All treatments have been done
on my left ear. I am now Bilateral, my right ear has Menieres now too.
So far, I only have the fluctuating hearing loss in that ear and no treatments
have been done. (The right mm was discovered Jan.99)
Treatments I have Received
For all who have asked me
and are concerned, I am scheduled for VNS surgery Dec. 16th 1998. This
is the final treatment I can receive. This is a surgical procedure where
the Dr goes in and cuts out a piece of my balance nerve, thus stopping
any signals from my inner ear balance system to my brain. I will
be adding a page about my experience after I have it done and I begin the
road to recovery. I am scared, but getting excited about this because the
success rate is extremely high! Thank you everyone who has wished
me well!! (Nov. 5, 98)
I will attempt to describe the treatments I have had done to this date. For better details, please refer to the web sites I suggest. :-) I have only lived through these procedures. Thanks
DMZ Dexamethasone injections
*Jan. 6, 7, 8 1997*
For a better description please refer to the Meniere's Org. information page.
Basically, my Dr. made a small incision in my ear drum and injected the DMZ into my middle ear. I had to lay very still on my right side for 30 minutes. After 15 minutes, he came back and injected more. This was repeated 3 days in a row. The success rate for the DMZ is high, however, it did not effect me at all.
ENDOLYMPHATIC SAC DECOMPRESSION SURGERY
*May 21, 97*
A more detailed description can be found at the Ear Surgery Information Center
I went into surgery on May 21, the surgery lasted about 2 hours. When I woke up I was VERY nauseous, so I had to stay over night. (Most people can go home the same day, but I reacted to the anesthesia with nausea) From what I understand, the Dr. removed part of my mastoid bone (behind my left ear) to give the endolymphatic sac room to expand, thus relieving the pressure. He also drained the sac too. He did not put a shunt in my inner ear, because he said they close with scare tissue to often. I woke up with 17 staples from above my ear to the bottom of my ear. (And of course a little hair shaved too :) I went home the next day. I was still nauseous, but just wanted my own bed and bathroom to "loose my cookies" in. I felt light headed and my head hurt, but nothing very major. On day 3 after the surgery, I woke up with no balance! I sat up in bed and fell over to the left! This lasted only the one day. I was sore and tired, but that was about all. After a week the Dr. removed the staples and that was a relief! After that I recovered fairly fast. Within a month I was back to my old self. I had not vertigo attacks and was feeling better than I had in a few years! The down side was, I woke up from surgery with about 80% hearing loss. The chances of this happening with this kind of surgery are only 5%, however, I am in that small percent. I went symptom free from May 1997 until the middle of October 1997.
PREDISONE
*Oct. 97 - Jan. 98*
The vertigo came back worse than ever in October of 1997. Not only was I spinning, but I would loose my blance and the longest it stayed gone was 5 days! The Dr. put me on Predisone for 3 months to try to stop the Meniere's from flaring up again. All it did for me was make my VERY emotional and gain some weight.
GENTIMICIN INJECTIONS
** Oct - Dec 2000:
Since my balance nerve is re-growing after my VNS, I am getting 3 injections
to see if they kill off what is growing back instead of getting a second
VNS. I know the first injection on Oct, 30th did not work, because
I had a couple spins in Nov. I am hoping the one I had Nov. 30th
did the trick, so far no spins. I get my 3rd Dec. 28th.
*April 16 - 30, 1998 *Vestibular Rehabilitation May 11 - June 4 1998*
A much better description of this procedure and what it does can be found here
The last and God willing, final treatment I have received has been the Gentimicin injections. Gent. is a Aminoglycoside Antibiotic which are ototoxic. Ototoxic means that the drug is toxic to the hearing and balance system. When injected directly into the effected ear, it produces a chemical labyrinthectomy. In short, the chemical targets the balance system and destroys it, thus stopping any signals from the vestibular system to the brain. I received 3 injections (so far) started on April 16, 1998. Dr. Barrs inserted a small tube into my ear drum (the kind kids have to drain the ear) and injected the gent. Then I had to lay still for 30 minutes. After 15 minutes he came back and injected more until it was FULL in my middle ear.
