'd get used it but knowing why it's happening helps and trying to take my mind off it is the other thing that helps.
I have a layman's point of view on tinnitus - why can't they tie the nerve off :P I'm going to ask that question on my next visit so watch this space. ;D
Hugs as always,
Suu xxoo
Thank you for your posts love reading them .. Have you tried Ambien to get a good nights sleep not one for medication but lately I will try anything they recommend?? Can I ask why you take valium and not the pill of choice lately prescribed by many doctors Xanax?
Best Wishes
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pjb,
I am already on 2 pills a day of Xanax for anxiety, I take ambien,2 unisom and 3 melatonin just to get to sleep at night as is! I have a high tolerance for drugs after going through 11 major surgeries in 12 yrs. They gave me 30 pills of Valium for balance issues and I don't know if they thought it would also calm me or not but it doesn't seem to help much. I can't imagine with the issues I am having that I would be one of those that would want to wait and watch if I had a big AN. I don't know how anyone deals with that. I hope I don't have an AN and all of this turns out to be a chronic meniere's disease which is still not something you want to have. Thank God the noise in my ear is nothing like it was Saturday or I would be in the nut house already. I was about to have a nervous break down after 6 months of loud roaring/hum and it kept increasing in loudness. I am not sure if the Steriods is helping or not but thank God for relief a little.
Ray
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pjb,
I am already on 2 pills a day of Xanax for anxiety, I take ambien,2 unisom and 3 melatonin just to get to sleep at night as is! I have a high tolerance for drugs after going through 11 major surgeries in 12 yrs. They gave me 30 pills of Valium for balance issues and I don't know if they thought it would also calm me or not but it doesn't seem to help much. I can't imagine with the issues I am having that I would be one of those that would want to wait and watch if I had a big AN. I don't know how anyone deals with that. I hope I don't have an AN and all of this turns out to be a chronic meniere's disease which is still not something you want to have. Thank God the noise in my ear is nothing like it was Saturday or I would be in the nut house already. I was about to have a nervous break down after 6 months of loud roaring/hum and it kept increasing in loudness. I am not sure if the Steriods is helping or not but thank God for relief a little.
Ray
Wow that is a lot of medication to sleep is the Melatonin the 5mg or now they have 10mg stinks when you have a high tolerance and all that medication cannot be good for the stomach my daughter is like that....I was on Xanax and took myself off thinking of going back I think the tinnitus is worse..I did get a Widex and it does help a little any little bit is good. Hoping it isn't an AN but like you said Meniere's disease is no fun either my friend has that. Have you tried the Metrocyzine spelling wrong for dizziness maybe that might help a little ??... That is a lot of surgeries hoping you find good news.
Best Wishes,
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pjb,
The Melatonin is 3mg per tab, I was not taking that much until I had the ear issue started. It does seem the Steriods is actually helping this time not sure why, seems it is used with people who have a AN so if it does help with the symptoms of noise in the ear that doesn't automatically mean there is no AN does it? I know nothing about all this..., seems today the noise on top of the usual ringing is more of a buzz almost feels like my ear itself is vibrating but kinda seems the hearing might be a little better? LOL its so weird. As for Metrocyzine I've never heard of that. I am having more issues with balance.. yesterday my balance so bad I had issues going up the stairs more to the point I had to stop, which my townhome is 2 stories and my bedroom is upstairs. I know myself I will get that CD of the images next week and will be trying to look at them LOL
Ray
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Ray: did a doctor tell you to use melatonin? Just curious because I developed a sleep disorder years after my AN was removed and the specialist told me people who have had brain surgery, and thus scar tissue in the noggin', shouldn't use it, not safe.
You may find your sleeping problems improved once the tumor is removed, mine did.......my sleep disorder now is due to shift work.
Kathleen
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Ray: did a doctor tell you to use melatonin? Just curious because I developed a sleep disorder years after my AN was removed and the specialist told me people who have had brain surgery, and thus scar tissue in the noggin', shouldn't use it, not safe.
You may find your sleeping problems improved once the tumor is removed, mine did.......my sleep disorder now is due to shift work.
Kathleen
I am interested in that your doctor said not to use it I was given Ambien to sleep and sometimes I do Melatonin instead now really concerned if I am doing more harm than good I just want to sleep?
