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1303966 tn?1296740010

Miniere's disease anyone?

Can Chiari cause Miniere's disease?  I hope I spelled that right.  I have been having a lot of problems with my ears.  They feel full and I feel like I'm under water.  My hearing is muffled.  It's driving me crazy!

We finally captured epileptic discharges on my EEG and I'm now on Zonegran.  I'm feeling a lot better with the exception of my ears.  I was at the ENT yesterday and they want to rule out Miniere's.  

What next?
29 Responses
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620923 tn?1452915648
COMMUNITY LEADER

  So glad u r getting in to see a Dr and hopefully to get answers to help u feel better.

I know what u mean I still have days when my vision plays  with me and I can not sew or do what I want....but, it gets better with time.....

hang in there : )
Helpful - 0
1962343 tn?1327958272
I did just get a call from Dr. Trammell's office...I will be seeing him on the 31st..This is almost a month sooner than I would have been able to get in to UT Southwestern and that is where this particular doctor did the majority of his training..I'd been waiting for the call the biggest part of the week, so now it's done so I can now hopefully start on the road to getting me feeling more human...I haven't been able to sew for months due to the situation with my vision...Hopefully, some day, I can get back in that saddle again..I have a long list of questions to ask, so we will see how it goes...(and am also armed with my symptoms list)...I have to believe that things will start to get better now...I will continue reading all the different post as many of them do help explain so many different things,,thanks again.....
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620923 tn?1452915648
COMMUNITY LEADER

  I just looked at them....ur puppies r cute.....and u r quite the sewer.....I miss having a dog....I know how they can comfort u and snuggle when u need it.....u r lucky to have them : )
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1962343 tn?1327958272
There are some pics for you to see on my photos that I thought you would get a kick out of....My little Boo is my biggest cheerleader when I am feeling my worst..I tried to humor myself today into believing I felt better than I did.... Guess we do that allot, huh??? As long as I can find something to laugh about thru all this, I will be o.k....lynda
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620923 tn?1452915648
COMMUNITY LEADER

  Amen : )
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1962343 tn?1327958272
I was able to find the poem by Dr. Oro and that is great...I remember when I first lost my hearing altogether for all practical purposes and intentions... that was July 16th of 1987...It took me from 83' till 87' to become completely deaf from the meniere's...My neuro-otologist at the time, Newton Coker was worried about my mental state as I was still hearing 3 days prior to that and then that Friday morning, I woke up and everything I knew up until that point was just gone....This was from the Meniere's and a toxic reaction to the streptomycin therapy I was being given for my vertigo....The psychologist that I saw was also hearing impaired...One of his first questions to me was and this had to be written out on a tty machine...How do you feel about what has happened emotionally??? my exact reply to that was "No one can teach or show you how to gracefully go deaf"...He did many siminars and asked my permission to use that phrase in some of them....The same thing goes for the cmi's and any other malady that has the potential to do you harm mentally or physically... None of us ask for the lot that we are given...It is how you go about taken care of them...I won't let one or a couple of non caring physicians bring me to my knees...I already have the cmi doing that...it's how I decide to rise above this and I will as life is too short and too precious to live it being miserable...This is such a caring group of individuals who have somehow banned together to try to make a difference.... The true caring that comes across is nothing short of amazing...With your help and whatever I can offer in return, we will all make this world a better place... lynda
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620923 tn?1452915648
COMMUNITY LEADER

  At the top  of the forum just above the post a comment button u will see ...about this forum; and important announcements....if u place ur cursor over Important announcements u will see it drop down, click on the title for the poem, here is the link in case u can not find it-

http://www.medhelp.org/posts/Chiari-Malformation/So-I-Say-poem-by-Dr-John-Oro-a-Dr-that-truly-understands/show/1136687

U may find the Ehlers-Danlos group a good place to check out too, we have some video links there and u will find them very informative.....

http://www.medhelp.org/forums/Ehlers-Danlos-Syndrome/show/417?controller=forums&action=show&id=417&camp=msc
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1962343 tn?1327958272
what do I need to click onto in order to find the poem by Dr. Oro??? I did just check out the multitude of symptoms for ehler's danlos and I truly will be asking my new doc about that as well..of the 41 symptoms that I found posted on the one site, I have 33 of them, so that is a little spooky in and of itself..the ehler's danlos was also mentioned on the Mystery Diagnosis episode that I mentioned...What symptoms I don't have, my sister does, so now am wondering if she could possibly have a cm1 as well...I have the MVP and she has the AAA...She too has allot of vision problems, horrific pain in her neck and back, just many of the same things I am experiencing....And no, in answer to your question, this was never mentioned to me..I have to go with my gut feeling on things like this, much like I did with the EPI dx that I was able to figure out myself on my little dog..I have to make sure I am o.k. as I do have to go to great lenghts to insure her health...She is who has been keeping me going these past 8 years and I promised her I would always be around to take care of her...I had actually recorded that paricular episode on M.D. and then a few days later, had a horrific migraine and guess during that time, I deleted it out by mistake...I again have to believe there is someone out there who can help me and will do everything I can to make sure it happens....thank you again... lynda
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER

....but has it worsened?....that is something u should keep close tabs on....were u ever checked for ehlers-danlos, it could be the root of ur all over pain as well....I have it and know all too well the pain u can get from it and lack of sleep as u can not get comfortable....

Once u r seen by a true chiari specialist u will see a huge difference...and if u haven't found it in ur reading, we call the lack of interest and the brush off by Drs " the royal chiari run around"...since  they send us from one dr to the next and we get no where....

I know u r frustrated bcuz the dr did not take ur chiari dx and ur pain into account or as seriously as u r or want them to....but, u know u have sleep apnea, so I encourage u to keep close tabs on it : )

Read the poem at the top of the forum by Dr Oro, u will see there is hope that there are Drs that understand.
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1962343 tn?1327958272
I can see where you have kind of been appointed as the mother hen of this group and that is an absolute compliment..Over the last couple of days, I have been reading one post after another trying to get a true handle on this thing...It wasn't just the sleep study thing that truly got to me with this particular doctor...It was more the fact that my visits with her were 2 months in between times....She never asked me if I was doing any better with the headaches and clearly I was NOT...As I had stated in a previous post, she was completely dismissive of the chiari 1 malformation even as I told her I was very concerned about it and the fact that it had last been seen on an mri that was done in 2002 and that I was worried as I knew things with these formations can clearly change over time and I would not be able to have an mri....I walk in her office using a cane as I have had to do for the last 3 years and she asked me why I was having to use it, even after stating to me that "you have a very uneven gait"...She knew I had the meniere's, that I had been diagnosed with both m.s. and fibromyalgia...She merely did the follow my finger test and told me to grip her fingers and that was it...Asked me how many fingers I was seeing and it was 2, when in fact it was just her index finger...I told her the headaches were unbearable at times... My blood pressure can easily shoot up to 196/120 when I have my worst headaches and on top of that, I am diabetic as well...I know that it was not an ill conceived request to have the sleep study done, but my primary concern was the pain, the weakness I am now feeling pretty much all over my body....Five years ago, I was probably in better shape than I was when I was in my 30's...Now, not so much...I would love to be able to get a normal nights sleep, but with all the pain from my neck, back legs and shoulders, that clearly is not going to happen..I have to believe in my own heart of hearts that there are other doctors that are clearly more understanding of what we go thru on a daily basis....I want to continue to find a reason each day to laugh, be happy and be the support for my best friend that I know she needs me to be....But she has seen just how far down I can get with this thing and says this scares her far more than her own cancer does.....Where do you go from there???My apnea has been diagnosed in 3 different sleep studies...I know it is there.... lynda
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620923 tn?1452915648
COMMUNITY LEADER

  Here is a link to the mom's original post about her DS and his death being covered on TV's Dr G medical examiner....

http://www.medhelp.org/posts/Chiari-Malformation/Chiari-Related-Death/show/1176509
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620923 tn?1452915648
COMMUNITY LEADER

Hi lynda...chiari and sleep apnea go hand in hand many times and to relook at it is not out of some ill conceived idea...and when u r having sleep issues is really something we all should do. Did they do a test to see if ur blood is oxygenated?....I had this done and it ruled out a need for the sleep study....

But as chiari symptoms worsen it is possible for sleep apnea issues to crop up as well.

We had a member write about her DS that had the chiari surgery and once home died as a result of undx'd sleep apnea...it is so sad to see this happen....

Topamax will affect u the first 2 weeks u r on it then u adjust...but I agree, I almost quit taking it at that point, but things leveled out....I am on a lower dosage then most, as I do not respond well to meds, and did not do well when we tried to up this dosage.

Neurontin or gabapentin same thing...was not good for me as it made my "IBS" issues worse and did nothing else for me....

We all will have a diff cocktail that will work for us....