The following inserts are emails I sent to the Meniere's coping list:
These best describe what I went through
April 17: feel light headed and my feet keep getting tangled, but I am just sitting on the couch reading email and watching TV. BUT, I am upright!!! My ear itches like crazy today! I just woke up from a long nap and feel like I have the flu :-( that achy I feel horrible feeling! My ear and the back of my throat itch so bad I feel like climbing the walls!! My Dr said I can take Benadril for the itching, but to watch out for any rash. He said its the Gent that is making me itchy, a side effect that some people get. Oh well.
April 19 Day4: I woke up this morning feeling real crappy! I am congested like I have a cold, sneezing, coughing, runny nose. My head and body ache again. *sigh* Yesterday I felt pretty good and went to the video store with my boyfriend and daughter. Big mistake! I feel ok at home, but, when I got in the store, my head started pounding with pressure and my perception was way off. I just hung on to my boyfriend and we got me home as soon as we could.
April 20 Well, it is day 5: As I have posted before, most of my problems have just been being tired and feeling a bit achy all over. Well, today the vertigo hit! Ahhh! I woke up feeling very tired still, and after my kids went off to school, I laid down on the couch to sleep. When I woke up I was a mess! I have pressure in my head, and my ear (the one with the tube) is making strange clicking sounds whenever I move my jaw. I am not spinning or anything, but, (this is hard to explain) I have to keep my eyes still and move my head instead of my eyes, because when I try to move both at the same time, the world doesn't stop when my head does! When I am sitting and lay down the world rocks like I am on a boat. So, I have been relying on feel with my hands and feet to walk today. I feel ok sitting here typing, because I am holding my head very still. Also, last night, reading my email, I saw lines flickering along my screen (which has NEVER happened before!) My son didn't see them at all. Interesting. My eyes have been going blurry on me off and on today too. In a way, this reaction is a HUGE relief! I know that sounds funny, but, I have been so worried that the gent. wasn't doing anything at all, now I know :-) So, now I know it has been doing its job in there, right? It is just strange that it took 4 days after the injection to hit me like this.
April 22: Day 6 of Gent. Oh my gaaaaawd! I have NEVER been slammed with a drop-attack that STRONG before in my whole MM life!!!! I had no warning, nothing! I guess my right side hasn't compensated at all yet! I have to be at the Dr's in an hour and I can't move! NO balance left after that one!
April 23: I just returned from getting my second gent injection. Because my hearing has dropped, my Dr did a quick hearing test first. I guess my hearing has improved since last Thursday, but, I have lost more but not as much as I thought. My speech discrimination is still good, so I will just need to get my hearing aid adjusted again. My balance is a mess right now! Had a restless nights sleep due to the bed moving too much whenever I moved! :-) When I woke up I realized I had been sleeping all the way up against the wall (for security I guess). If I lean a little forward I don't feel dizzy (just off balance pretty bad) But when I lift my head straight or tilt it back even the slightest WHOA! The world starts to swirl around! But, it leaves as soon as I look down. I will be MAKING myself lift my head more and tilt it back so that my right side can learn faster.
April 27, 98: Does your post mean that this DOES go away??? Awww! I feel so dizzy! It has turned into constant now as proposed to when I move! I can't hold anything but 7up down. And the eyes keep trying to cross!! Started this morning, but, the other dizzies started last Monday, so it makes sense that I would get worse on the following Monday. :-) I still get at least one more on Thursday, I think, my Dr said something about if I was too dizzy he might postpone it? I don't know, I was pretty out of it at the time ;-)
April 28: This morning is not good :-( It started last night. My eyes are doing strange things! All by themselves! They are wandering and crossing and I can't look anywhere but straight ahead. They are kind of wobbly! The Dizziness is more of a heavy, pull me over kind! It has been kind of light and hasn't pulled me over so far, but not since last night! So, I guess this means the second shot has REALLY kicked in! So, today is going to be one of the hardest days to stay upright! not to mention awake! But, I keep telling myself, the gent IS working and my weed (balance system) is dyeing! Its discouraging tho, because every time I start to feel better, I get worse :-( But....I MUST get worse before I get better!
April 29: Not doing so good. :-( The balance on my left side is gone, I think completely. When I move I tip heavy to my left, so I have to be real careful. My eyes, hands, and head are having a real hard time working in a coordinated manner. My eyes hurt from holding them still. I am able to sit up more today and move around more because my tummy is more settled. Yesterday, I KNEW I needed to sit up and move around but whenever I did I lost my cookies :-) I was thinking about walking up and down my hall, that way I have a wall on either side to run into. But I NEED to start walking! Gotta get my right side trained. I see my Dr in the morning. I am scheduled for a 3rd injection, but he said on the phone that if I am still this bad he might not. I don't know if I want to postpone the last one! Just to feel better to get worse again? I think I would rather have the last one and get this over with! This is all a normal reaction to the gent. As Barb said, I think the nerve is dead or almost! I will be getting better by the day now. Had to get worse to get better.