Best Wishes
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Kathleen,
I've not been diagnosed with an AN as of yet that is the reason for the upcoming MRI to see if there is one. I have been using Melatonin for many years and have not discussed my sleeping issues with the ENT yet. There were times I only used Ambien and last November when the ear issue started I had to increase due to the noise in my ear. But Melatonin I've been told by a PCP is safe because it not a drug but who knows what is safe anymore. I've had sleeping issues for probably 30+ yrs., well I had to have music playing softly when I was a child because of the ringing in my ears. As I got old came the real insomnia so it's been a life long issue with me. It's been probably 20 yrs since I had a good night of sleep where I didn't wake up at all. I wake up every time I turn over now.
Ray
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pjb,
The Melatonin is 3mg per tab, I was not taking that much until I had the ear issue started. It does seem the Steriods is actually helping this time not sure why, seems it is used with people who have a AN so if it does help with the symptoms of noise in the ear that doesn't automatically mean there is no AN does it? I know nothing about all this..., seems today the noise on top of the usual ringing is more of a buzz almost feels like my ear itself is vibrating but kinda seems the hearing might be a little better? LOL its so weird. As for Metrocyzine I've never heard of that. I am having more issues with balance.. yesterday my balance so bad I had issues going up the stairs more to the point I had to stop, which my townhome is 2 stories and my bedroom is upstairs. I know myself I will get that CD of the images next week and will be trying to look at them LOL
Ray
Praying that CD shows a simple fix as far as the med I mentioned I could get the correct spelling if you need it, it is used for dizziness and did work for me prior to my surgery.. I was using the 5mg and just bought the 10mg because I was taking 2 of the 5mg..but back on Ambien instead of the Melatonin. Now I just read someone said that their doctor said not to use Melatonin after brain surgery okay another thing to be concerned with... As far as the stairs I also have my bedroom on the 2nd floor and when things get too bad I go up on my butt...whatever works!
Hoping today is a little better.
Best Wishes,
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pjb,
Hopefully I will not have to start going up the stairs on my butt! LOL I've lived in 2 story homes through all the bad abdominal surgeries and somehow I managed to get up those stairs when I needed to and through most of those surgeries I can home alone with no help so I am pretty tough but now I do realize balance issues can put you down. The noises in my ear seems to evolving from one frequency to another, right now I have a buzz,hum and the ringing LOL.. enough to drive you crazy but nothing as loud as it was this Saturday. WE had a weather front come through with bad storms and I think as in everything the barometric pressure changes can affect your ear issues no matter what they are just like arthritis and other things. Thank God it is not that bad everyday right now, and maybe the steroids have helped a little too.
Ray
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pjb,
WE had a weather front come through with bad storms and I think as in everything the barometric pressure changes can affect your ear issues no matter what they are just like arthritis and other things. Ray
I was wondering Saturday if the weather could make my balance issues worse. We went to an art festival, there was a horrible thunder storm and my balance was way worse than normal. Would be interesting to find out. I'm sure the barometric pressure does affect it. Oh goody, hurricane season ought to be real fun!!!! ;D
Karen
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chloes,
I think the pressure does affect everything. Today has been a really bad day, the noise in my ear is back very loud and 80% of today both eyes the lids have been twitching upper and lower, wow at the same time. Now that is something really hard to deal with. Anybody ever gone insane over these symptoms? wow.
Ray
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Anybody ever gone insane over these symptoms? wow.
Ray
I hope not but some days I think it's possible. :D
Karen
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pjb,
WE had a weather front come through with bad storms and I think as in everything the barometric pressure changes can affect your ear issues no matter what they are just like arthritis and other things. Ray
I was wondering Saturday if the weather could make my balance issues worse. We went to an art festival, there was a horrible thunder storm and my balance was way worse than normal. Would be interesting to find out. I'm sure the barometric pressure does affect it. Oh goody, hurricane season ought to be real fun!!!! ;D
Karen
Weather definitely has a lot to do with it a very intelligent woman I use to work with swore by the barometric pressure both for arthritis and her Meniere's disease..
