Meniere’s Disease Update

menieres-drunk-cartoon

cartoon source here

Over on Hearing Health and Technology Matters’ Dizziness Depot, Alan Desmond has been discussing Meniere’s Disease.  He published a 10 part series in 2012 on this subject but decided it was time for an update.  No it’s not going to take 10 parts.  Maybe half as many.  🙂

The first part discusses the use of Betahistine as a treatment.  Meniere’s Update #1  Betahistine.  Betahistine is frequently used in the UK but is not approved by the FDA for use in the US. There has been one important study that has shown that while harmless Betahistine it probably does little to treat Meniere’s.

The second part of the series focuses on Diet and Diuretics. There is a lot of good information in this section.  In the summary Desmond states “it appears the general sentiment is that it (a low sodium diet and diuretics) might help and it will do no harm.”

Part 3 discusses the use of the Meniette Device.  I had a guest write about her experience with the Meniette device, you can read about it here.  Desmond summarizes his write up saying, “the evidence keeps building that the Meniett device is a plausible idea, with little evidence of clinical effectiveness.”

Part 4 focuses on Endolymphatic Sac Surgery.  I had Endolymphatic Sac Decompression surgery, you can read about my experience here.  I was unfamiliar with some of what Desmond discusses in this section.  I found it very interesting.  I wish I had read it before I had my surgery.  As he said in the last paragraph,  “All of the procedures discussed have similar impact on control of vertigo symptoms, and that effect is not terribly different than the natural course of Meniere’s disease in patients that do not undergo any of the mentioned procedures.”

Part 4.5 Middle Ear Muscles and Meniere’s.  This part talks about something I’ve never heard of before.  It was mentioned in part 4, and it is expanded on here.  There is a procedure where you sever certain muscles in the middle ear to control Meniere’s symptoms.  You must read this part of the update to get a clear view of this procedure.  It’s very interesting.

Part 5, discusses the Natural Course of Meniere’s Disease.  So does it help to do destructive surgeries or would it be the same as the natural course of the disease?  If you look at percentages it’s about the same.  However, if you are having vertigo on a regular basis you are pretty desperate to do anything to stop it, so when a doctor tells you that a surgery may help, well you jump on it.  I know I did.  But I also know, in my case, that it didn’t really help in the long run.  If you have Meniere’s in one ear, the chances are your symptoms will greatly reduce in 2 years and will mostly go away in 8 years.  There is a small percentage where this is not the case, these people will continue to be symptomatic.  This does not include patients who are bilateral.

Meniere’s Update Finale – In the finale Desmond discusses the proposed causes of Meniere’s, and goes into detail on the migraine variant.

I also read a new study comparing steroid injections to gentamicin injections in controlling attacks of severe dizziness, and preserving hearing loss.  It found that steroid injections are equal in controlling vertigo without causing the hearing loss that gentamicin does.   I found this study interesting.  The study doesn’t mention that you may lose your balance function with gentamicin injections, it only mentions hearing loss as the destructive measure. Regardless, if intratympanic steroid injection are equal in controlling vertigo, then one would not need to resort to gentamicin injections.  This is good news for me, as the next step we planned to take is steroid injections, if it didn’t work we were going to talk about gentamicin (again, if you’ve been reading this blog, you know we’ve discussed it before).  This study changes that thought process.  I do not see the need to even discuss gentamicin if it will not control vertigo any better than steroid injections.

I think I’m caught up on all things Meniere’s for today.  I do think now might be a good time to give an update on me.  Recently I’ve been having a lot more vertigo and over all dizziness.  As the Summer went away so did my reprieve.  I may be talking to my doctor about steroid injections soon, but right now I’m handling things okay.  As I carry on, I’ll talk more about it.

How is everyone out there doing lately?  Check in with me.  🙂

 

Surgery went “Perfect”

Sorry I haven’t posted, and unfortunately this post won’t have photos, I promise they will be coming soon.

My surgeon told Stuart that my surgery went “perfect”.  Yay!

Of course, I’m a weird patient….I had a reaction to the antibiotic.  Not a severe reaction, but I looked like a clown.  I had very red cheeks.  Nothing serious, and it faded the next day, I didn’t even have to change my antibiotic, but we had to keep a watch out for a little while.

