During the Blood Patch Stuart asked if he could take some pictures. They said it would be no problem as long as he didn’t show anyone but me, and as long as the screen showing my name wasn’t in any of the pictures.
In this photo you can see me in the CT Scan, they are lining up the next leak to patch. You can see the screen on the left hand side that shows the pictures from the CT scan.
This photo shows how the CT scan has a laser light that shows them exactly where to put in the needle.
Here’s a better view of the laser light, it’s even shining off of the needle they have placed in my back.
Here you can see the blood being put in.
This photo is very similar to the previous one, but you can see the needle in this one, and see just how very thin it is.
It’s all over at this point, except for the washing up with the nice warm wash cloths. You can see where they marked my back, and the puncture marks. You can’t see that each puncture is raised a bit. The puncture the lowest on my back, almost out of the picture, is the sorest one. That’s where they did the pressure test, put in the dye, and then patched that spot. It’s still a little sore, but really only if I try to over do it. This was not a hard procedure to go through. The doctors made sure I was as comfortable as possible. The pain afterward has not been hard to deal with. The hardest thing was that I couldn’t get up and cook on Thanksgiving. I love to cook, and I admit, I love to show that off on Thanksgiving. : )
Thank you to everyone who sent me good wishes for going though this procedure. I’m happy to say that I do think it has done some good. I’ve been able to close my eyes and shake my head without getting dizzy….That was amazing. This evening, I’m feeling a little off, but I over did it today. I was supposed to do very little to nothing for 3 days. Today, I went with my husband up to a little mall near here…NO we did not go Christmas Shopping. He needed to look for something at the computer store, then we decided to get some lunch. Well, I did run in one store and buy a Christmas present, but I had a coupon, and it didn’t take long.
Oh, who am I kidding, by the time we got back to the car and I sat down I was in enough pain that I wanted a pain pill. (I’m not a big fan of pain pills.)
Still no headaches, no real dizziness (I don’t think I’d really count the fact that I feel a little off this evening, I think I just wore myself out.) I’m hearing better out of my left ear. I still can’t hear from my right ear, I still have tinnitus, and I still have that full feeling (mostly in the right ear).
I’m here on the couch trying to figure out if I feel different. I can say I don’t have the disequilibrium as much as I usually do, I can turn my head around and around real fast and I don’t start getting sick!
The hearing in my right ear doesn’t seem to have changed much, but the left ear seems better. However, it is the ear that fluctuates any way. Also, it’s over cast today, I didn’t sleep well at all last night, and I still don’t have a headache. (that is very unusual.)
Now ….What did they do?
First, they had to insert an IV, to give me a sedative and so they could take blood out of it. Finding a good vein on me and getting an IV started took close to 30 minutes. I do not have good veins, especially if I haven’t had anything to eat or drink for about 11 hours. But she only stuck me twice, and she did a good job. I do have a big bruise today, but that’s not unusual.
Dr. Gray took another opening fluid pressure check. My pressure was higher, 17.75. I think she was surprised about that, I know I was. That is pretty high in the “normal” range. But, she said, “maybe you need more.”
They inserted the dye, it causes an ache on one side until they move you around and get it moving, then the ache goes away, but it did give me a headache.
I was put on my stomach on the CT scan, all I could see was the “bed” below me. I had to have my arms up over my head, this wasn’t the most comfortable I’ve been, but it isn’t the least comfortable I’ve been either.
They then started putting me through the CT scan to look for leaks. They found a few. She said she didn’t want to over patch me, because she was afraid my body wouldn’t be used to the higher pressure and would start feeling worse, especially the headaches.
They did 4 Blood Patches. I’m very sore today. Dr. Gray called me this morning to check on me, and she said she would call again tomorrow.
I think I may have tried to do a little too much in the kitchen, I just hate not being in charge in the kitchen. I love to cook, and leaving it to someone else is hard, especially on Thanksgiving. But, I did get everything started, so I hope Stuart won’t have too much trouble.
I will be posting some pictures of my procedure as soon as I can get them off my husband’s phone. I think they are very interesting. I will also give you more information on the procedure when you can see the photos.
I’m really tired now, and think I should rest. Perhaps another pain pill soon. (I’m only taking 1/2 at a pill at a time, I don’t like feeling dopey.)