Best Wishes,
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chloes,
I think the pressure does affect everything. Today has been a really bad day, the noise in my ear is back very loud and 80% of today both eyes the lids have been twitching upper and lower, wow at the same time. Now that is something really hard to deal with. Anybody ever gone insane over these symptoms? wow.
Ray
Not quite insane but getting close....
Best Wishes,
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pjb,
Hopefully I will not have to start going up the stairs on my butt! LOL I've lived in 2 story homes through all the bad abdominal surgeries and somehow I managed to get up those stairs when I needed to and through most of those surgeries I can home alone with no help so I am pretty tough but now I do realize balance issues can put you down. The noises in my ear seems to evolving from one frequency to another, right now I have a buzz,hum and the ringing LOL.. enough to drive you crazy but nothing as loud as it was this Saturday. WE had a weather front come through with bad storms and I think as in everything the barometric pressure changes can affect your ear issues no matter what they are just like arthritis and other things. Thank God it is not that bad everyday right now, and maybe the steroids have helped a little too.
Ray
Hoping the steroids help I went back on Xanax I have been off it for a month or so but started again trying not to be dependent on them but now it is quality of life... The tinnitus others have said that they ignore it I am not at that point right now...Like I think I said before I think, I have the Widex and the Zen is somewhat soothing there are other settings that do help a little in loud environments..At least you know you have the butt as backup if need be and hoping you will not have to resort to that...Wishing you a good day!
Best Wishes,
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pjb,
I just hate to think all these symptoms we have to live with the rest of our lives no matter if I had the tumor or Meniere's disease. My balance is getting worse and other symptoms that the DR doesn't even know about because after he said something about looking for an AN he told me not to research it because it would upset me., so now I am afraid to tell him everything because he knows I've looked but I've got symptoms that I had been having and come to find out they are related but the MRI next week will show hopefully nothing but space in my head LOL
Ray
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pjb,
but the MRI next week will show hopefully nothing but space in my head LOL
Ray
Ray
Thanks for a good chuckle on this, I really needed one today. ;D
Karen
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Better to laugh than to cry I always say! Glad I could help!
Ray
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I am suddenly experiencing Distance Vision issues, I can't see the TV clearly and driving, doesn't matter if I had my contacts in or my Glasses, my close up vision is perfect, I just had my eyes checked in January and this is just since I've been taking Steriods which I had 3 days left on. Could it be the Steriods? Or does an AN cause these issues?
Ray
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Ray: did a doctor tell you to use melatonin? Just curious because I developed a sleep disorder years after my AN was removed and the specialist told me people who have had brain surgery, and thus scar tissue in the noggin', shouldn't use it, not safe.
You may find your sleeping problems improved once the tumor is removed, mine did.......my sleep disorder now is due to shift work.
Kathleen
I am interested in that your doctor said not to use it I was given Ambien to sleep and sometimes I do Melatonin instead now really concerned if I am doing more harm than good I just want to sleep?
My doctor was addressing MY using Melatonin and you must remember I am post-op from AN, I think it's an issue to do with scar tissue from the surgery. Not sure about the use pre-op but you should just make sure it's OK with your doctor, they would know.
Kathleen
Best Wishes
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Kathleen,
I've never talked with my ENT about my sleeping issues, only been having issues with going to sleep and staying asleep probably 30 yrs. I will ask him about Melatonin though. Thanks :-)
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pjb,
I just hate to think all these symptoms we have to live with the rest of our lives no matter if I had the tumor or Meniere's disease. My balance is getting worse and other symptoms that the DR doesn't even know about because after he said something about looking for an AN he told me not to research it because it would upset me., so now I am afraid to tell him everything because he knows I've looked but I've got symptoms that I had been having and come to find out they are related but the MRI next week will show hopefully nothing but space in my head LOL
Ray
Love the nothing but space in your head.....Lol.... Glad we still have our sense of humor they cannot take that away from us...
Best Wishes,
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Yeah me too. If I could not laugh I would go crazy. My ear has gotten worse and today I can barely hear anything at all out of it so it's almost gone., I am so scared. The DR's do not want me to believe it could be a tumor and I am so anxious and dreading the MRI too., it's not funny but what to do? Take a day at a time.
