Treatments for Meniere’s – Part 3 Surgery

On March 17, 2011December 9, 2016 By WendyIn Meniere's Disease48 Comments

There are a few different surgeries that are performed as a treatment for Meniere’s, this post will focus only on the 2 that I have undergone. Getting Tubes in my ears, and Endolymphatic Sac Surgery.

Tubes – A Tympanostomy tube (sometimes called Pressure Equalization tube, a Ventilation tube, or a grommet) is inserted in the eardrum to maintain a tiny hole. This procedure is often used to help people with chronic ear infections, especially children. Since patients with Meniere’s normally have fully functional Eustation tubes placing “ventilation” tubes in the ear shouldn’t do anything. However, many doctors still try this, and many patients say that it helps.

I first had a tube put in my right ear in the doctor’s office. No anesthesia at all. I will never do that again. It was a horrible experience. This tube fell out within just a couple of months. I then had a T-tube put in, they are more permanent, often lasting years, and that was done under general anesthesia. This did seem to help my symptoms for a long time. When my symptoms returned we found out my tube had fallen out, at this time I was having trouble with both ears. So I had T-tubes put in both ears. The symptoms did not get better. At this time my old ENT told me he didn’t really know that much about Meniere’s. I immediately found a specialist. Dr. Kaylie, an otolaryngologist told me the reason I felt better could have been that I was just having a period of remission. He pointed out that my tube could have been out a long time before I started having the attacks again, and we simply didn’t check it until the attacks came back.

So did the tubes work for me…maybe, maybe not. I thought they did for a while. (over a year) But the symptoms came back, and the new tubes didn’t help. So I just don’t know.

wendy surgery 001 — Me right after surgery, getting ready to come home.

Endolymphatic Sac Surgery – There are a few different Endolymphatic Sac Surgeries: Endolymphatic Shunt Surgery, Endolymphatic Sac Decompression, and Endolymphatic Enhancement Surgery. Often these terms are used interchangeably, but they can mean very different things.

Endolymphatic Shunt Surgery normally means that the surgeon puts in a tube to “shunt” the fluid from the endolymphatic sac to either the cranium or the mastoid cavity in the middle ear. Most people think that the tube is a “shunt”, but the definition of the word shunt is to move fluid from one area to another.

Often the term Enodymphatic Shunt Surgery is used for each of the endolymphatic surgeries, since the fluid is being “shunted” to a different area in each.

Endolymphatic Sac Decompression Surgery is a surgery in which the surgeon cuts a hole in the endolymphatic sac and drains it, but doesn’t put in a tube.

In Endolymphatic Enhancement Surgery the surgeon doesn’t normally drain the sac, he or she will enlarge the area around the endolymphatic sac so the sac will have more room to expand during an attack. Therefore, the fluid will have more room within the membranes and sac without causing it to leak or burst. This is the surgery that I had, however, my doctor often called it a “shunt” surgery.

Dr. Kaylie put an incision around the back of my ear. He went in and removed part of my temporal bone and skull around the Endolymphatic Sac and Dura Mater. Now my membranes should have plenty of room to become dilated without harm.

We decided to do the right ear because it was the original ear affected, and it was causing most of my vertigo attacks. For months I had very little vertigo, and even when I started having attacks again they were being caused from my left ear. I think my hearing dropped in the right ear after the surgery, however, it has been stable since then. I will now be able to get a hearing aid for that ear since the fluctuations have stopped.

I was very pleased with the results from this surgery. It drastically reduced the number of attacks I was having in my right ear, and it stabilized the hearing in that ear. However, the recovery was difficult. I was in and out of the hospital the day of the surgery, but this is a very invasive surgery. It was painful for months. I think the pain would have been lessened if I didn’t have to wear glasses. My glasses would irritate the incision. I had to take the arm off of my glasses for a long time. I do however, want to stress that this was not an easy in and out surgery. At least it wasn’t for me. The recovery period was much longer than I thought it would be. (over a month) However, I’m not sorry that I did it, and I would do it again if necessary.