I hope everyone is having a wonderful Thanksgiving.
We will just have to give this some time to see if it worked.
Thank you all for checking on me, sending me notes…. You have no idea how much it meant to me.
I tossed and turned last night and had a hard time waking up this morning. Finally, I forced myself to get up around 11am. (I should have stayed in bed.)
After breakfast and a quick trip to the store to see if I could find a dish that would fit in one of the slow cookers at the house, so we could make the cheese cake, I started preparing things for Thanksgiving. (No, we didn’t find anything that would fit, so I had to make 2 small cheese cakes.)
When we came home I started to work in the kitchen. First, I needed to print out my recipe for GF Stuffing. The biggest mistake I made was checking my email.
OK, this is the 3rd time that I’ve tried to write about this. But without getting into details, it appears that I will no longer be able to have a relationship with my niece. My husband’s sister is mad at us because we got upset when they defaulted on something we co-signed on for them. It’s horrible. I love my niece dearly, she will be 3 in February, and now I won’t be having a relationship with her.
So then I cut up the veggies for the stuffing, I should not have used the food processor, because the onions and celery now look more like soup than chopped. I toasted the bread for the stuffing, and cut it into little cubes. I made an herbed butter to put on the Turkey, I made up my own Poultry Seasoning, after reading what was in the poultry seasoning I bought I didn’t want it in my food. I made the cranberry sauce, and the cheese cake. My husband trimmed the asparagus and the green beans.
Then we went to the store and picked up our turkey, and Brussels Sprouts.
When we got home, we saw our neighbor, who was telling us the latest scoop on our HOA. You would not believe the power trip these people are on. They are breaking so many rules, fining people for nothing, and taking away rights. I simply do not understand, we live in a small neighborhood (only about 85 houses), you would think we could all get along. So this got me all upset too. We feel so helpless. There are so many ridiculous things going on in this neighborhood, and even if we could do something about it, right now we just don’t have the energy with everything that is going on with me.
Well, at least the cranberry sauce is done, and the cheese cakes are cooling. Everything is pretty much ready to go.
Except me. I’m absolutely terrified about tomorrow. And all this stress from today is not helping things. I don’t know how I’ll sleep tonight. I’m happy I was able to go by the library today and pick up a bunch of books that were on hold for me. At least if I can’t sleep, I won’t be bored. I do so love to read a good book.
I just finished American Gods, by Neil Gaiman. A very thought-provoking book, of course I’ve liked everything I’ve ever read my Neil Gaiman, so it was pretty much a given I’d like this book. (my favorite of his is a young adult book, called Graveyard. A great book! of course Good Omens with Terry Pratchett is awesome too.)
Reading is one of my stress reducers. What do you do to reduce stress?
On Wednesday I go in for Dr. Gray to look for my spinal fluid leak and give me a blood patch. (I think it’s so cool that they can repair it with your own blood.)
I’m so nervous, excited, scared, apprehensive…….
I want this to work so much. I keep envisioning my life without all the turmoil caused by Meniere’s, and all the pain caused by my migraines. Do you think if I believe it enough it will come true? Or am I just setting myself up for heart ache? Either way, I’m trying to be prepared. And I’m trying to stay busy until Wednesday, so I don’t think about it too much.
Today I went Christmas Shopping with my cousin. I was so nice to spend some time with her. After about 3 1/2 hours, of shopping, and lunch, and just visiting I started feeling off. You know that feeling, I’m not quite at vertigo, but if I moved my head too fast I’d probably fall down? So I took a Valium, and we headed home. We made sure to just go shopping close to my house, just in case something happened Faith could get me home in a hurry. Luckily, everything calmed down after I got home and started to rest and got a little something to eat. I still hate it when things like that happen though.
Tomorrow, I’m going to be preparing for Thanksgiving. I’m going to cut up all the veggies I need, toast the bread for my stuffing, mix up a herb butter to rub on the turkey, make the cranberry sauce, and make sure we have everything we need. I’m also going to plan out a time schedule for all the dishes. When each crock pot should be turned on, so that everything is done at the same time.