Ray
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Yeah me too. If I could not laugh I would go crazy. My ear has gotten worse and today I can barely hear anything at all out of it so it's almost gone., I am so scared. The DR's do not want me to believe it could be a tumor and I am so anxious and dreading the MRI too., it's not funny but what to do? Take a day at a time.
Ray
I wish there was something to say to your statement of being scared but there isn't just hoping for the best and to know that we are all here if you need to vent. So easy to tell someone not to worry and not be anxious but come on impossible the only thing to try and do is keep yourself busy somehow and only you can decide as to what to do (i.e. read, walks etc.) try to surround yourself with positive things but with the ear it is difficult I try to put the t.v. louder but the noise still overrides it ???... Yes take one day at a time is all we can do but just to know that others can relate to us helps me I have found so many friends on another AN site that has helped me so much these past few weeks some have made me laugh so hard where my belly hurt it has been a very long time since I laughed that much.
Best Wishes,
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It's comforting to know we are not alone but at the same time some of the things I've read on here breaks my heart. People have complications from the surgery etc. Trust when I say almost every surgery I've ever had I had complications so I sure enough do not want to have any more but IF and that's a BIG IF according to the DR I have an AN with the symptoms I'm having it would have to be a large one, if not then I must have the worst case of meniere's disease known to man! LOL It just don't fit. But the thought of never getting my hearing back in my left ear is the worst part. But if other people can deal with it I can too. Thanks again for the encouragement
Ray
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Sorry it's taken so long to say something as it is only now that I came across this thread.
Ray, I can empathize with what you're going through. Good luck on your MRI this Wednesday.
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Thanks Crazycat,
I am heading out in a few for my pre-op visit with the Anesthesiologist since I am going under General. My hearing got worse over the weekend and now I have very little left in my left ear. The roar is so loud I can't get a TV loud enough to over ride it and loud sounds are piercing so no relief for 3 days now. I had a little break in that roar last week but my hearing never changed until the weekend for the worse. Weirdest thing I've ever had to deal with.
Ray
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Thanks Crazycat,
I am heading out in a few for my pre-op visit with the Anesthesiologist since I am going under General. My hearing got worse over the weekend and now I have very little left in my left ear. The roar is so loud I can't get a TV loud enough to over ride it and loud sounds are piercing so no relief for 3 days now. I had a little break in that roar last week but my hearing never changed until the weekend for the worse. Weirdest thing I've ever had to deal with.
Ray
Just wanted to say good luck today and my prayers are with you for the MRI and will try to come on the computer at the end of the week...My daughter is having surgery Thursday so this week will be crazy here...Hope all goes well with the MRI and I am sure if it does happen to be a tumor they will notify the doctor that day that is what happened to me I had an appointment a week following the test but the doctor called me a few hours after the test. But every place has a different policy sometimes the hard part is the waiting....Good Luck
Best Wishes,
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Ray:
With the barometric pressure change and stress you are going through---you will notice the sound much louder at times in your ear. (also, the same with the face hurting more, on/off than other times) I had eye twitching along with the usual symptoms. (metal taste, difficulty swallowing, half my tongue numb and facial numbness) The pressure in my head at times and the rolling lines are enough to scare anyone. The pressure in my head was so bad I'd have to sit down for a while or black-out. The sound is awful in the ear but, we must live with it. You have a good support group going on this thread, already.
Palace
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thanks pjb and Palace! I found out at the pre-op they put you the table at the MRI machine to put you under... i am like?? really I have to see the machine that makes me have a panic attack and you going to put me under? good luck! LOL The only symptom I don't have is the metallic taste in my mouth Palace. The eye twitches are about 80% of my day now along with all the other stuff... I am have a lot of joking issues when I eat, which I never have been one to joke easily.. I am a singer and I try at all cost NOT to cough always thinking of the stress on the vocal chords but now I can't hardly sing anyway, not just because of my ear and my voice sounds different but my voice is staying hoarse all the time. I pray NO AN., my followup with the ENT is the 19th but I will have a CD of the images to take to him so I don't know if I will be brave enough to try and look myself or not.
Thanks for the support it helps a lot.
Ray
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You must be severely claustrophobic if you need to be sedated for the MRI. I'm very curious to see the results of your scan.