***update*** after a year, I ended up having the endolymphatic sac surgery in my left ear too. The vertigo was cut by about 75% for about a year and a half. Then it came back full force. I do not feel this surgery was worth it. If asked at this time, I would not have the surgery again. I’m glad I had less vertigo for about 2 years, but there is a possibility I may have had less anyway, and the surgeries were very difficult (for me) The first was very painful, the second caused severe vertigo for over a week.

I started having attacks again within 5 months of the surgery, but they were being caused from my left ear. It was causing attacks as often as 3-5 times a week. I went in to talk to Dr. Kaylie about having the surgery on my left ear, but he asked me if I would be interested in possibly finding the cause of my Meniere’s. Of course I was interested…

and that will bring us to my next post: Treatments for Meniere’s – Part 4 Stabilizing Abnormal CSF pressure.

I’m also happy to announce that I will be having a few Guest Posts coming up after my next post from fellow Meniere’s patients who will talk about the different treatments they have undergone.

To read more about different treatments, there is an intensive list at Meniere’s Info.com.

If you have any questions about the treatments I have undergone, please feel free to ask me about them, either in a comment or feel free to email me!

Treatments for Meniere’s Part 2 – Medication

On March 16, 2011March 24, 2011 By WendyIn Meniere's Disease7 Comments

Treatment with Medicine – I’ve tried both Antiviral and Immuno-suppressant drugs, neither of them worked for me. The thought behind these treatments? Some doctors believe that there could be a link between Meniere’s and the Herpes Virus, or that it is an auto-immune disease. I don’t know if either of these are true, but some people get relief from these treatments.

Other drugs I’ve been on: Antivert or Meclizine (meclizine hydrocloride)- this is a vestibular sedative, it is prescribed to help with the dizziness. (I think it rather ironic that one of the side effects from this medication can be dizziness.) This worked for a while, when I was having slight dizziness, but it didn’t help stop the vertigo. As my symptoms progressed I was put on Valium (diazapam), this is another vestibular sedative. I had much more success with this drug at preventing the vertigo. However, I had to take more than was recommended to help stave off an attack. Another drug that has been very beneficial to me has been Phenergan. This is an anti-nausea drug that is also a vestibular sedative. I had it in pill form and suppository. If I start to feel dizzy I immediately take a Valium and a Phenergan, sometimes that’s all I’d need. Other times, I would continue to feel bad, like an attack was imminent, and I would need more. I would then take another Valium and a Phenergan suppository. I don’t know if it’s just me or not, but often I would feel like I desperately needed to go to the bathroom and the first suppository would come right out. I would then use another and often that would do the trick and an attack would be averted.

However, sometimes I would have an attack no matter how much I tried to avoid it.

I’ve also been on a diuretic. I know I’ve been on more than one, but the last one I was on was Dyazide (hydrochlorothiazide and triamterene). The thought behind this treatment is the same as with a Low Salt Diet. It is used to reduce bodily fluids especially the fluid in the endolymphatic area.

As with the low salt diet, I’m not sure if this worked or not for me. I was always afraid to stop either the low salt diet or the diuretic for feat that my symptoms would increase. I was taken off of the diuretic after my latest treatment (the Cerebral Spinal Fluid treatment), and my symptoms have been under control.

Not really Medicine, but thought I’d include Supplements – I’ve tried many supplements that promised help with tinnitus and Meniere’s. I didn’t find any help from these. However, some patients swear by them. (Dr. Kaylie said there were no scientific evidence that any supplement actually helped, but if some people found relief he was all for it.)

For even more information on these therapies and other treatments for Meniere’s go to Meniere’s Info.com.

Please leave a comment telling what Medication Therapy you have tried, and how it has helped, or hasn’t. If you have a blog, be sure to leave that address so others can read about your experiences.

Next Post: Treatments for Meniere’s Part 3 – Endolymphatic Surgery

I have Fructose Malabsorption

On March 15, 2011March 24, 2011 By WendyIn Dietary Fructose Intolerance, Fructose Malabsorption, Life, Medical Tests9 Comments

I know I promised Part 2 of Treatments for Meniere’s as the next post, but I got some news today that I wanted to share. It may also go along with the last post.

fruit — image from the fructose malabsorption group on Yahoo

Today I got the results of my Breath Tests, I talked about those previous posts. They tested for digestion issues, Lactose Intolerance, and Fructose Intolerance (otherwise known as Fructose Malabsorption). I have the later.

