failed my vemp test on (good side)

[ernie h]

has anyone been through this.had an removal aug 07.lost hearing in that ear (r side) surgicalyy removed.brigham and womens hosp in boston mass.14 hr procedure.had vestibular therapy after about 6 weeks.got to a plateau where they couldn't seem to figure out why i couldn't improve any further.kept trying to tough it out.struggling with the foggy head dis-equalibrium.finally got back to the ear surgeon.had ear surgeon and brain surgeon.because the tumor went into my ear canal.told the doctor my head feels like it doesn't know where the rest of my body is,get my legs and feet caught on things i know are there but happens anyway.knock things over while walking.cognitive function is bad.brain just doesn't seem to work.any way after testing they say i have nosignal in my neck from my good ear.from what i can understand the saccule portion of inner ear.he said only thing that will help is more vigirous vest therapy.been doing it on my own until i can get beck to pt.balance with eyes closed seems very bad i believe my eyes are trying to compensate too much.been working on esp eyes closed balance with something nearby to brace my fall.i try to keep as active as possible.but it's really tough.have trouble doing most things i always took for granted.i have to push myself.and it seems i can only last for so long then i have to give in and lie down.then i feel guilty for not trying hard enough.i'm very depressed.just would like input fromsomeone who may be familiar with these issues thanks so much sorry for the long explanation. ernie. p/s also had caloric test and rotational chair done.he didn't have the results of those wheni saw him and said the outcome of those wouldn't change anythinh anyway??.he was supposed to call be about them anyway.??

[ppearl214]

ernie,

I also have Peter Black and Elizabeth Claus at B/W. (I also have met Dr. Gopen).  Dr. Claus has been following me and referred me to Dr. Autumn Klein (neuro) at B/W as well as Faulkner (she's following me for headache related issues).  I know many here have tried vestibular therapy and for some, it does work.  Have you met with a neurologist (like Dr. Klein or such) for neuro follow up?  Have the docs also prescribed meds to help try to stabilize things?


I wish I had immediate answers for you.... but I send wellness wishes to you. I can see you are having a tremendous amount of difficulty and I hope things get better soon. I am cheering you on.

Please hang in there!
Phyl

[ernie h]

thanks for the reply ppearl.they haven't suggested i see a neuro.but it seems like you can't always wait for them to steer you in the right direction.been to a couple of phsyciatrists who have tried me on several antidepressents.with no help in fact i think i felt worse.weaned off all of those at this point.because of the nasty side effects.but i do feel i need help.been tangled in an insurance change nightmare because i can't afford the good plan i used to have and one plan i had would cover some hospitals.but not meei where i had to have some balance testing.done changed ins 3 times  to accomodate different hospitals.(all mass based ins companys).with a month waiting period in between each.had to postpone bal tests twice since jan just got them completed.thanks for your input and i'll check him out wish you the best  ernie,

[Jim Scott]

Ernie:

I'm very sorry to learn of your ongoing issues and wish I had a solution to offer.  All I can suggest is that you remain proactive, seeking answers and a resolution for your post-op problems.  The vestibular exercises can help but are not a panacea.  If doing what you used to do is tiring you, it's perfectly logical for you to rest.  No need to feel guilty.  You do what you can - but we all have physical limits.  I had an excellent recovery but I still can't do everything I used to do at the same level.  You just have to try to adapt as best you can, as you've been trying to do.  Don't give in or give up.   

I think a consult with a neurologist might be an excellent idea but I know insurance company policies can be a real hassle.  I hope this can be settled quickly.  Stay strong, Ernie. 

Jim

[ppearl214]

thanks for the reply ppearl.they haven't suggested i see a neuro.but it seems like you can't always wait for them to steer you in the right direction.been to a couple of phsyciatrists who have tried me on several antidepressents.with no help in fact i think i felt worse.weaned off all of those at this point.because of the nasty side effects.but i do feel i need help.been tangled in an insurance change nightmare because i can't afford the good plan i used to have and one plan i had would cover some hospitals.but not meei where i had to have some balance testing.done changed ins 3 times  to accomodate different hospitals.(all mass based ins companys).with a month waiting period in between each.had to postpone bal tests twice since jan just got them completed.thanks for your input and i'll check him out wish you the best  ernie,

ernie, just a suggestion... as I know you have noted insurance issues... phone Black's office... ask for Maria or my buddies Matthew or Kwon (tell them Phyllis told you to phone them). See if Black or Day or Claus will do a patient referral for you to a neurologist (ie: Klein or someone else... Claus referred me to Klein). My thought is.... if a neuro follows you (since Black is the surgeon and his part is done... and Gopen is hearing and now he would only deal with that)... that a neurologist should be following you due to the issues that are occuring post-surgery.... but, I may be wrong on this.  I'm definately not a doctor and am only going on what my team has shared with me (now post radiation, the neuro oncologist is following me post-radiation for any issues I am/may run into... .he's been the key to my aftercare).

Again, just a suggestion and only worth 2 cents... but, it may be worth a shot in order to get you in the hands of someone that can recommend and follow your continous progresses.

Hang in there...
Phyl

[klangel]

hi ernie, wow you sound like me!i had my surgery on left side in 05 but never got any valuable concern for aftercare until 2006 ( no insurance) anyhoo once i got some ins. i took it upon myself to seek balance therapybecause i was sooo useless. i went for about 4 months and it proved to be very helpful but not all the way. im still no fun i sometimes just fall right over. like you put it it is like my brain doesnt always know where my body is. went to many a doctor all kinds neurosurgeons, neurologists and yes even psychiatrists. theres nothing they can do. as its been put to me i have cranial nerve damage that  will evidently not ever fix itself and docs cant fix it either. i am destined to be a wibbly wonky headed woman for the rest of my life. i also struggle like you do with the extreme limitations on what i can and cant do. seems to me also that my eyes (even tho left one is damaged) and good ear are working overtime to compensate for the deficit. therefore i become very fatigued and emotional easily. not a real good way to exist but ive now decided to take one bad symptom at a time and try to improve it. baby steps (like in what about bob) (funny movie) its still very hard for me to accept tho as i was a real independent  and extremely active person pre surgery. but as all the docs say " at least youre alive" and even tho its not what i want to hear i  must try to always keep in mind the alternative which is not attractive at all. so i will continue to seek relief in any way ican so i can try to love life again. btw i learned how to "fall". i know that sounds wierd but if you can anticipate the fall when youre all wibbly you can sorta control the way you go down so that you dont get as hurt as you could. im sorry you are facing these crummy issues but know you are not alone.     kerri     p.s. just always make sure you take your cane with you. it really helps.