I know it's scary but if it is an AN, you'll go through some stuff but you'll be alright in the end. Take it from us.
If it's any consolation, I too am a musician and can still play.
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Crazycat.
Thanks for the encouragement! I think I will be fine in the end, right now so much is going on and you know there is adjustments your tries to make to make up for the hearing loss and my voice sounds like someone else right now LOL., I've always been proud of how smooth my singing voice is and that's what I have heard from so many people so to have a raspyness to my voice does not sound right LOL but I will be ok. I've done enough writing,recording and traveling if I never do it again it's more than most will ever do, but of course I don't think at 52 almost 53 I am ready to retire.
All my physical and everything I am cleared for General Anesthesia., and YES I am severely claustrophobic but they say it is quite common, I could not even take the open MRI I tried that for a few weeks ago because your head is in a helmet type thing,, no no I freaked out. LOL It is what it is.
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Hello Ray:
I had a technician who put a folded towel over my eyes as soon as I lay down however, I hadn't ask for it. Your system is used to Valium so, you would need another sedative if you ever reach the point for your MRI series, where you don't use the general anesthetic.
You wouldn't like the Cyberknife where they fit you for the facial cage/mask.
Let's hope for the best!
Palace
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thanks pjb and Palace! I found out at the pre-op they put you the table at the MRI machine to put you under... i am like?? really I have to see the machine that makes me have a panic attack and you going to put me under? good luck! LOL The only symptom I don't have is the metallic taste in my mouth Palace. The eye twitches are about 80% of my day now along with all the other stuff... I am have a lot of joking issues when I eat, which I never have been one to joke easily.. I am a singer and I try at all cost NOT to cough always thinking of the stress on the vocal chords but now I can't hardly sing anyway, not just because of my ear and my voice sounds different but my voice is staying hoarse all the time. I pray NO AN., my followup with the ENT is the 19th but I will have a CD of the images to take to him so I don't know if I will be brave enough to try and look myself or not.
Thanks for the support it helps a lot.
Ray
We are all praying for no AN....and definitely do not look sometimes things are best left to the professionals why add more stress you might think something is there that may not be .. I know it is tough but time does fly as we over 50 know so before you know it your appointment will be here and praying for good news... Rest the voice and the rest of you and you have to find something that will keep you busy. I did not start with all those computer games that people are crazy about but maybe try doing those for a while just to keep you busy....Here if you need to vent and never stop the prayers...
Best Wishes,
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I am thinking trying to look at the images might make me sick LOL., Not sure how I would react but it will be tempting. My followup is not until the 19th. I am anxious I cause I feel sick this morning , legs cramped all night., afraid my potassium is low, which they did blood work yesterday and potassium is one thing they checked.
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Hi Ray:
To people who didn't go through all this would think of it as, "over-the-top" drama. My purpose on this post is to remind you to make sure the gadolinium is used in your MRI so, you won't have to go through that part again. (metal injection done near the end of the scans, with my experience)
________________________________________________________________________________________________________
Gadolinium (play /ˌɡædɵˈlɪniəm/ GAD-o-LIN-ee-əm) is a chemical element with the symbol Gd and atomic number 64. It is a silvery-white, malleable and ductile rare-earth metal. It is found in nature only in combined (salt) form. Gadolinium was first detected spectroscopically in 1880 by de Marignac who separated its oxide and is credited with its discovery. It is named for gadolinite, one of the minerals in which it was found, in turn named for chemist Johan Gadolin. The metal was isolated by Lecoq de Boisbaudran in 1886.
Gadolinium metal possesses unusual metallurgic properties, with as little as 1% of gadolinium improving the workability and resistance of iron, chromium, and related alloys to high temperatures and oxidation. Gadolinium as a metal or salt has exceptionally high absorption of neutrons and therefore is used for shielding in neutron radiography and in nuclear reactors. Like most rare earths, gadolinium forms trivalent ions which have fluorescent properties. Gd (III) salts have therefore been used as green phosphors in various applications.