This is going to take some getting used to. As you probably know I already have to avoid gluten, this will just add to the things I can’t eat. I knew this may be a problem, but I never knew there would be so many things I wouldn’t be able to eat. I’m shocked actually.

According to the diet my doctor gave me there are only 9 vegetables I can eat. And after doing some research on this disorder on the web, I found that one of those vegetables are not recommended. I will be calling a nutritionist tomorrow morning to get in as soon as possible to help me with this.

Not only can I not eat fruit, and many vegetables, I can’t eat any sugar at all.

I don’t know if this aggravated my Meniere’s symptoms or not, but I’m sure it effected me in more ways than I know.

Life without chocolate…*sigh*.

Treatments for Meniere’s Part 1- Diet

On March 14, 2011March 24, 2011 By WendyIn Meniere's Disease4 Comments

In the next few posts I’m going to focus on some of the many treatments for Meniere’s and direct you different personal blogs for people who have tried these treatments so you can go and read how they have worked with other people.

Remember, different treatments for different people. Treatments that work (or don’t work) for some people, may not work (or work) for others. The important thing is that there are many options to help control our symptoms, and there are new options being developed. Don’t give up hope. I almost did and it nearly killed me. There is a big difference in accepting that we have this illness and giving up hope that something may help.

Of course the first treatments I should talk about are the treatments I have undergone.

Change your Diet – Normally, when you are first diagnosed with Meniere’s you are put on a Low Sodium diet. I’ve heard differing opinions as to how much sodium is enough without getting too much. At first I was told to keep my sodium intake at about 2,000 mg per day (1 teaspoon), then it was lowered to 1,000 a day, then I was told that wasn’t enough and I should shoot for 1,500. You should discuss with your doctor about a recommendation for you. The theory behind this treatment is that we have too much fluid in the endolymphatic system, and staying on a low sodium diet should reduce this fluid. This seems to work for many people. Even if it doesn’t totally relieve their symptoms, it helps, and I’ve heard many people say that when they have eaten too much salt their symptoms gets worse. How did this work for me? I continued to have attacks despite how little sodium I ate. I really didn’t see a difference for me. I don’t think a lot of sodium is good for anyone and I still don’t eat a lot of salt. I’ve gotten so used to not eating salt I really enjoy the taste of the food I’m eating without salting it. My total sodium consumption per day is normally between 1000mg and 1500mg.

I was also told to avoid alcohol and keep caffeine consumption to a minimum. I found that alcohol in a trigger. I can have a glass of wine now and then, but that’s about it. If I consume too much alcohol, for me that means a couple of drinks, then I get dizzy and that can trigger a vertigo attack. I don’t consume much caffeine at all. I will have the occasional small piece of Dark Chocolate, and I may drink one drink with caffeine in it once a week or less. I don’t feel great when I consume too much caffeine, but I’ve never felt like it triggered my Meniere’s.

Some people have a hard time with too much sugar, chocolate, nicotine…

I don’t eat a lot of sugar, if I do have too much I find that I get very jittery and can get dizzy. I love a good little piece of Dark Chocolate. I only have a small amount when I eat chocolate, usually less than an ounce. It doesn’t seem to cause me any problems. However, Milk Chocolate has too much sugar and I can only have it in very small quantities.

I’ve never smoked, so nicotine isn’t a factor for me. However, I have problems being around cigarette smoke.

Avoid triggers – I know this isn’t necessarily diet, but it could be if you are allergic, or intolerant to different foods. Different people have different triggers. Some people have food allergies and they can be a trigger. I have a wheat allergy and can’t tolerate gluten at all, so I have cut that out of my diet. This did improve my symptoms. Especially the brain fog.

I also have asthma, but it isn’t bad. However, if I am around strong scents (like perfume, cigarette smoke, or gasoline, among others) I will have an asthma attack. I have found this to be a trigger for me, so I try to stay away from strong scents.

