New to the board Upcoming Translab on 3/24

[beachmommy]

Hello All,

I'm a 41 year old Mom. I am scheduled for a translab on the left ear in one week. The reason translab was suggested is because I am already SSD, and have been for nearly 12 years. I have had a history of ear issues for my entire life.

Last spring I started noticing an uptick in symptoms. Of course, I have lived with tinnitus every day, for about the last decade. But there was severe pulsion (wonky head), balance issues, by summer, the vertigo was back with a vengeance. The episodes would last for entire days, abate for a few hours and then be back again for another whole day. - Sometimes for ten or twelve days in a row before the bad (bed ridden, bucket in your lap kind of) vertigo would subside.

My other ear is healthy and functioning properly. No typical low range hearing loss that you would find in a person with Meniere's symptoms as long or as severe as I have had them. Also, the extent of the damage to both the hearing and the balance nerve on the left side is quite extensive.

My doctor thinks he can help me and has promised to take very good care of me.

It has been such a relief just to find someone who seems to understand what is happening to me, and someone who can manipulate that nerve and get it to respond. For half a dozen years I have been living my life around this faulty nerve.

Thank you for this board. Wishing great health to all.

[Brendalu]

It sounds like you have all of your bases covered!  I had translab almost five years ago.  The only advice I can give is to be kind to yourself, let others do things for you.  Get plenty of rest.  Brain surgery isn't a cakewalk and you need to really listen to what your body says it can do.  I will keep you in my thoughts and prayers.  I'm sure you will have a successful outcome!
Brenda

[ppearl214]

Hi Beachmom and welcome.  I agree with my Brendalu  and it does certainly sound like you have all bases covered.

I've done a little favor for you about Dr. John F. Kveton.  My brainsurgeon back-up is out of Yale (she is now at Brigham/Woman's in Boston) and is still on staff at Yale....so, I've put a message to her (she's great about responding back to me) to inquire her inside track on Dr. John F. Kveton for you.  Waiting to hear back from her to get her take on him (ie: his experience, studies, has she worked along side with him, etc). Will advise once she does. 

I'm sure you have done your own homework on him as well and again, it certainly sounds like all things are in place for you and your upcoming surgery.  Know that I/we are cheering you on... and will advise once I hear back.  I'm sure he's terrific... and that you are in good hands.

Phyl

[Kaybo]

Hi Beachmommy and WELCOME form Texas!!  I, obviously, am a good distance away from you and have no insight into Dr. Kveton, but I just wanted to welcome you here.  I am 40 and have 3 daughters so sounds like we have a bit in common.  I had a translab 14 years ago.  Please feel free to PM me if you would like to chat on the phone!

K  

[moe]

Hi Beachmommy,
I had translab almost 4 years ago, suffered from tinnitus for about 20 years and a couple of years before the diagnoses, started feeling worse with symptoms of just disequilibrium, and mild dizziness, but NOT vertigo and worsening tinnitus.
My doctor flippantly  diagnosed Meniere's  (sp)and put me on some medicine, which I stopped taking after a few weeks, because it wasn't helping and I truly didn't think I had Meniere's. Then the hearing loss in the left ear prompted and MRI. My symptoms were so slow and insidious. I basically ignored the symptoms, while going about my business on the kids, house, work, etc.....(bad mommy)

Anyway,, had little dizziness post op because the other side had already compensated. You sound very prepared. How big is your tumor?

The first three days "don't count" as we say because you will  most likely feel CRUMMY but then you are over the big bump and just go along on a gentle ride to get over the smaller bumps. Expect to recover at least 4-6 weeks to give your body the rest it needs. Lots of rest, naps, gentle walks, fluids, you get the picture

It'll be here before you know it, and you'll be "on the other side" which will be a GREAT relief
Maureen

[sgerrard]

Hi Beachmommy,

FYI, I deleted your other post in Pre-Treatment. We find it works better if you get all your replies in one place; less confusion that way.

Welcome to the forum!