The Gd(III) ion occurring in water-soluble salts is quite toxic to mammals. However, chelated Gd(III) compounds are far less toxic because they carry Gd(III) through the kidneys and out of the body before the free ion can be released into tissue. Because of its paramagnetic properties, solutions of chelated organic gadolinium complexes are used as intravenously administered gadolinium-based MRI contrast agents in medical magnetic resonance imaging. However, in a small minority of patients with renal failure, at least four such agents have been associated with development of the rare nodular inflammatory disease nephrogenic systemic fibrosis. This is thought to be due to gadolinium ion itself, since Gd(III) carrier molecules associated with the disease differ.
Pal
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they are using the contrast toward the end of the MRI for sure., Only way I can do this is General Anesthesia., and still not looking forward to it, I am sick today on my stomach i think from Chinese food or my body just getting over all the Steroids.
ray
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Well the day has finally arrived for my MRI. I am dreading it and also looking forward to getting it over. My ear is worse than ever and now I can bearly hearing anything out of it. I still pray it is not an AN.. these Dr's down here have probably never seen one. I have to be at the hospital at 11am and MRI scheduled for 12:30
Ray
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Well the day has finally arrived for my MRI. I am dreading it and also looking forward to getting it over. My ear is worse than ever and now I can bearly hearing anything out of it. I still pray it is not an AN.. these Dr's down here have probably never seen one. I have to be at the hospital at 11am and MRI scheduled for 12:30
Ray
My thoughts and prayers will be with you today.....
Best Wishes,
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Ray ~
You should be just finishing the MRI scan (1:20 P.M. EDT) now. I hope it went well for you and doesn't indicate an acoustic neuroma but something less daunting that can be effectively treated to relieve your acute hearing loss.
Jim
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It will take extra time for the anesthetic to wear off before being released. It's an instant world these days, to a certain limit.
Sometimes waiting is the hardest part of most anything as we all know on this forum.
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I made it through the MRI fine no issues other than raw throat from the breathing tube and some sore places where they stuffed me in the tunnel LOL.. my ear has gone completely crazy tonight, with high pitched hum/low pitched hum/ and ringing on top.. and when I say LOUD I mean LOUD>>> I guess anesthesia has worn off LOL I tried to look at the images hehe! but I can't tell anything because I couldn't figure out how to look at one image alone, they are all too small. I tried., I do have some brains and funny shaped head though LOL
Ray
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I made it through the MRI fine no issues other than raw throat from the breathing tube and some sore places where they stuffed me in the tunnel LOL.. my ear has gone completely crazy tonight, with high pitched hum/low pitched hum/ and ringing on top.. and when I say LOUD I mean LOUD>>> I guess anesthesia has worn off LOL I tried to look at the images hehe! but I can't tell anything because I couldn't figure out how to look at one image alone, they are all too small. I tried., I do have some brains and funny shaped head though LOL
Ray
Glad the MRI went well with minor problems hoping when you looked at the MRI if there was something there unless really small you would have been able to see it and if nothing was obvious that is a good sign but did you put it on your computer that is what my son did and was clear when you looked at both sides ... Hoping for a clean MRI and a permanent fix for the noise.
Best Wishes
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I tried to look at the pics but they were small and I could not open one image at a time, and tried to copy them as jpeg's to my computer but it would not work either.
Ray
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Ray:
Twice I had to have the format changed (the image center) because, they put it in the wrong format for Stanford to read. I had to deal with it myself! (which really shouldn't be)
The AN looks like a miss-shaped coin or fluffy cotton ball but, unless you can really read scans (I've been trained in dental X-rays) then get your answer from the radiologist (or passed to your ENT) ASAP.
I had to wait a long time before I got my quick phone call from the ENT, (in-between patients) that I have a brain tumor and I'd be set-up with Stanford. ("Good Bye, click") It's a good thing I've been through the 23 surgeries I have in a way. I'm strong! (however, wearing thin now)
Congratulations Ray for getting the MRI out of the way,
Palace
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Palace I see the ENT next week so he can look at the CD and he will have the report from the radiologist by then. I think I see something in one image but I can't enlarge it. I guess it just won't work right on my pc., but I am not going to stress anymore. I just have to wait. I just hope we have an answer as to what is going on if not AN , what is it?
Ray
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I don't think Thursday will get here soon enough. I suspect the DR will say did not find anything and I am crazy,, my hearing is going for no reason and there is nothing they can do. That is my biggest fear.