Many people who have allergies find that they will increase their symptoms. I suffer from allergies (grass, some trees, dust…). Whenever my allergies are acting up, my Meniere’s symptoms get worse.

Stress – Stress is often a trigger for Meniere’s patients. I think stress can be a trigger for me, but I’m not sure. Sometimes when I had increased stress I would have an attack, other times I wouldn’t. I think stress is hard on anyone for many reasons, not just Meniere’s, so I suggest you try to reduce your stress as much as possible.

Again, this is just my experience. Everyone is different. You can read more about treatments for Meniere’s on Meniere’s Info.com.

Next post: Treatment of Meniere’s Part 2 – Medication

Please comment on your experience with changing your diet. Have you tried this? Did it help? Did your doctor tell you something different?

Movie Date

On March 11, 2011March 24, 2011 By WendyIn Life, Meniere's Disease7 Comments

I’m so excited. My husband tool me to see a movie today, and I started crying while we were sitting there, I was over whelmed with the fact that I was watching a movie in a theater without closed captioning! I could hear every word. In fact, I thought it was a bit too loud.

It’s been so long since I dared go to a movie. I realized the other day that I didn’t need to “read” the TV show I was watching and was so tickled. So today when my husband asked if I wanted to go see Gnomeo and Juliet, I said, sure. But I was nervous. I hated the thought that we might get in the theater and then I wouldn’t be able to hear the film, what a waste of money. No worries though, I heard every word. Yay! My left ear is doing great! I still can’t hear much in my right ear, but I can handle that. Heck, I just wanted the vertigo to stop, so I’m super excited!

One thought though. I can’t remember the last time I went to a movie that the person behind me didn’t keep kicking my seat. What’s up with that?

By the way. The movie was very cute. I have always been a fan of Shakespeare, and there are little things that allude to him and his plays. They even have a Shakespeare statue that talks. (voice by Patrick Stewart, how cool is that?) I also enjoyed the music, mostly old Elton John songs with the words slightly changed to fit the movie.

Seen any good movies lately?

Feeling Better and Worse

On March 6, 2011March 24, 2011 By WendyIn Hip pain, Life, Meniere's Disease8 Comments

thedancerswithcopywrite — The Dance, by Wendy Holcombe

Great News, the Meniere’s is still staying calm! Virtually no symptoms! Yes, I feel like Dancing!! Since I’ve been feeling better I’ve been doing much more. On Saturday we went to the new outlet mall that recently opened not too far from us. Actually, it was farther than I thought, but we made it. After that long ride, we walked around for a long time. Then we left there, got some lunch, and went to the grocery store. Next, we stopped at the library to pick up a few books I had on hold. Finally, we headed home. I went upstairs to get in more comfy clothes, and saw a print out for an exercise routine that I got off of Faith, Hope, and Fighting Spirit’s Blog. I decided, to try it out. Whew! for someone who hasn’t been exercising, it was intense. Really, it wasn’t so bad, but it calls for many push-ups and I’m really not good at doing push-ups. I am very proud that I got through the whole Total Core Pyramid, and I only skipped a few push-ups. I rested for a while, then made dinner and a friend came over and we watched movies.

What a busy day!

After all of that my hip was hurting so much! It popped and everyone heard it! Ouch! I guess I haven’t been having hip troubles, simply because I haven’t been doing much. When I went to bed my shoulder was hurting so bad after all those push-ups I couldn’t get comfortable. I finally decided to take a pain pill, and it helped. (I took a total of 3 hydrocodone yesterday. The first because I had a headache, the second because of my hip, and the third because of my shoulder.) I don’t think it’s a good thing that I have to take pain pills to get through an active day.

I don’t want to have surgery on my hip again, so I’m going to try to build it up with light exercise, working out in the pool, and having massages. I’m hoping to be able to start going to the pool next week.

My husband is starting a new job on March 16th. He will be working as a contract employee for the first 3 months, then he will be full-time. It’s an exciting and nervous time. This is a much more stable company, and it has better insurance. Of course he won’t have this insurance for the 3 months he is a contract employee, and for the first 30 days after he is full-time, but we will still be on his old company’s insurance, we just have to pay for it. He will still be able to work at home, with great flex time. I just hope he will end up loving what he’s doing! It’s very hard to have a job that you hate, no matter how good the benefits.