Thankfully, the friend who is coming for dinner doesn’t care if my house is messy. I know Stuart will straighten up some, and I’ve begged him to vacuum. The pet hair is out of control. It’s funny, I said that to my husband, and he said he hadn’t noticed. I see hair everywhere.
May you all have a very Happy Thanksgiving.
I will let you know how the spinal fluid blood patch goes, as soon as I feel like getting on the computer after the procedure. Who knows maybe I’ll have pictures from the hospital.
I already have a lot to be Thankful for, but it would be nice if we had a whole lot more to be thankful for in a couple of days.
This is the time of year to remember to be grateful, and thankful for all that we have, and remember those who are less fortunate. May your Thanksgiving find you with much to be grateful for, and realize how much people are thankful for you. Also, may all your Thanksgiving meals be scrumptious.
Yesterday my husband had the day off because he has to work this Saturday. It’s neat to have him all to myself on a day during the week, but it’s sad we won’t have Saturday. So we decided to do some shopping!
Streets at Southpoint Mall, Durham, NC
The Christmas shopping sales started a little early this year. We got a flyer from Macy’s and they had a Cuisinart Immersible Blender on sale for $18.99, I was excited because I really needed to replace mine. I was also looking for a mini-slow cooker. One that’s only about 1.5 quarts, I found one at J.C. Penney for only $9.99! What a great find.
We walked the huge halls of The Streets at Southpoint Mall for a couple of hours, checking prices, deciding on if we really needed something, and finally having lunch. I was so tired. But we had 2 more stops to make. One at Target to see if they had a couple of things we needed, that trip proved fruitless. And a stop at the hardware store to pick up a timer for my crock pot, so I can now leave it on when I leave the house and don’t have to worry about getting home to turn it off, and a couple of other things we needed around the house. We got a call while we were in the hardware store and found out it would be a good time to go and pick up one of the Crock Pots I’m borrowing for Thanksgiving.
So off to pick up the Crock Pot….and a nice visit with our friends. Including seeing their new baby.
By the time we got home I was exhausted. My whole body hurt. Especially my hip. When I tried to sleep last night my hip hurt so much I just couldn’t sleep, even after taking Trazadone. I also had to take a pain pill. I hate taking all that medication. Finally, I got to sleep, and it wasn’t really that late.
Just like me asleep with the dog and cat.
This morning I got up and ate some breakfast, but I felt so droggy. I felt like I was still feeling the effects of the drugs I took the night before. So I put some beans, BBQ sauce, and Chicken hot dogs in the new small cooker and I went back to bed, I did not want a repeat of the way I felt on Sunday. I slept until about 3pm.
When I woke up, I felt much better, and the house smelled like someone was cooking. Of course, it was my slow cooker telling me I could eat any time I wanted. I was surprised that it was pretty good. There was a lot more liquid in the mixture than I put in, so I would have liked it more if it was thicker, but it was still good. I ate my Beans and Dogs with my home-made Sauerkraut. It was very good. However, before I was even finished I was running to the bathroom, again. Every day, it’s crazy. I keep having to run to the bathroom from 1-5 times a day. (3 today)
So later, I wanted something else to eat but I was afraid of eating anything too heavy. Unfortunately, I’m out of bread and haven’t made any, and I’m also out of any plain crackers. So my darling husband make me a few pancakes. After eating I’ve had the worst heartburn. I took Maalox, something I don’t like to do, I stretched, my husband patted me on the back, I burped a lot, but nothing seemed to help. Finally, I ate a little apple sauce, and everything is calming down.
I read about an Acid/Alkaline diet a while back and the main part of it I didn’t really pay attention to, but I did decide to try some eating some of the foods that they have on the highest Alkaline list when my stomach starts to scream with too much acid, and acid reflux. During the summer, this is easy because Watermelon is a very alkaline food, but now that it’s fall, I didn’t know what to eat. So of course, I searched the handy-dandy internet (how did we ever get along without it?), and found that apples are also a highly alkaline food. Not as alkaline as watermelon, but still pretty high. And the pectin in applesauce is supposed to help with GI problems. Maybe I should eat more applesauce, or perhaps I should make another apple crisp? Ummmm, apples.