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Thurs. is here......
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Thurs. is here......
Prayers and thoughts coming your way...
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Thanks pjb and Palace yes today is D day! My appt is at 1:45 EDT today. I hope he has an answer and a plan of attack. 1st of all NO tumor. I will post when I get back from my appt.
Ray
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Ray:
9:00 PM over there and we hope you got good news.
Palace
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OK sorry I haven't posted before now. I needed some down time. I do NOT have a AN! So the DR is convinced it is meniere's Disease which if you know anything about it that's not a good thing either. It is a chronic progressive disease. My hearing test today showed a little improvement but by now he has enough proof to say that some of the loss is perm BUT I do have allergies but never had a study done so this is what he says is the next step because Allergies can really make Meniere's Disease much worse. Unfortunately they did not get the Report from the Radiologist which he really does want to read because he said the eye twitches and numb upper lip does not go along with Meniere's which is a concern. Just to make sure there is not something else going on. He was only looking at the ear images. If there is something else he will send me to a neurologist. But it is not normal to have these other symptoms. Also I am a person with high blood pressure and on meds for 8 or so years and when went for the MRI my pressure was 98/64 which is LOW for me and today at the Dr's office it checked the exact same 98/64. Mine usually is anywhere from 125/80 to even 140/96 but the only other times my pressure has been that low was after surgery in the hospital and they were checking it every hr so I felt safe. I checked my pressure at 9:30 and it was 111/64. The Dr today said maybe if it does not come up I should talk to my PCP dr. We will see.. I just never have low pressure. so mixed bag of tricks today LOL.. great news of no tumor but I still have a bad disease and something else is a foot. So more prayers., Thanks everyone for listening. I guess since I do not have an AN I should maybe leave the site. Thanks for the welcome
Ray
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OK sorry I haven't posted before now. I needed some down time. I do NOT have a AN! So the DR is convinced it is meniere's Disease which if you know anything about it that's not a good thing either. It is a chronic progressive disease. My hearing test today showed a little improvement but by now he has enough proof to say that some of the loss is perm BUT I do have allergies but never had a study done so this is what he says is the next step because Allergies can really make Meniere's Disease much worse. Unfortunately they did not get the Report from the Radiologist which he really does want to read because he said the eye twitches and numb upper lip does not go along with Meniere's which is a concern. Just to make sure there is not something else going on. He was only looking at the ear images. If there is something else he will send me to a neurologist. But it is not normal to have these other symptoms. Also I am a person with high blood pressure and on meds for 8 or so years and when went for the MRI my pressure was 98/64 which is LOW for me and today at the Dr's office it checked the exact same 98/64. Mine usually is anywhere from 125/80 to even 140/96 but the only other times my pressure has been that low was after surgery in the hospital and they were checking it every hr so I felt safe. I checked my pressure at 9:30 and it was 111/64. The Dr today said maybe if it does not come up I should talk to my PCP dr. We will see.. I just never have low pressure. so mixed bag of tricks today LOL.. great news of no tumor but I still have a bad disease and something else is a foot. So more prayers., Thanks everyone for listening. I guess since I do not have an AN I should maybe leave the site. Thanks for the welcome
Ray
So happy you do not have an AN but my friend has Meniere's Disease and it can be controlled so that is good you have to avoid salt that is the biggest problem and makes a huge difference also medication for dizziness helps. So you are very lucky this is not at all that bad of a disease...Good luck and so happy for you.
Best Wishes,
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Thanks and I am trying to cut back on my salt which I haven't used regular salt in 30 yrs but I am trying to get back on the Lite Salt I do use. Also he thinks the hearing loss most of it is perm by now, but I am at a stand still with the same symptoms and hearing loss waiting to get a allergy test to see what I am allergic to because that may be making it worse but I don't have insurance and they want the money upfront so the Scheduler at the Dr's office is trying to find help so we wait and nothing has changed. My case has never been even close to typical for Meniere's normally people have an attack for a few days to a week, mine has been 6 months now and progressive so they I don't think know what to do with me LOL
Ry
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"Also he thinks the hearing loss most of it is perm by now, but I am at a stand still with the same symptoms and hearing loss waiting to get a allergy test to see what I am allergic to because that may be making it worse but I don't have insurance and they want the money upfront so the Scheduler at the Dr's office is trying to find help so we wait and nothing has changed."