Steve

[Denise S]

O.K. I read this earlier and didn't see anything about actually being diagnosed with an Acoustic Neuroma.....read many times, figured I was missing something.    THEN, the posting above says "It is not suspected that I have a tumor",   I am reading the word NOT. ?

So, my question is:  why exactly are you having this surgery?   Is it to remove the other device or ??what??  Am I missing something here?

Welcome to the board and as for finding Translab people....for sure found a good place.   The search engine above is an EXCELLENT tool to use!    (although, I'm pretty sure everyone here has had translab due to somekind of tumor removal, so your situation sounds for sure different)  hmmmm

Best Wishes,
Denise

[lori67]

Hi Beachmommy - I'm a beach mommy too, just a different beach.  

There are quite a few of us who have had translab and are doing well now.  I hope that yours will take care of your symptoms.  Sounds like you've been dealing with them for long enough!

My mom and sister also have metal in their ears - they both had otosclerosis and had donor bones implanted using platinum.  They have both been able to get MRI's.  I guess it all depends on what kind of metal they use.  Does your doctor plan to do a CT scan prior to surgery?  It's certainly not as good as the MRI for some things, but at least it would give him some idea of what's going on in there before he gets in there.  

Welcome to the forum!
Lori

[ppearl214]

So, my question is:  why exactly are you having this surgery?   Is it to remove the other device or ??what??  Am I missing something here?

Hi beachmom,

Can you please enlighten based on what Denise points out here?

BTW, I did get an email back from my back-up NS at Brigham/Woman's about Dr. Kveton.... her quoted comments here:

"i know he is an accomplished surgeon and has worked with the neurosurgeons at yale for years-he was there when i was a resident"

She was doing her PhD/MD late 80's/early 90's for time reference.

Phyl

[ppearl214]

Hi beachmom,

well, he certainly sounds very reputable, based on the link you shared. Thanks for sharing this as it will be helpful if future users of the forums inquire about him.

Ok, I have to admit... curiousity is killing the cat (ok, moi)....... has he noted exactly what he plans on doing, by doing the translab approach if not removing an AN?  I guess what I'm trying to ask is this... by entering via Translab, he is noting to "end the vertigo". Now, I am not familiar (others, pls chime in on this one please) of surgery to "end vertigo" other than the vestibular nerve to be removed, then, having vestibular therapy (once the nerve is removed) to help compensate for the absence of the nerve. So, I guess my question is this... is he planning on removing the nerve or doing a technique that we may not be familiar to help offset the vertigo, etc?

Again, just trying to follow along for exactly what he plans on doing (yes, some of the details).

Regarless of what he does.... we are here, cheering you on next week... sending good vibes to help the cause.....

Phyl

[ppearl214]

ok... got it! Thank you for sharing this... so, ultimately, he is removing the nerve (as suspected, with any translab surgery) and remove the prosthesis as well (double procedure).  that is where I was getting lost on how he was planning on "ending the vertigo".   

Now, I'm enlightened! 

thanks again,
Phyl

[Jim Scott]

Hi, beachmommy ~

I think your upcoming surgery and the reasons for it have been so well explained so that even I can understand it - and the information is welcomed. 

I can't think of another question and I have nothing substantive to add but I wanted to (a) welcome you to the ANA website discussion forums and, (b) wish you a very successful surgery and a speedy, complete recovery. 

Jim

[lori67]

I have to say, I've heard of people breaking some strange things, but you are the first person I've ever heard of that broke an ear bone!  Now I can say "hey, I know someone who...."   

Your poor ear has been through the wringer!  I really hope you get some relief finally!

Please keep us posted on how things go.  Just when you think you've heard of all the maladies that can affect a person's balance/hearing, someone comes along with something totally new!  It's good to keep us all on our toes!

Good luck!
Lori

[moe]

Beachmommy,
Yea, I get it too! There are so many variations of surgeries, for different symptoms. Dr. K sounds VERY qualified and I anticipate you will have this surgery and in the long run feel soooo much better
Maureen