To Sum Up:

Meniere’s is doing great.
I’m being much more active.
Hip is not doing so great.
Hubby has a new job.

Oh, by the way, I’m looking forward to my appointment with Dr. Kaylie on the 14th. I’ll be getting a hearing test and we’ll find out just how much better I really am.

Guilty Pleasures while having a Chronic Illness

On March 5, 2011September 9, 2012 By WendyIn Chronic Illness, Life3 Comments

The theme for this edition to the PFAM (Patients For A Moment) blog carnival is Guilty Pleasures. You can see all the submissions on Sick Momma’s blog starting March 9th.

A Guilty Pleasure is defined as something one enjoys and considers pleasurable despite feeling guilt for enjoying it.

I have a lot that I feel guilty for, but not many pleasures that I feel guilty over. But I do have a few…

Each of these I feel a little guilty about because I either feel like I should be at least trying to do something more productive, it cost money and I don’t work, or because I feel like I’m taking advantage of my husband.

I love spending time on my computer, reading blogs and posting on my blogs. The computer is sometimes a great escape, and it is often a way for me to communicate with other people.

I also love that I have more time to read because of my illness. I can get lost in a book. They help me escape, and learn. I will never get tired of learning new things. I think reading helps to keep my mind active and has lessened my brain fog. But still I often feel I should be doing something else.

I love for my husband to massage me. He is such a great help to me, and I don’t get to pamper him near enough, but I love it when he pampers me. He takes care of me all the time, but I get so much pleasure from having him rub my neck and back. Oh and when my hip is giving me a lot of trouble, he is wonderful at trying to make it better.

I also love going to get a professional massage. I don’t do this very often, and I always feel guilty afterward, because it cost money. Plus, I feel like if anyone should be getting a massage, it should be my darling husband. He works so hard, and he treats me so well, he deserves to be pampered.

I have a secret obsession for shoes, and purses. I’m trying hard not to buy any new shoes or purses, but it’s so hard. I try to find them at thrift stores, and I have found a few. But when I’m looking for something in particular it’s hard. Don’t get me wrong, I don’t buy a ton of shoes or purses. I am, however, on a constant search for the perfect purse. This is very funny coming from me because I used to never carry a purse and was proud of it. However, now I have to carry an epi pen and an inhaler with me all the time, so I have to carry a purse. And shoes! I don’t buy a ton, but I have a weakness for funky tennis shoes, and shoes that look great but are still comfortable. I don’t give in to this guilty pleasure very often, but I just can’t help myself sometimes.

love makeup — image from roxyishere.wordpress.com

I also love to find great make-up and facial products that are made from natural ingredients, are gluten-free, and haven’t been tested on animals. This is getting easier than it used to be, but it’s very hard to find a product that fits all those categories, that is still affordable, and lives up to what it promises.

One more I really like having a manicure or pedicure, or even giving one to myself. I love wild fingernail polish.

I keep thinking of these things that I just love to do, but feel at least a twinge of guilt when I do them. The question is, should I continue to do them and feel guilty, should I stop, or should I stop feeling guilty about it?

I made a compromise a long time ago, and I think it’s a good thing. I don’t over indulge in my guilty pleasures, this makes me feel much less guilty. As much as I love shoes, purses, manicures, polish, massages, and books I don’t buy very many. I get about 2 new pairs of shoes a year, I average 1 purse a year, 1 mani-pedi a year, and 2-3 massages. I haven’t bought new polish in a long time, however, I have made new colors by mixing a few together. I rarely ever buy a book, however, I love my local library!

I think the one guilty pleasure that I have that I probably need to do less, is staying on my computer. I think I should try to limit it to less than 2 hours per day.

By incorporating these restraints I feel much less guilty about my guilty pleasures. After all, shouldn’t we all have a few pleasures that make you feel like you are splurging?