I also had a reaction to the adhesive they used to attach the heart monitor to me.  I looked like I had huge hickies from an octopus hugging me.  But again, nothing serious.

The pain isn’t bad.  But it is there.  Yesterday was worse, probably because I hate taking pain medication and was tired for feeling drunk.   I am swollen, but I think it’s better than it was yesterday.  I’m very tired, and I’m having some killer migraines.  That’s why I haven’t posted before now.  The migraines made it way too uncomfortable for me to look at the computer.

So….everything is fine!  I’m doing well!

My Cochlear Implant will be activated on the 31st.

I’ll get photos up as soon as I get them off of my phone!  They look much like the photos from the endolymphatic sac surgery…same smiley cup and everything.  Wait until you see how much hair is gone!  (really, not much at all, you can barely tell!)

off to sleep some more.

Thank you all for so many get well wishes.

One Week until Surgery

As excited as I am about getting the Cochlear Implant (CI) next week, I’m nervous too.  I realized this yesterday.  I had appointments scheduled for this week and a dinner with friends scheduled for Sunday, and I told Stuart I just couldn’t do it.  I simply feel like there is too much stress on me right now.  With all the stress, I was making myself sick.

So what am I nervous about?  You would think I’d be nervous about the surgery, but I’m not.  I am nervous about the nurses finding a vein for the IV before the surgery, that is always an ordeal with me.   However, mostly I’m worried that the surgery will be postponed.  There have been so many delays, I’m having a hard time believing it’s going to happen.  I am expecting something to happen…I’ll get sick, my doctor will get sick or have to postpone for some reason….anything.

Now that I realize what has been bothering me so much, I’m dealing with it much better.  I know the surgery will happen.  If some unforeseen circumstance causes the surgery to be delayed , I’ll deal with it.  I know it will happen, if not next week as scheduled then as soon as possible afterward.  I still don’t want to be stressed out more by going to the dentist, having a mammogram, and having a dinner party.  These things will just have to wait.

Now, let’s talk a little about the surgery.  I’m pretty lucky really, about 90% of the surgery has already been done to me.   Since I had the Endolymphatic Sac Surgery, they don’t have to drill a hole in my head.  It’s already there.  All that has to be done is thread the wire from the CI into the cochlea, and place the implant.

There were 3 companies for me to choose my CI from, each had positives and negatives but really they were all pretty close.  I chose Advanced Bionics.  This is a very personal decision for each person who gets a Cochlear Implant, I felt that the Advanced Bionics CI would fit best in my life style.

This is what will be going in my head:

Cochlear Implant from Advanced Bionics. http://www.advancedbionics.com/us/en/products.html

I’m so happy that Duke is a two processor facility.  The processor is the part that you see on the outside.  Since Advance Bionics offers more than one processor, I was given the choice of getting 2 the same or one of each.  I chose to get one of each.  One processor is called the Harmony, it is a Behind The Ear type.  I liked this model because the T-mic (microphone) is located at the opening of your ear, so it will be easier to talk on the phone, and my ear will act as a natural buffer for noises, like your ear normally does.

Here’s a photo of the Harmony Processor:

Harmony Processor – photo from Advanced Bionics website.

The Harmony comes in a variety of colors.  I think I was allowed to choose 5, but it’s been so long now, I don’t remember what colors I chose.  We’ll have to wait and see after I get hooked up.  You can use regular hearing aid batteries, or rechargeable batteries, I’m sure you know which ones I’ll be using.  I was able to chose different types of rechargeable batteries, small and large.  The small battery doesn’t last as long as the larger one.  I ordered both.

The other processor I chose was the Neptune.  The Neptune is capable of being Water Proof, it’s the only CI that is Water Proof, so I can swim in it!  The Processor is not behind the ear (BTE) it can be clipped to different things: an arm band, your shirt, a lanyard, your hair…ect.  The microphone is on the part that fits to the head.