Saturday was an ok day for me. I had a bad attitude, but other than that, I was able to go out to lunch with my husband, and run some errands. We even ordered our little Organic Turkey Breast from Earth Fare, for Thanksgiving. I’m pretty proud of myself that I really think I can pull off having a Thanksgiving dinner without getting off the couch. More about that in my next post.
Me and Sandy
Sunday, was not a good day. I know it was because I couldn’t sleep Saturday night so I was all out of whack on Sunday, but knowing why, and having it happen, really doesn’t help that much does it? I didn’t get to sleep until after 4:30am. Then my dear dog woke me up around 11am. She really doesn’t bother me much, she usually goes to Stuart for everything when I’m asleep because he will wake up and give her things, I often don’t even hear her. However, I was sleeping a little too late for her, and she decided she had to check on me. She cuddled up right at my face, she was so cute, but I really wasn’t awake enough to get up. But I did anyway. Straight to the couch.
My hubby made me breakfast, but I was still hungry. But I was also very dizzy. He said he was going upstairs to take a shower, so I decided to go upstairs too, just in case something happened he would be able to hear me. I ended up crawling up the stairs, and hobbling to the bed with much help from Stuart. I took a Valium and Phenergan. After about 20mins, I still felt bad, so I used a Phenergan suppository too.
I was so sleepy, but every time I closed my eyes the world would start to spin. Does anyone else ever have that happen when you are really tired? I don’t feel well even with my eyes open, but at least the world isn’t going round and round, then as soon as I close my eyes I feel like everything is moving. It’s hard….I’m so sleepy yet I’m afraid to close my eyes.
I was still hungry though, if I’m hungry my symptoms get worse. So Stuart brought me half of a sweet potato. It helped. He then left to start grilling chicken. I had left over Wild Rice Blend I’d made in the crock pot the day before, and I made a pot of black beans over night on Saturday night. We also had broccoli we bought the day before. It was starting to smell very good downstairs, but thankfully, I dozed off. And slept for a couple of hours.
So, the great lunch my darling husband was making, became my dinner. It was very good. I was feeling much better, but I was still suffering from some pretty serious disequilibrium.
Today, the disequilibrium is still there, but I am hearing better out of my left ear than I have in months. What’s up with that? I even did without my amplifier when Stuart and I were having a chat over lunch. That was nice.
My hearing is still pretty tinny, and it’s not picking up all frequencies just right, but I can understand what my husband is saying. I love that.
I’ve noticed lately that I’ve had a very bad attitude about my life in general. I’m not usually like that so I was trying to think about what may have changed.
I have been dealing with an unusually long Meniere’s attack. Well, not an attack per se, I’m not having constant vertigo and throwing up, I don’t really know what to call it. I think you would say I’m in an Acute mode. My hearing is down, the full feeling and tinnitus is up, and I feel like at any minute I might start having vertigo. I’m also having disequilibrium all the time. You know that feeling where if you turn your head too fast, or look down, the world moves a little all on its own, but it doesn’t keep moving like it does when you have full-blown rotational vertigo.
Yeah, that’s been happening, but it’s happened before. What’s the biggest difference this time?
I have hope that it may end for good. And I’m very, very scared about it.
When I had the endolymphatic “shunt” surgery, I had hope that the vertigo would end. At least the vertigo being caused by my right ear. But I knew I would still have to deal with a lot of other issues, and I also knew that often this surgery doesn’t last forever. So, yes, hope, but not like this.
This time I think I may have a “cure”. And as much as I’m trying not to believe, not to get my hopes up, it’s just not working. Then I get so scared. What if it doesn’t work? What if nothing changes? Yes, I will have the opportunity to have the “shunt” surgery on my left ear, but it won’t be the same. When I go through this procedure on November 24th, I’m expecting some kind of a miracle. I’m not expecting to get all of my hearing back, I do expect to get some of it back, and I expect the loss the stabilize. I’m not sure what I expect about the vertigo, but I have such hope. And I half expect my migraines to be a thing of the past.
If this doesn’t happen I’m afraid I’m going to lose it. I’m really afraid I will drop into a deep depression and hate the world for a while. Already, due to the fear from all of this, I find myself mad a lot. I have been re-evaluating my life and it has come up lacking. So if this miracle doesn’t happen, how will I feel then?