The thing is, it is better to get tested for something and be safe...then to not do it and there be an issue.
Helpful - 0
1962343 tn?1327958272
i know from looking over the many previous posts that many of you out there have had sleep issues with your cmi dx...I will cut to the chase on this one..I know that a lack of sleep can cause you to have a multitude of problems and those innumerable..I am trying really hard to understand why my neurologist(which I will actually not be going back to see in lieu of seeing a new neurosurgeon in Abilene) why she would have felt it so important for me to have another sleep study done when I had only had one done in 2007..I do have mild sleep apnea and do not have to use cpap for that..My biggest problem with sleep is that when it does happen, at best, I sleep for a couple of hours at a time and then am awake for another two...only occassionally am I able to go back to sleep for any length of time...My sleep is irratic in my view point is because i wake up hurting either from my neck, back, leg spasms, back spasms or something of that nature..I cannot for the life of me understand how a sleep study would have helped explain any of that....This was where this doctor and I clearly were not seeing eye to eye and I again explained to her that it was the physical pain that was far more concerning to me than the lack of sleep...I wake up with headaches that I know can in some ways be attributed to a lack of sleep but I also have them when I am not sleeping and always, always they are in the back part of my head and then make me feel as though my eyes are being pulled out from the back...Then there are the sharp, electrical like pains in the eyeballs themselves.... My eye specialist who did both my cataract surgeries told me the remaining vision problems I am having now are all neuroogical in nature...Has anyone else had similar issue with the sleep deprivation thing, apnea and just things of that nature in general...I do take maxalt for the migraines and it does help to a small degree and was already taking a hefty dose of neurontin...(500 mgs. 3 times a day)..We had tried topamax and that med made me a blithering idiot, but am truly happy for the many people that it does help....
I cannot tell you enough how thankful I am for having found this site...I truly didn't understand it's workings at first, but did finally come to the realization that the "chat" available on this site will probably be one of the best things working for me and countless others as so many of you have been there, done that and can teach us newbies a few new tricks...I try to make light of any medical condition that I encounter as being deaf, it's been the best outlet for me and clearly, the best medicine....I have to believe that with each others help, we can all gain something truly invaluable from this site...thanks again... lynda
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1962343 tn?1327958272
This was my exact point to the last neuro I saw in Abilene..I honestly feel I know more about this subject at this point than she does...She kept telling me on and how how so many of these things I was experiencing are not chiari related.... Hello!!!! My meniere's did not cause my vision to take a complete left when even 1 1/2 years ago at this time, it was right at 20/20 in both eyes due to corrective cataract surgery..My brother (for the last year has) kept telling me how my depth perception was shot and that I had little if any peripheral vision... He was right and my eye specialist even wrote this particular doctor an email as I was sitting there seeing him because he was so concerned about what was going on...She had access to that email for over two months when I saw her the last time and had not even bothered to read it....The vision problems started to maifest themselves after a fall I had taken off my front porch...(busted my tailbone in the process and then started having truly horrific migraines, worse than I have ever had and I have had them since I was 14 and I am 60 now....The only two test she did do on me were the follow the finger things with your eyes which I failed miserably and then the grip thing... That was it.... While I was sitting there and her with her computer in her lap, I started to have some horrific leg and foot spasms.... She never said a word about it, but she could clearly see those body parts contorting in ways they were never intended..My foot doctor(God bless that man) had told me he had never seen any one person have spasms as bad as I have and I was also told that by a cardiologist...I was having some unexplained arrhytmia and had been hospitalized...At one point, the spasms were so bad even after being giving muscle relaxants to calm them down and clearly didn't work, that it took no less than 4 nurses and one other doctor to hold me down..My pulse rate from the pain alone was causing all these monitors to go off...She knew about that incident and Hello!!!! once again, it went in one ear and right out the other...The only reason I had seen her in the first place is that my old neuro doc had once again flown the coop... Moved his practice to San Angelo twice and hadn't bothered to notify his patients...I was not going thru following him a 3rd time.....Anyway, to cut to the chase, I made up my mind the last time I saw this last doc that I would not subject myself to that kind of treatment or lack therof, again!!!! Was not happening!!!! So, I did go on line, found some reputable docs at U.T. Southwestern.....The problem there being is that there is no way with the Meniere's and the chiari 1 malformation that I would risk other people's lives as well as my own trying to drive in that kind of traffic....Abilene is bad enough for me right now....I did find the two neurosurgeons in Abilene, called and talked to the nurse there, was able to look them up on line, knew where they had done their training and now will just have to hope for the best....My best friend since 6th grade lives in Granbury which is 1 1/2 hours from Dallas and she would get me there wiithout a doubt, but she is also in stage 4 colon cancer and I just feel she needs to be worrying more about herself than I know she already does about me....(and yes, friendships like that are hard to come by....thank god, she has a very supportive husband and family, but it is her cheerleader(me) that she depends on most to get her thru the emotional stuff!!!!!!)...I truly understand everything that you tried to explain to me...The fact that I can no longer have mri's is truly worriesome to me....I had a mild stroke back in the later part of 99' and it's hard to think now that if I have another one, how will anyone out there know how to help me??? I am waiting for that one doctors office to call me back with an appointment...The maxalt for now is helping a little bit with the migraines, but my insurance only allows me 12 tablets per month...the ondansetron is a med for nausea normally given fro chemo patients and I sometimes have to take it 4 times a day.... You do get nausea from meniere's or I do, but I can tell by now when this is different.... it's not an easy situation to be in , but also, hopefully isn't one that is impossible... thanks again, selma.. lynda
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER

  It is the obstruction to the CSF that is the problem...imagine the base of ur skull like a funnel....and ur herniation like shoe string licorice...no matter how long it is , if  it is thin it will not obstruct fluid from flowing thru the funnel...but, set an  upside down gumdrop in there and it corks it up....it is more the width not the length  that matters...and the Drs only give us the length.

My herniations were 4 and 6 mm's.....and I have a retroflexed odontoid...so over crowding to the max....

Drs that have no idea how chiari can affect us go by the old criteria of to be considered chiari it had to be a 5mm herniation, when chiari is a malformation of the skull not the herniation, it causes  the herniation ....so crazy.....

The problem with no MRI's is u could be forming a syrinx and not know it...that is one thing u want to avoid.....
Helpful - 0
1962343 tn?1327958272
this is where things get complicated...again, the last mri i was able to have done was in 2002...the displacement at "that" time was 5mm..i did have a recent c.t. scan that is pretty much unremarkable.... no disrupted flows noted...but...i honestly do not know or truly understand if c.t. scans alone can dictate what the size of these formations are..i have copies of my last mri in an envelope... put it up to a glass door and even the lay person that i am, i can see where that portion of my brain is below where it should be...i have the disc from all my other c.t. scans...mostly lubar spine and that sort of thing and i have large spurs in my neck, one pressing very close to my upper spinal cord and also 3 bulging disc....(train wreck waiting to happen, right? and i forgot to mention the hiatal hernia....was given actual pics of all of this stuff!!!!! weird!!! one of my best friends son's lives in pa and i have another friend there that lives in pittsburgville,pa., i think it is called...am a memeber of another group, ***** and have talked personally with the websites owner and she says sometimes people with even 3mm formations can have a multitude of symptoms.....i truly won't know what to expect till i see this new doc...i know though that my not being able to have mri's is not going to help any and know that these falls can enlarge from falls, accidents and that sort of thing and have had plenty of both just in the last 3 years alone.....
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620923 tn?1452915648
COMMUNITY LEADER

Hi...actually my DD lives in NY...I am in PA...the pics r from when I visit her.....I love it up there tho....I usually stay a week or 2 at a time.... : )

Many with chiari also have EDS, and those with EDS have hiatal hernias and GERD...so , I know all too well those issues unfortunately.....

And it may be true size of the hernitaion does not matter, it is how it is affecting u, symptom wise and if u have a CSF obstruction....how does the patient feel is what is important...and not to ignore the zebra in the room...the dang Drs keep looking for horses....ugh
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1962343 tn?1327958272
wow!!!!! i must have just met my kindred sister...I also have gerd, grade c esophagitis and r.r. barrett's...(i say r.r. because it relaps and remits)...just got put on dexilant and ondansetron...the "o" is great for nausea!.....i just found this forum a few days ago.....was not sure it was for actual chiari chat, but clearly, it is, so that is great..... wonderful always when you can maybe help someone and learn at the same time.... lynda
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1962343 tn?1327958272
just had a chance to check out your pics... your daughter is just amazing!!!! I know you have to be very proud of her..Most of what I have learned about chiari malformations, I have done online...Have tackled it the same way I tackled trying to find out what was wrong with my little chi and in the end, I was smarter than my vet on that one...$800.00 worth of test and I figured out she had Epi...(not usual for chi's but can happen and she is only 3.8 lbs...) My vet was very offended that I dared to second guess him, but he also saw after I got her back in shape again that I was right!!!!!! I went at one of my neurologist in Abilene with the same demeanor.... She tried to tell me that size does matter in Chiari's and yes, am certain that is true to a great degree, but for the people out there like me that are major symptomatic, when nothing else can be confirmed as the "culprit", I think it warrants listening a little more to what your patient is telling you...I was able to find 2 neursurgeons in Abilene that did practice at the very place that I was going to have to go in Dallas... Both are well educated on chiari 1 malformations...I have my arsenal of symptoms made out, questions, you name it.... Am not taking "no" for an answer this time....
at 60, I know this body better than anyone...I too have been diagnosed with fibromyalgia and m.s..... I honestly believe the majority of what is going on with me now is all related to the cm1....thanks so much for answering my post....I saw that you live in New York and have read that entire web page about the chiari institute.... back in early November, there was a program(mystery diagnosis) that featured a girl named marissa....I truly understand how disheartened her mother had become prior to her going there..I am deaf, but it seems sometimes that the people that hear the best don't know how to listen and that to me is just sad...I do have the cochlear implant and am able to hear one voice at a time and to me, that is great...i watch tv programs that are captioned...I will forever miss the sound of music, but thank god, I still have allot of memories in my head from when I could hear... the last song i heard was roger whittaker's version of "you are the wind beneath my wings'... not a bad way to go out at all... thank you.....
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620923 tn?1452915648
COMMUNITY LEADER