Here’s a photo of the Neptune:

Neptune Processor – photo from Advanced Bionics

I realize the photo above doesn’t give you a good idea of what the Neptune really looks like.  So here’s a few that will give you a better idea:

This photo shows the Neptune Processor. The thinner profile is not water proof, you must add a different piece to the processor to make it water proof, that is shown on the thicker profile. (photo from AdvancedBionics website)

 

This shows the Neptune on a child while swimming. The processor is hooked to the arm band. (photo from Advanced Bionics)

This shows the processor clipped in a pocket, and in a girl’s hair. (my hair is long, I could completely cover the CI in my hair if I wanted.)
(photo from Advanced Bionics)

With the Neptune I was also given the opportunity of picking all kinds of colors.  I know I picked a brown, and the lime green seen above, but I don’t remember the rest.  We’ll all be surprised when I get hooked up.

The CI will be turned on 2 weeks after surgery.  That will be the beginning of August, hopefully the 2nd or 3rd.

Anybody want to know anything else?

I know this is a LONG post, but it’s full of information, right?

We can make it, one day at a time. : )

Wonky, Sloshy Head

Image from deviantArt. “loose” by pehdtsckjmba

If you have Meniere’s, I know you know what this title means.  For the past few days, (actually I think it’s only been two, but it feels like a week!), I’ve had the wonky, slosh head feeling.  I dare not move my head too fast or I’ll fall down, really, I did this yesterday!  I haven’t felt like this in a few months, I wonder what has started it now?

Could it be….

  1. Hormonal Changes?  It’s that week, but it hasn’t started yet.
  2. Missing one of my meds for a day and a half?  (that’s 3 doses)  This is what Stuart thinks it is, but I’m wondering if part of that isn’t just him feeling guilty because he forgot to go and pick it up.   (it was Buspar for anxiety and panic attacks – these started in January, I haven’t felt more anxious the past couple of days, just wonky!)
  3. The weather?  We have had some big weather changes almost every day.  We’ll have beautiful clear skies, with a lot of heat…and then we’ll have a lot of rain all of a sudden!  But this has been happening for weeks, so why bother me now?  (it has been increasing my headaches, but I haven’t noticed the disequilibrium before.)
  4. It’s just that time?  We all know Meniere’s is NOT predictable.  So maybe this is just the monster saying hello.

I’m still so grateful that I haven’t felt like this in a while, actually I’m not sure the last time.  Not much since the surgery in December.  I have to say, I’m thrilled with the results of that surgery.  I have only had one mini vertigo attack caused by Meniere’s since my recovery.  Yay!  The Endolymphatic Sac Surgery was a big success for me.

(I’m still waiting on our insurance company to send the right type of letter to Duke, so I can get my Cochlear Implant surgery scheduled.  They have been so evasive about this, how hard is it to say that this is covered under our plan as of this date with an in-network doctor.  As long as our plan doesn’t change everything should be the same.  NO, they send a letter saying they can’t give a predetermination, because the plan may be canceled or changed, the doctor may not be in-network…ect.   They never even say if it’s covered by our plan at the present time!  What a pain!  So I won’t be getting my CI activated before my birthday….I’m so disappointed.)

I promise to write a post about this whole journey, and show which processors I chose, as soon as I feel a bit less wonky.

 

Wendy just write…. #HAWMC Day 12

Prompt for today Stream of Consciousness Day. Start with the sentence “_______”just write, don’t
stop, don’t edit.Post!

(written April 5th)

“Wendy” just write, don’t stop, don’t edit. Post!

Stupid computer can’t figure out what I want to do Can’t get the dang program to close…ugh….can’t make a slideshow…I know I’ve done it before…why do I want to throw it out the window.

Heard from friend was nice, but it’s hard. Can’t do so much. Other friend told me I wasn’t a good friend because I didn’t keep in touch and didn’t make time for her when I was feeling good, she’s the busiest person I know, I looked back in my emails, the not getting together wasn’t all my fault..I apologized. A lot. But the reply I got back seemed so cold, so sterile. I just couldn’t put more of me out there…..not with everything, I just couldn’t. She wanted so much more than I could give. I want more..but when you can’t just chat on the phone, and people don’t like to email or take your written words wrong it’s so, so hard. And to see someone in their prime doing everything you will never be able to do and everything is about that, and all I can think about is my illness, what is left? I miss her…I miss them…but I have nothing….I really feel I have nothing to offer.  What can I offer.  I can’t even hear them to talk to them.  I focus on if I can get out of bed, brush my teeth, walk outside….maybe if I’m lucky a little more….what can I talk about to people who have a full life? a job, children, acitivites, friends, interests?  I’ve been so consumed with just staying alive the past 2 years. Well that’s stretching….Well no it’s not!