I had accepted that I had Meniere’s Disease. I accepted that it was not curable, that no one knew the cause, and I was disabled because of it. Don’t get me wrong, I never stopped looking for answers. I kept looking for anything that would change this, but I accepted that it may not change.
Now, I have hope. And I’m afraid, it’s false hope.
I’m simply not too sure if I’m strong enough for the let down.
I need to remember, if this causes me to fall down, I simply have to get up again.
Even if this doesn’t work for me, I hope it will at least give the researchers more information where they will someday be able to help more people like me.
Let’s face it Meniere’s is a rare disease. It is listed in the National Organization for Rare Disorders. Rare diseases do not get the big research bucks. There isn’t enough money to be made off of them. Yes, it seems like there is a lot of research going on with Meniere’s right now, but the prosthesis they are making are not just for people with Meniere’s, it will be used to help people with countless other balance disorders. Even the research that Dr. Gray is performing, it didn’t start as a search for a cause for Meniere’s. She is finding out that an imbalance in Cerebral Spinal Fluid is the cause for a lot of problems.
I’m extremely grateful for this research, and I hope it will find a way to help more and more people with Meniere’s. I was just having a little reality check there.
So, if things don’t get better after my procedure I may need a little hand holding, and possibly a swift kick in the pants to tell me to get up and dust myself off, I can make it anyway.
Courtney had some questions about my procedure and I thought I’d answer them here, just in case other people had the same questions.
I really don’t mind the questions, I’ll answer any that I can, and if I can’t I’ll try to find out the information from my doctors.
First, let me say that I am the first patient with Meniere’s that they’ve tried this on who has low spinal fluid pressure, but my doctor said that this is so new they don’t know if that is unusual or not. Everyone else they’ve tested with Meniere’s had high spinal fluid pressure.
Getting the spinal fluid pressure regulated (in my case, getting the patch so I’ll stop leaking fluid) will hopefully get rid of all the icky symptoms including the Vertigo. That’s the biggest hope. It will possibly restore some of my hearing (this one I’m kind of expecting after the test, but I’m really trying not to get my hopes or expectations up at all). However, it may not “restore” my hearing, it may just make it a little better and stabilize it enough where I can get hearing aids. It also may stop my migraines. (wouldn’t that be fantastic?)
Even if this doesn’t work for me, it doesn’t mean that it won’t work for other Meniere’s patients. As I said, I’m a little strange because I have low pressure. It has helped other Meniere’s patients. However, this is very new.
Oh, she also asked me if it was just my hearing that improved during the test…No. I was dizzy when I was lying there while she was performing the test, and I had a horrible headache. The first thing I noticed was that my headache was gone, then I realized I wasn’t nauseous or dizzy any more. Then I really noticed that I could hear everything that people were saying in the room. It was still muffled, and my right ear was doing better than my left, but I could hear! Dr. Gray was behind me and I had only been able to hear bits and pieces of words, then all of a sudden, I could hear every word she said. (unless she whispered, which she did just to test, and play with me.) Her assistant kept moving his mouth like he was talking and wasn’t really saying anything, just to pick on me. I actually smacked him one time. I was in a much better mood after the test.
If this doesn’t work for me, if for some reason they get in there and can’t find a leak, I don’t want that to discourage anyone of you who may be looking at this. Dr. Gray told me of 2 remarkable cases she has worked on recently. One lady had been deaf for over 18 months and on the table she began to hear again. Another patient already had cochlear implants, and when they were finished she had to have her implants adjusted because she could actually hear better. That was amazing to me. I don’t know if either of these women had Meniere’s or not. But I do know that the patients they’ve treated with Meniere’s so far have seen drastic improvement. I also don’t know if the patients have had unilateral or bilateral Meniere’s. I have a feeling it has probably been mostly unilateral, because I’m one of the less than 20% of Meniere’s patients who has bilateral, so I can’t imagine that they would have that many bilateral patients. However, they may have been trying this on bilateral patients first. I don’t know the answer to this, but I will ask Dr. Gray when I see her on the 24th.
