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-   -   new to board - fighting a meniere's battle (http://www.healthboards.com/boards/inner-ear-disorders/270528-new-board-fighting-menieres-battle.html)

trentina 04-04-2005 12:35 PM

new to board - fighting a meniere's battle
 
Hi,
I just found this board and was reading some threads, but couldn't find anyone with my story yet. So, I thought I'd post and see if anyone has been down this road.
I have Meneire's that onset with the birth of my daughter in 1995. Went into remission in Jan 1997, symptoms returned in Feb 2004. During my remission I felt perfect: no symptoms, normal diet, no meds.
I started the low salt thing again. Then, I deteriorated quickly and began having 2-3 hr. vertigo attacks with some serious nausea. I take valium which started helping less and less during full blown attacks. My ent put me on a diuretic which helped some but still had some bad attacks. Then i think i made a mistake: I went ahead with (sorry I don't know medical terms) putting the wick through the eardrum to administer gentamycin. At first it seemed to help but after one week of treatment i started getting some spinning and balance problems, but not full blown attacks. My ent had me do the full 3 weeks of gentamycin treatment and then said that was all he was allowed to do. He pulled the wick 10 days ago. For a few days I would be okay with an occasional feeling of being off balance. But now, for the last 6 days I have been constantly off balance and things are turning slowly, and occasionally moderately spinning. Thank God not bad enough to have me flat out on the floor and there is little to no nausea. It seems like it is never going to stop. My ent told me he had done all he could for me and referred me to Phila******a. Unfortunately the doctor in Philly can't see me until July. I do need to go back to my ent for him to check if the hole in my eardrum is closing. Right now his office has been closed for a few days and I'm waiting until he open tomorrow to contact him.
Right now I feel like the gentamycin did some damage but not enough to kill off my balance in that ear like it was supposed to do. But, i'm also wondering now if I'm just getting water in my ear because the hole is not closed yet.
I guess I'm just trying to find someone who may have had a similar experience. My ent is not much help right now because he has never had this treatment not work on someone, and he had never had a patient who has gotten any worse than i am now.
Thanks for any help or support you can give me.
Oh, another thing, I've noticed you use a lot of abbreviations for medical terms here. I don't know what they mean, is there a list of definitions or something?
Thanks again.

tip2mol 04-04-2005 12:56 PM

Re: new to board - fighting a meniere's battle
 
Hi Tretina,

I also suffer from Meniere's disease and an allergic condition. I am unable to work due to the severity of the symptoms. I have some good days which I treasure and then some horrible days which I just try to cope with.
I am now awaiting our new insurance to kick in so I can start looking into the process of getting the Meniette device. They won't let us post websites here, but look it up and it will tell all about it. I think over 1/2 of the people who use it have good results in that it helps with the pressure in the affected ear and also with the vertigo. The vertigo is what gets me down so badly. I am always off balance but am learning to compensate for it. There is also a wonderful Meniere's talk forum you might want to seach for, once again can't post it here though! I know how frustrating this disease is, especially with having children and trying to make life somewhat normal for them. Due to the unpredictability and severity of my attacks, I can no longer drive without another adult being with me for safety reasons.

I wish you the best and hope that you will find something soon that will help you.

dizzy2 04-04-2005 01:06 PM

Re: new to board - fighting a meniere's battle
 
Trentina, Hi and welcome to the board. I am also new since just last week and I can't tell you how much support I have gotten thus far! My story is not like yours, but we can all relate to the impact that vertigo, dizziness, etc... has on your life! I have kids too and have a pretty full life and just in the 5 months I have been dealing with this, it has really affected my whole life! There have been times that I can't drive and times that I have driven even though I probably should not have. Trying to do everyday things seem so hard at times. You are doing whatever you can to find help and I hope that you do! Having poeple to talk to that understand helps....alot! Good luck. :wave:

crazylabyrinth 04-04-2005 01:33 PM

Re: new to board - fighting a meniere's battle
 
Hi and welcome. I think the list of definitions is in the infomration archive at the top of the board.

Afraid I dont know v much about menieres but I do know that gentamicin is a bit of a nightmare - not sure hw it could help menieres either...but anyway - it's been done now so try not to worry about it - I really hope the dizziness settles soon.

xxx

trentina 04-04-2005 07:33 PM

Re: new to board - fighting a meniere's battle
 
thanks for all the replies and welcomes. yes, the philly web site for UPenn is where i'm going. thanks for posting this, it had some interesting info in it (like the gentamicin can get rid of the vertigo attacks but not necessarily the imbalance. sigh).
another woman in my church congregation went through this 2 years ago and had the same treatment, only she had the gentimicin shot once a week for 4 weeks, and i had the wick with the 3x a day drops for 3 weeks. her vertigo and imbalance was completely cured, but she did lose her hearing in the affected ear. the drop technique was developed to try to save the hearing. at this point if a couple of good direct shots would finish off the job i'd be happy to lose the hearing, since it is more than 50% gone in that ear anyway.
the docs in philly are suppose to be really good but gee, I have to wait over three months get in!
i do go down there for a balance test in april 26 (but no doctor visit). it will be interesting to see what that shows. when i made the appt., they said if the balance test shows i need physical therapy, i can get that in the mean time, to which I replied, "i live 1.5 hours away, i don't think PT is going to be happening down there!"
it's all very frustrating because i feel like i'm fighting the clock along with the disease. meanwhile driving is not always possible, i have a 9 year old to be functional for, and to top it off, i'm supposed to graduate from community college in May after 3 years of hard work. now i may not even be able to put my education to use. oh and did i mention i have ringing in my "good" ear now? ugh.
sorry for all the venting. i just haven't had many folks to talk to about this. i guess at this point i'm looking for a miracle. sorry to go on like this, i'll try to be more cheerful next time.