This past year I’ve been through so much…and I’ve persevered, and now I’m mad at me!!

I was told I was better, and would be better!!! Damn the doctors! How could they do that to me!

I had 5 months of a new life! A better life! No vertigo. I was moving on. I started to become a Foster Parent, I started to drive, I got a CAR! I was making a life….I didn’t think it would be ripped out from me.!  I was so busy….I didn’t think it would end…

After those 5 months I went through 7 more lumbar punctures SEVEN with 5 or 6 sets of patches down my spine. I spent about 6 months in bed with not only CSF problems but gut troubles too. I’ve gained nearly 60 lbs. I feel old, fat and ugly. I don’t like me any more….yet I do. I do. I’m proud of the way I’ve handled things.

I’ve had 2 in depth surgeries on my ears. Surgeries that took my ears almost completely off and drilled to my brain, and left holes in my skull the size of a 50cent piece.  But they worked…I think.
I’m now told I have high CSF pressure…Intracranial Hypertension. Serious, rare. My hearing in my “good” ear is almost gone.

Now I’m falling apart….and I’m angry at myself about it!!!?????

I’ve been so resilient, so adaptive, so….I can handle it.It may not be what I expected…so I’ll change what I expected…NOW….I’m just plain scared and mad.  I thought I was mad at everyone, I’m taking it out on everyone….But I’m so angry at me. I’m angry I’m not bouncing back, and I’m angry I’m not more tenacious, and I can’t do more and damnit….I’m angry that my body is doing this to me!  I’m angry I can’t lose weight….I’m MAD AS HELL!

I’m angry I’m sick! And I have to deal with it. I have been dealing with it. But right now…I’m not doing the best with that.  However, I know me, and I will. I’ll get it together, and get myself another lease on life.  Life is good.

I have such a good husband. It can’t be all bad. I must think of the good days.

Yes, it’s still my blog here….it has many personalities…or something. Plus update on symptoms, and Spring.

You may read my blog from your email, and haven’t even seen it….but if you have, you may have said…”she’s at it again!”

and yes I am….I just didn’t like it.  Too busy, and I didn’t like the page color.

So many things I can’t change on Word Press.

And I don’t have Photoshop right now, I’ve been trying to use Gimp…but I’m so lost with that program it were a real book I would have torn it to shreds by now.  Ugh!!!

This looks like me, trying to use Gimp.
(image source free clip art.)

I miss Photoshop, I need to buy it, but I need to buy a teacher or student version…I really can’t afford the off the rack price.  whew.  That’s like the difference between designer clothes and thrift store, for the same goods!  I just don’t get it!

So for now I wait.

Did you know on WordPress you have Pay to change the CSS on your blog?  You have to pay to change your font….yes thank you can get around that one by writing in Word then copying over, but not all fonts copy over right.  And I’m lazy.  I’m just shocked at all the things that are now considered “upgrades” that used to be free.  I know this is a commerce driven world, but it makes me sad when you start with something because it offers certain features free, then it changes.  And I’m sorry, I’m not paying $30 a year to be able to customize my blog.  Heck I can’t even do it, I’d have to get my hubby or my friend Vincent to do it.  And I’d only do it about once a year, tops. If I found the perfect look, I’d probably change very few things ever again!

OK….So, I hope you won’t think ill of me during this transition time.  I like the retro look.  I’m going to try to put little ants in the header, and that will probably be it for a while.  If I can get that done.

Symptom Update: My headaches, had decreased, but recently every time I go to sleep when I wake up I have a blinding headache, like a white light pierces my brain, the intensity doesn’t last for long…but the headache doesn’t go less than a category 6.  So I’m a bit icky most of the day.  But it’s better than it was!

Visual problems are better.  The one that has really stuck around is the…oh I don’t know how to describe it…not only can I not see white on black very well, the white looks gray, but black doesn’t look black-black.  It has this variable tone.  Everything looks a little off in tonal values.  Which is very odd for me.  But I can still tell what color is what, I’m not color blind!!  Yay!  I just can’t tell if they have white  or black added to them.