I told Dr. Kaylie about my blog, and he jokingly said, “So, if this is a success we are going to have a lot of people calling us huh?” I told him that I hope so. : )
There is one thing you can really tell about both Dr. Kaylie and Dr. Gray, they get excited when they can find out the cause of something. They care. If they can find out what is causing our symptoms and help us, they will be so pleased. When I had such a positive reaction to the increased spinal fluid that Dr. Gray gave me, she actually gave me a high-five. She loves what she does, and she’s darn good at it, and she gets really excited when she finds a way to help someone.
OK, enough praise for my doctors. If any of you are interested in this testing, I would say to get in touch with Duke. Either Dr. Kaylie’s office, or Dr. Gray’s. If you can’t come to Duke, they may be able to suggest a doctor in your area who could do the same testing.
I saw Dr. Kaylie today. He is such a nice doctor, he really listens, will joke around with you, and just has a great bed side manner. It’s so refreshing after some of the doctor’s I’ve seen. Here’s a link to a story about the Vestibular Testing that they do at Duke I thought you might find interesting, it also mentions a bit about Dr. Kaylie. I went through all of the Vestibular testing except for the test where they run warm and cold water in your ears (I had tubes in my ears so that test wouldn’t have worked).
I had a few questions for him about the procedure I’ll be having on November 24th, (the Cerebral Spinal Fluid Patch), and I found out a few things that are different about my case.
I wanted to know how soon I should feel a difference after the patch. He said if Dr. Gray “tops me off” with the artificial CSF I will feel immediate improvement. However, even if she doesn’t our bodies are always making new CSF so I should feel improvement within hours of the procedure. That’s exciting. But I’m trying so hard not to get my hopes too high. As he said, even if it will slow the vertigo, or get rid of it, and stop the hearing loss, that will be great. Because if the hearing loss is halted or improved a little, I could get hearing aids since it wouldn’t be fluctuating any more. The best we can hope for is, no more vertigo, hearing restored, and no more migraines. But I am just hoping to stop the vertigo, and make it where I can hear again.
There are 2 things about my case that are different from other Meniere’s patients he has seen. 1- I developed bilateral Meniere’s almost 15 years after my first attack. He said I’m the first person he’s ever seen that it has taken that long. If a patient is going to get bilateral Meniere’s it usually happens within the first 5 years. 2- I’m the first Meniere’s patient that they’ve done the CFS pressure test on that has low pressure. Of course, there haven’t been many yet, so he can’t say I’m an anomaly, but so far I’m different.
Usually, Meniere’s patients have high spinal fluid pressure, that can be treated with a drug. It makes sense since Meniere’s is thought to be caused by too much fluid in the ear.
I asked him if I should stop taking the diuretic since I have low pressure and at first he said yes, then he said maybe we shouldn’t change too many things at one time. I can understand that, we want to make sure my progress is because of the CFS patch and not something else.
Stuart asked Dr. Kaylie about my hearing voices when I’m having vertigo, and he said it’s not too unusual. He said he has one patient who hears music, and not just little bits of music like I do, she hears a whole orchestra. Unfortunately, she hears the same song most of the time. Talk about having a song stuck in your head! I bet you never thought you would hear of someone who could say that literally. : )
I have decided that I should email Dr. Gray and ask her how I’m going to feel the day after this procedure. It is Thanksgiving after all. We are invited to friends’ house to celebrate, but I’m not sure if I’ll feel like the 30 minute drive, and then sitting around with people. If not, I’ll whip up a nice Thanksgiving meal for Stuart and I the day before my procedure (I refuse to call it surgery), and we can eat it on Turkey day.
I am so proud of myself today! First Stuart and I went to the little Mall near us on the way home from the clinic, and we had a nice little walk before eating a small dinner. Then we went to Whole Foods – I found Coconut Secret’s Amino Acids. This is a gluten free and soy free sauce that is a soy sauce substitute. I can’t wait to try it! I really think I’m having trouble with soy, but I just can’t stay away from Tamari. I love stir fry’s and just soy sauce flavor in general. This not only has no soy or gluten, it also has significantly less sodium. I also found Bob’s Red Mill’s Gluten Free Quick Oats, I’ve tried their GF Rolled Oats before, but it just seemed to have too many hulls in it. (I didn’t feel like the quality control was very good.) I usually put those in the blender first for a little while before I use them. (Oh, and the Quick Oats were cheaper than the Rolled Oats! Score!)