April 30: Well, I got my last injection today. The Dr. is almost positive I will need no more! He was very pleased with how messed up my balance is, because he said the gent. has been successful! He was going to postpone my last injection until my balance stables out more, but I told him I wanted it done NOW and get it over with! He understood that and did the last one. I get the water-in-the-ear test done next week to see if it worked. When he injected the gent. I didn't spin at all like I did before, which was another good sign. My hearing has actually improved a little since the first injection (I still have more hearing loss than before the gent. but, not as much). I am still in a slow spin, which will stop sooner or later. He wants me to fix my eyes in one spot and rotate my head off and on during the day. Then when I can do that, work on moving the eyes and head until I can do it without falling over. And I need to walk. He said to be as active as possible, that way my right side will learn faster. Only problem with moving, is when I do I "loose my cookies!" He didn't want me using the phenergan except at night, because it slows down the vestibular system in my good ear, which will make healing slower. So, I will just do the best I can! Thank God the last one is done and now maybe I am back on the road to recovery. He told me that how dizzy a person gets after the gent. and VNS has a lot to do with how well their vestibular system was working. Well, mine was in FINE working order! Bluk! I think the hardest part of all this has been MAKING myself move around. I feel just fine while I am laying down!
May 4, 1998: Ok, so it is day 19. I can hold my eyes still now, except I still can't read a book (I don't know why I can read the computer screen, but not a book?? weird) when I first wake up in the morning I have to focus my eyes on something and get them to stop wobbling before I can get up. I am a bit worried that this is a permanent thing. I figure, my eyes relax while I am sleeping and they just do their own thing, and when I open them I need to get them to stop moving back and forth. I am walking better, and I can move around without going into a big spin, now they are just little ones. Haven't fallen off the toilet in days! hahaha! I can sit up on the couch for a lot longer periods of time now. However, I can only get up and move around for about 10 minutes before I get exhausted and my eyes start to wobble and the balance goes! So, after doing not much of anything, I have to lay down and "recharge" for about 20 minutes or so. It is soooo frustrating!!! I went to the grocery store today and after the 2nd isle I had to sit down and rest for a few minutes! I was leaning on the shopping cart and the dumb thing needed and alignment! Next time I think I will have Travis push me in one of those wheel chairs with the basket on them.
May 05: I HAD A DROP ATTACK! YES! YES! YES! Ok, now that I have your attention, let me explain why I am excited about that. :-) For starters, let me tell you I am in the middle of one right now. I know I am because of the pressure and such in my head and ear. BUT NO SPINNING!!!!! I woke up this morning and felt one coming on, panicked and was about to RAGE when I realized that I was NOT spinning! So I sat still and concentrated on what it felt like and I felt the pressure and all that but not the out of control spinning! I guess the sac filled up, busted and what usually sends me spinning didn't because the nerve didn't send out any crazy signals! Good sign??? We will see when I get the water-in-the-ear test done tomorrow afternoon. THAT will be the true test!
May 7: I saw the Dr yesterday and did the water in the ear test. Remember I was telling you all that my eyes were still wobbling all over the place? Well, they still are. The tech. doing the test had to ask a couple others what was going on with my eyes. One thought I was blinking with my eyes shut, so she put her fingertips on my eye lids and discovered that it was involuntary movement. Well, when I saw the Dr. he did his own test with ICE COLD water in my ear! He watched my eyes and did it over and over. I told him how I went into a spin attack the night before. well, he said that the tests are not telling him anything because he cannot measure my eye movements because they wont stop moving! He was so frustrated! At one point he even said that we should have just did the VNS! I told him that my eyes have been doing this since the second shot, and he asked me when I start school again. He is as concerned as I am about being able to read my text books! He said that we will probably need to do some more injections, but he wants to wait and let my eyes get under control again. He is even thinking about doing the VNS instead of continuing the injections. The reason why he wants to do more is because I DID go into a spin attack and he said I shouldn't have at all! So, that tells him that we need to do more. So, for now, I have to do vestibular therapy 2-3 times a week for 4 weeks to get my eyes under control, then we will see from there. He wants me to keep a journal of my MM symptoms and how many attacks I have and the severity of each. So, as of now, we are going to concentrate on getting my eyes under control, and monitoring the amount of dizzies I have. My Dr. is so frustrated! I have never fit the "mold" where treatments are concerned, and I didn't this time either! So, I guess it is vestibular therapy for a month and then back to the Doc to see what is next. Out of all my symptoms, the eye wobbling has been the worst! I am walking better, and have more balance, but because my eyes bounce and wobble and jerk back and forth, I have a hard time walking around and doing things!