Dude,
That's got to be the best run-on sentence I've seen in years! ;-)
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Crazycat I am just a country hick what do you expect? LOL
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No problem, just ribbing you.
What's important is that you don't have to deal with surgery or radiation. Congrats on the A.N. free diagnosis! I don't know enough about Meniere's to say anything other than I hope it can be contained or controlled.
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Thanks and I am trying to cut back on my salt which I haven't used regular salt in 30 yrs but I am trying to get back on the Lite Salt I do use. Also he thinks the hearing loss most of it is perm by now, but I am at a stand still with the same symptoms and hearing loss waiting to get a allergy test to see what I am allergic to because that may be making it worse but I don't have insurance and they want the money upfront so the Scheduler at the Dr's office is trying to find help so we wait and nothing has changed. My case has never been even close to typical for Meniere's normally people have an attack for a few days to a week, mine has been 6 months now and progressive so they I don't think know what to do with me LOL
Ry
My coworker was the same way was bad for many months finally got herself down to the lowest possible salt intact I forgot the numbers and religiously kept to it and finally starting feeling a little better it did take time but if you do not read all labels for salt/sodium content because you cannot believe the things that have salt in it so now read read read is the key in getting it under control. Also try Vestibular Therapy I believe that is good for Meniere's disease as well as an AN.
Best Wishes,
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pjb,
The DR is so convinced that allergies is making it so much worse and that's the next step but I do not have the money to pay for the testing upfront without insurance so until I can find some help I am at a standstill and very depressed and frustrated.
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Crazycat I knew you just joking and it made me laugh which I needed that day. Meniere's Disease is a chronic disease, some people have it much worse than others and most only last a few days at a time or a week. My case attack has been since November last year so my case it not your normal case and my DR has never had someone like me. I just hope I don't go insane from the noise in my ear because at times I feel I am going to lose it.
Ray
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That stinks with the insurance hoping you can find help with that some doctors, hospitals will work with people and see what government help you can try for .... All else fails still go for the test even if you pay a $5.00 a week or a month you are still showing good faith and you want to be paying them there is nothing they can do. I did that in my job we let people pay us a little at a time and they were very grateful for that and they did finally pay it some places still have compassion. One minister still writes to me thanking me that I understood and waited for his payment sends me cards every year..remember your health comes first! Just thought with my friend with the severe Meniere's disease she has a cyst on the brain that has been stable for many years wondering if that is a connection ?.. You wonder why some people get certain things and others do not there has to be a common bond amongst certain illnesses and why some genius should be able to figure it out by now??
Best Wishes
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Ray:
With my experience in the medical-field, I'm sure if you stay on the quest to "pay in good faith" you can get treatment regarding the allergy issue. (or help getting government assistance) The key is, you must stay "hot on the search and project." I know it is tough---I've been through it myself.
Palace
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Ray,
I'm sorry you're in a tough spot with the insurance coverage. I wish I could suggest or offer an easy solution. I don't know what to say.
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Thanks All! I have a host of medical issues other than my ear I've mentioned and need at least 3 surgeries that are being put off and maybe another hernia where they did the abdominal wall reconstruction in 2010 so all of this currently and over the last 12 yrs has and is taking a toll on me. Depression and anxiety attacks have gotten much much worse. I am just a mess right now LOL.. I need help
Ray
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Ray:
1. Perhaps you take samE if it's Okay by your doctors.
2. Not getting hooked on addicting meds and do Yoga, if you aren't already.
3. Take one day at at time like all of us AN people, although you're on this sight and have other issues.
4. Do something special for yourself daily and true, monies seem to solve some stress issues---work on that one.
5. As for the financial issues; it's not so easy in these "difficult political times" however, being creative helps.
6. The art/craft of music helps, I'm sure.
7. Back to solving monetary issues to help your heath might be your best target to ease "panic attacks and worry."
8. I've been on my own since my 19th birthday and know entrepreneur ways to "get-by" and pay the bills.