Mainly I’m proud of myself because I did more exercise than I’ve done in a long time. I did about 20 reps of each of the following:
partial push-ups *this was very hard for me, I was surprised and embarrassed with myself.
outer leg lifts
inner leg lifts
bridge
clam shell
rear leg lifts (to help with the glutes)
tricep curls
Then I did some yoga stretches. In all I worked out for about 30 minutes. I didn’t realize it was this long until I noticed a whole program of Cash Cab had come and gone and I missed reading any of the questions. I didn’t do great with my diet today, but I was still running to the bathroom so much I was just happy to get something in me that didn’t hurt, and would stay in.
I think the hearing in my left ear is coming back a little, but often that is more annoying than when I can’t hear anything out of it. It is so tinny sounding until it comes back more. If I put the amplifier that I have in that ear, everything sounds high pitched and down in a barrel. It’s horrible. But wearing the amplifier in my right ear all day gets sore after a while. So I just mute the TV and read the captions, or I get on the computer, or read.
What do you do when you can’t hear?
Do you feel awkward about other people?
Do you feel left out of things because of your disease? Not necessarily because you aren’t invited to things, but because you feel like you can’t go.
After my last post I was asked a few questions about what this means and how it works. I will admit that I don’t really understand everything about how decreases or increases in Cerebrospinal Fluid (CSF) affects Meniere’s but I think I can answer some of the questions.
Nicki asked: “if they find the leak, could your hearing come back?” From my understanding, yes, at least part of it. And it would stop deteriorating.
“what’s their theory behind all of this?” I found a pretty decent explination on Dizziness and Balanace.com “The hearing loss of CSF leak likely results from lowering of CSF pressure, which lowers perilymphatic (inner ear) pressure, and results in a picture similar to Meniere’s Disease.” (Walsted et al., 1991) My doctors also think that too much CSF could cause Meniere’s symptoms, that explains why a low salt diet and diuretics work for some people. They may be the people who have just a little too much CSF.
“is this something they think would work for all meniere’s patients or just certain subsets?” I don’t know. I will ask my doctors when I see them again. Since there is still no known cause for Meniere’s there may be many different causes. I’m sure a lot of doctors who would have checked my opening pressure would have said, “oh, you are in the normal range, so it can’t be this.” This is one of my biggest complaints about most doctors, they believe everyone has the same “normal” range.
“could i think of anymore questions to ask you?” Probably, but I don’t know if I’d have the answers. : )
Some of the information from the Dizziness and Balance.com site sounds like what my doctors have said, other parts do not. They don’t mention that an increase in CSF can also cause these symptoms. I know my ear doctor originally expected me to have higher spinal fluid pressure. They think it may also be why shunt surgery works on some people, because they are displacing some of the CSF.
I had a freak accident when I was 28 years old, I was in a commercial kitchen at a nursing home and one of the huge exhaust fans had a blade break and it knocked the cover of the fan off and they hit me in the back of the head and neck, it actually fractured the C-7 vertebra. Dr. Gray thinks this is probably where they will find my leak. The first Meniere’s attack I can remember happened a little over a year after my accident.
I will see my otolaryngologist, Dr. Kaylie, on Monday. I’ll see if he can explain things better to me.
In this photo you can see me in the CT Scan, they are lining up the next leak to patch. You can see the screen on the left hand side that shows the pictures from the CT scan.
This photo shows how the CT scan has a laser light that shows them exactly where to put in the needle.
Here’s a better view of the laser light, it’s even shining off of the needle they have placed in my back.
Here you can see the blood being put in.
This photo is very similar to the previous one, but you can see the needle in this one, and see just how very thin it is.
It’s all over at this point, except for the washing up with the nice warm wash cloths. You can see where they marked my back, and the puncture marks. You can’t see that each puncture is raised a bit. The puncture the lowest on my back, almost out of the picture, is the sorest one. That’s where they did the pressure test, put in the dye, and then patched that spot. It’s still a little sore, but really only if I try to over do it. This was not a hard procedure to go through. The doctors made sure I was as comfortable as possible. The pain afterward has not been hard to deal with. The hardest thing was that I couldn’t get up and cook on Thanksgiving. I love to cook, and I admit, I love to show that off on Thanksgiving. : )
Picnic with Ants 