Very tired.  But not sure if it’s the disorder or the meds, both can cause it.

The Meniere’s has been staying away.  I think the surgery in December worked for that.  The hearing in my left ear, is still gone.  Right is more sloshy.  Had that hearing aid adjusted and I keep asking Stuart, “what’s that noise?”  and telling him to stop yelling at me.  Funny huh?  Now, which will come first, the cochlear implant of the shunt?  Each are inevitable, it’s just which one makes its requirement known first.  Of course, the shunt could be much more important for health reasons, but who knows how long the medication may work.  So much to consider, so much out of my hands.  (don’t you hate that?)

That’s all for today.  Hope everyone is enjoying the First Day of Spring.  (I don’t feel like we had a Winter.)  Everything is blooming at once, my allergies have gone mad!!

I should be saving these for next month.  : )

I just haven’t felt like it.

Normally when I’m not feeling great, I turn to my blog.  When I’m happy and want to share, I turn to my blog.  When I’m mad, I turn to my blog.  Well, you get the picture.

Lately, I just haven’t felt like it.

I’ve thought of much to say, but it all sounds like a big jumble to me.  No real coherent thought.  I’ve been happy, sad, mad, confused, in pain, sick as a friggin’ dog (where did that saying come from anyway?  Or Weak as cat pee?  that person evidently never smelled cat pee!)…see what I mean…all over the place.

I do feel I owe an update.  Today is day 12 of feeling like crap.  I’ve decided to name my Slosh Head – Alvida – after a famous female pirate.  My head feels like I’m living on a very rocky boat, I’m sure the first Alvida (often spelled Alvilda) spent many days on a rocky boat, hence the namesake.

Alvida cannot seem to get her “sea” (or in our case, very rocky land) legs.  We wooble..but unlike the Weebles we can fall down.

I had a-n-o-t-h-e-r lumbar puncture (LP) on Monday.  This time it actually appears they caught the high pressure before I had a blow out!  It was the highest it’s ever been..then Dr. Gray said something that confused me (of course that’s pretty easy to do right now), she said, that the pressure doesn’t take into account volume, and my volume should be higher right now because of the excess fluid I still have after the surgery.  So, can we trust this LP at all?  She did a little testing.  She added in 3cc’s of CSF (cerebrospinal fluid pressure), and I started to get a headache.  She started to take some out, and I started to feel better, then she took out more and I felt weird.  She took out 10cc’s all together.  (I think that includes the 3cc’s she added….again, confusion).

"Hope" for Dr. Gray - Thank you for giving so many people hope.

I made Dr. Gray a piece of art.  I’d been working on it for a while, if you’ve been on my blog Create To Heal you have seen it in progress.  I still needed to color quite a bit of it, but I finished it just in time.  She loved it!  Just gushed.  Said she was going to frame it and just went on and on.  I’m glad it made her happy.  She also said, we could come by and see her anytime, I didn’t have to be getting a hole in my back.  LOL.

While in recovery I started to feel MUCH better.  I could turn my head without getting sick, I was happy.  Then I got up to leave.  Ugh…not as good.  After we got home and I ate dinner the world began to move again…Dang-it!  But Dr. Gray said it would take some time for things to level out.  She put me on a small dose of Topamax, to see if we can keep the pressure lower, we will up the dose as needed.  Hopefully, we’ll figure this out and I’ll be able to move around soon with out triggering a full blown vertigo attack.  Not feeling like I’m on a boat would be nice, but not spinning some every single day would be a miracle right now.  12 Days!  TWELVE DAYS!  But I can handle it.  I know I can.  If it ends up that this is the way it will be I’ll figure out a way.  Perhaps I’ll need to wear a neck brace so I won’t move my head to fast?  We’ll figure out a way that I can deal with it some how, some way.  Wow, I just really surprised myself!  I haven’t been feeling the most optimistic lately.

After the coldest night I think we’ve had in a very long time (it was in the 20’s F here), we went to the library the next day.   Guess what we saw out front?

This photo was taken February 12th!

That’s all for now.

Alvida is telling me that she is not going to allow any more!

Here’s to getting my sea  legs…I hope.