  I know, I do not eat many of those things as I also have GERD, so I stay away from soda's and caffeine....and chocolate and I do eat it just not often enuff to cause my issues......

  It is funny but I only drink root beer when I do drink soda bcuz it is caffeine free....all the tea I drink is also caffeine free....no coffee ever....

I will have my Dr take another look....
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1962343 tn?1327958272
just wanted to add a couple of little things...tinnitus can sometimes be aggravated by the things we both eat and drink....carbonated bevarages, things with caffeine in them, and yes, the c word....CHOCOLATE...sad, but true...the safest thing you might try to drink besides water or juices is actually rootbeer.... and yes, it does have carbonation, but most are free of caffeine..NO COFFEE UNLESS IT IS DECAF...just a thought...i have been living with meniere's since 1983 and chiari1 since 2000...i would take the meniere's over the chiari any say of the week!!!!!! i would also add that you still need to let your ent doc rule in or out the meniere's as you can clearly have BOTH......
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620923 tn?1452915648
COMMUNITY LEADER

  Thanks Lynda and please post an update on ur Dr visit and let us know  what u find out in regards to ur chiari....

   "selma"
Helpful - 0
1962343 tn?1327958272
Hi..I can see where there could be a crossover in the dx's between Meniere's and Chiari as I now know that I have both...My meniere's was never your run of the mill meniere's...(it was like the saying on the gift that keeps on giving only mine was TAKING)...It started out with the muffled, well like hearing, along with the tinnitus, but I had absolutely horrific events with vertigo and that sort of thing..To this day,I cannot even stand on a 4 foot step ladder...Imagine upchucking on your neurotologist in an elevator going up to the 18th floor of Smith Tower in Houston... That happened to me...Dr. Cocker is very well known and respected thruout the Neurology community as well as the leading Neuro-otologist... He has since retired...Meniere's generally only effects one ear primarilly, but can effect both ears, though the hearing in one ear is usually much more effected than the other one..That started out being the case with me, but in the end, i pretty much lost it all in both ears..My implant is in my left ear and I have less than 4% hearing in my right ear....Your clearly have more troubling symptoms with the chiari as it effects pretty much your entire body..that is not to say that faulty hearing, tinnitus can't make you feel bad all over as it can, but it is not the same kind of pain, or at least it has not been in my case....Due to my implant, I have not been able to have an mri since 2002 and it was in 2000 that my chiari was first diagnosed...Actually, I had seen this one program on the learning channel just days prior to that m.r.i. and had told my neighbor after seeing it, that I knew what my neurologist was going to tell me it was and I was absolutely right!!!!!!!!! didn't want to be, but I was..I have all the usual symptoms with the chiari and more and mine is only 5mm, or was at that point in time...I am due to see a neurosurgeon in Abilene texas that did his training at u.t. southwestern and he does specialize in chairi malformations..... Just allot of different things going on lately that has led me to believe that this thing has worsened and I do not want to get to the point of not being able to enjoy my life as at 60, you don't know how much you have ahead of you anyway.....and eng truly helps in diagnosing meniere's and there are just so many other new test out there as well that ccan help in that department...I would not wish this journey we are forced to take on anyone, but do know that there are some good people out there that can help....lynda













actuall
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620923 tn?1452915648
COMMUNITY LEADER

  Hi and welcome to the Chiari forum.

I know many with Chiari have been mis-dx'd with meniere's....I was considered to have it....then it was dropped when they found the chiari....I too have constant tinnitus that did go away for a brief time post op....

Thank you so much for sharing this info as we can never know too much about how and what may affect us in addition to our chiari.

  "selma"
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