I have been doing Vestibular Rehab now for 3weeks. I am a lot better now, my eyes are under control and so is my movements. With everyday I have improved more and more. I still have 1week left and then I see my Dr. again. I am learning to walk and keep my balance with only my right side, my eyes, my feet and legs. I can now catch my balance with my ankles and legs instead of my whole body :-) My biggest thing right now is learning to trust my body. I see my Dr. June 8th and we will decide then if I need anymore injections and if the balance system is totally dead.
I hope this helped anyone going through the gent. procedure or who is thinking about it!
Yea, it has been very hard, but I am getting better each day, so I feel it was worth it. :-)
As of May 25 I have been walking places alone and feel almost "normal"!!
On June 22, 98 I had a 4th injection. The vertigo attacks started up again and started hitting me daily again. I get a 5th injection on July 6th if I need it. Due to me being back in school, I am having them done on Monday's so that if I have any symptoms they will hit me on Friday, which will give me 4-5 days to get better before my next class. So far I am not feeling any different, but it has only been 2 days since the injection. My hearing is worse, but, it is from a small hole my Dr. poked in my eardrum. My ear will pop, then I can hear normal (normal for me) then it will pop again and I will not be able to hear again. My ear is also draining the gent. This happened after the 3rd injection too.
June 25 Well,
the 4th gent. injection is setting in. I have had 3 spinning attacks
today. And now I can't move without the world spinning
around. I just went
back to my web page and read about my reaction before
and it is the same as
before. My fear is that I will get as bad as I was before!
I worked so HARD
to get to where I am today! Also I have 2 exams
next week and need to be
able to study. :-( :-( :-(
It is
10:30pm now and everything has settled down. So, I am hopeful that
it wont be so bad this time around.
June 26 Today I am nauseated a lot. Not as bad as before though. Out of the blue it will feel like the floor is dropping away on me (like being on an elevator going up). Also, I have had one strong vertigo (spinning) attack today. But other than that I feel ok.
July 1 I have been having almost constant nausea and the spinning attacks (vertigo) is happening almost daily again. I am scheduled to see my Dr. again on Monday July 6, and we will decide if I am going to get another injection.
July 6 I had injection #5 today. My Dr decided that the gent. has done all it can do with me. It has done some damage, i.e. good, because most of my vertigo attacks now are slight. I still have the violent vertigo attacks, but about once a week as oppose to 1 a day now. I get vertigo attacks daily still, but they are just a slow swirling instead. I am going to get an injection a month to see if we can get the attacks under control. If not, I will be getting the VNS done in December or May.
Aug. 7, 98I got my 6th Gent. injection yesterday. It was probably my last one. My Dr thinks it has made significant damage to my vestibular system, but we wont know for sure until I do the ENG in a month. Last time we did one, my eyes were to wobbly he couldn't get an accurate reading at all. This time, my Dr wants to be in the room to watch me and do some tests himself. He wants a accurate reading as to how much my system is working. My poor-poor-pitiful-ear :(
He wants to do the VNS in Dec. Probably the day after I take my last final. I don't know though, will have to see how life is going by then. I told him how I met Teri and how good she was doing. He was thrilled that I met a fellow MMer, and told me that I will do just as good as Teri did. He said because I am young and have nothing else wrong with me, that I will make a quick recovery and will be back in school by the end of Jan. But, of course, he can't give any guarantees.
Sept 24, 98 I
did the ENG test recently and it was found out that the Gent. treatment
destroyed 73% of the function in my vestibular system. My eyes beat
(nysygmus/back and forth) at 10 beats a second as compared to my right
side (healthy side) that beats at 30 a second. That is good news,
however, I am still having vertigo attacks daily and will still be getting
a VNS done in Dec.