What’s Up with Wendy

On March 3, 2011March 24, 2011 By WendyIn Hip pain, Life, Medical Tests2 Comments

It’s beginning to look a lot like…Spring! The cherry trees are blooming. The grass is starting to have little green spots. The weather is crazy; one day it’s hot, the next day it’s cold. Spring is trying to…well..spring! It’s an exciting time, watching life begin. We are busy planning our garden, it’s so nice to think that this year I will be able to have a garden. This is the third year we’ve been in this house, and I really wanted to have a garden, but this is the first time I thought I might actually be able to take care of one!

I’m so excited about how well I’ve been feeling. I’ve been busy, busy, busy doing things I haven’t been able to do in so long. I know it probably sounds crazy, but I’m so excited about being able to clean! Yes, I scrubbed our bathroom and was just so happy! I’ve been doing laundry! We have a front loading washer and dryer and before I couldn’t load and unload them without getting dizzy, so doing laundry is just so exciting.

I’m sure I won’t be as excited about doing house work for long, but right now I’m just so happy.

I’m also excited about something else. I haven’t had diarrhea in over a week now! I don’t know what has changed, but I’m so very happy. Now if I could just take off this weight! Hopefully, now that I can move more the weight will start to come off. I sure hope so.

One unfortunate thing about moving more, my hip is starting to really bother me again. I’m hoping to start going to the pool and working with it. I don’t know if it will work, but it has before. If not, I guess I’ll have to start considering surgery. But not until I’ve exhausted every other option!

Right now I’m doing the last Breath Test. Today is the fructose test. The stuff I had to drink was so sweet, I still have a sickly sweet taste in my mouth. I’m so hungry, I haven’t had anything to eat since about 8:30pm last night. Just 2 more hours to go, and I’ll be finished! I’m looking forward to finding out what these tests show. I doubt it will show anything, as usual, but at least I will know. : ) I’ll let you know next week!

No New Punctures for Now

On February 28, 2011March 24, 2011 By WendyIn Medical Tests, Meniere's Disease3 Comments

I just got off the phone with Dr. Gray. I told her how much better I’m feeling, and she said she didn’t want to even test my pressure if I’m feeling this good. She doesn’t want to mess around with things.

She is very hopeful that I will continue to feel better. (me too!)

I am wondering if the reason I’m feeling so much better is because I stopped taking Topamax. It can lower your pressure, so it could have been causing my pressure to be too low. Or it could also be because I started taking B12 shots. Tomorrow will be week 3, so I should really be starting to feel a difference there. I have much more energy, and I just feel better. Perhaps a combination of the two has really made the difference. I don’t know, but I’m just grateful to be feeling so very much better!

What a difference from just a couple of months ago, huh?

Oh, I am talking on the phone again! I had 3 conversations on the phone today and I was able to hear the people, and I didn’t get nauseous. (often when I tried to talk on the phone before, even when I could hear, it made me so dizzy I would get sick to my stomach)

What a nice day!

On February 27, 2011March 24, 2011 By WendyIn Life, Meniere's Disease5 Comments

I had such a nice day today, I just had to share it.

My hearing is better. No symptoms at all really! Yay!

Today we went to the co-op first and stocked up on groceries for the week. We came home and made burgers. We cooked them on the grill, and then we ate outside. It was about 80F! So cool.

Then we went to look at cars. For ME! Yes, we are looking at buying me a car. For years we’ve been a one car family, but one of the biggest reasons I don’t drive is because I’m afraid that I will get out and have an attack and won’t be able to get home. I would just feel so much better I knew I could call Stuart to come get me if something happens and I feel like I can’t drive.

This is the car I test drove today:

How cool is that? We drove it with the top off, and it was so much fun!

Not sure we’ll get this car, but it sure was fun test driving it.

Another nice thing about today…my husband has been flirting with me all day. It’s so nice. He so often has to be my caregiver, it’s so very nice for us a day where we are just a married couple, in love, and having fun together.

I’ve been feeling great lately. I still have my lumbar puncture scheduled for Wednesday, I think I’ll try to do as much as I can from now until then. That way if over doing it is what caused my last set back, it should do it again.

Tomorrow, I have another one of those Breath Tests. On Friday when I could finally eat I had such a horrible headache I was forced to bed for hours. I hope tomorrow’s experience is better.

Today was such a nice day.

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