Subs30 04-05-2005 05:37 AM

Re: new to board - fighting a meniere's battle
 
Hi

Not sure which direction from Philly---you are---but some of Balance Center Doc's also have hours at their Radnor Fac---I did the VRT at their Phoenixville Fac...There are only a Few that are considered "Centers of Excellence" in this area,i.e., Northwestern Univ, Univ of Penn, John Hopkins, etc...Univ of Penn is one of the best....If you look in the "Sticky" above....you will see a item on "chronic dizziness" by Dr Shepard...he is the Director of the Balance Center at the Univ of Penn---if their procedures are the same as when I went through it---with them---he will be the Doc---that pulls it all together at the end of the process---and---provides the Dx and treatment

:cool:

trentina 04-05-2005 05:29 PM

Re: new to board - fighting a meniere's battle
 
thanks again. i was wondering about johns hopkins as opposed to penn. i'm closer to penn. my appt. is with Bigelow and my other choice would be Ruckenstein. i'm not seeing a Shepard on the web site you gave me. anyway, i've heard good things about bigelow.
I'm not sure what you mean by the "sticky" above i should look at. i'm not only new to this board but to the whole healthboard forum. i need to look at the archives to learn the "lay of the land"
I saw my ent today and will post an update in a new thread.

trentina 04-05-2005 06:52 PM

Re: new to board - fighting a meniere's battle
 
Hi Subs30,
Wow, you are full of great info. i did find the sticky after my last post. started looking at some of the sites. it's hard for me to read much online these days in my current condition. also it seems pretty technical, so i'll probably have to print them out and read thru them that way.
when i called penn all they asked me was what i was coming there for. i didn't get a specific set of questions to help them determine who i should see. perhaps because my ent referred me straight to bigelow and i was already being treated for meniere's.
i am curious to see if they agree on the diagnosis. it looks like classic meniere's but i've been reading alot about autoimmune inner ear disorder (or something like that). there's lots of autoimmune stuff in my family, and some in me. the fact that my first onset was at childbirth and then went into remission until now (menopause) makes me suspicious of hormones and autoimmune stuff. my doc won't try the steroids on me, he doesn't want to try anything else until bigelow evaluates me.
well there's most of the story about my ent visit today, guess i might as well finish it here.
he is sending me for physical therapy. after reading some of the "sticky" i'm guess it is VRT? i'm hoping it will help. after reading some of the "chronic dizziness" article i wonder if i'm a candidate, because i also have scoliosis (curvature of the spine) and most of my spine is fused. my center of balance has been wacked out for 34 years now, and i've also had a limp all that time because of the fusions. i'm hoping this doesn't ruin my chances with VRT.
anyway i've bent your ear (no pun intended) long enough. thanks again for all your help. it's been so valuable.

Subs30 04-05-2005 07:25 PM

Re: new to board - fighting a meniere's battle
 
[QUOTE=trentina]Hi Subs30,
Wow, you are full of great info. i did find the sticky after my last post. started looking at some of the sites. it's hard for me to read much online these days in my current condition. also it seems pretty technical, so i'll probably have to print them out and read thru them that way.
when i called penn all they asked me was what i was coming there for. i didn't get a specific set of questions to help them determine who i should see. perhaps because my ent referred me straight to bigelow and i was already being treated for meniere's.
i am curious to see if they agree on the diagnosis. it looks like classic meniere's but i've been reading alot about autoimmune inner ear disorder (or something like that). there's lots of autoimmune stuff in my family, and some in me. the fact that my first onset was at childbirth and then went into remission until now (menopause) makes me suspicious of hormones and autoimmune stuff. my doc won't try the steroids on me, he doesn't want to try anything else until bigelow evaluates me.
well there's most of the story about my ent visit today, guess i might as well finish it here.
he is sending me for physical therapy. after reading some of the "sticky" i'm guess it is VRT? i'm hoping it will help. after reading some of the "chronic dizziness" article i wonder if i'm a candidate, because i also have scoliosis (curvature of the spine) and most of my spine is fused. my center of balance has been wacked out for 34 years now, and i've also had a limp all that time because of the fusions. i'm hoping this doesn't ruin my chances with VRT.
anyway i've bent your ear (no pun intended) long enough. thanks again for all your help. it's been so valuable.[/QUOTE]

Hi Trentina

It will not matter how you got there and who is the first(Bigelow) Doc to see you---they normally work as a team---so---If required---you will see---the other Medical Specialists---that make up the "Team" posted on the Univ of Penn Balance Center web site.....

I understood you to say---that they are going to some testing first---prior to your Doc's appointment----that is excellent---since the results of those "state of the arts" testing will provide the clues that the team will need to reach their Dx & treatment plan.....

If part of their approach is VRT's then---it will be tailored to your particular medical condition/physical capability---you will not be---the first they will have seen---with special requirements......They(Their Team) have seen a lot of people/patients over the years...and their track record is renowned--in the medical community---you will be at the right location---to have it all sorted out, i.e., ..."makes me suspicious of hormones and autoimmune stuff."....

If you go back to the "appointment" page---you can ********(PDF File) their questionnaire---that would/should come in the mail---it is quite extenive....

:cool:


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