Saw Dr. Gacek today!

Discussion in 'Your Living Room' started by carolanne, Aug 1, 2007.

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  1. Mya46

    Mya46 Knowledge is POWER!

    Sam - Thanks, i'm always educating the doctors. :D I'm the one who insisted on the HIgh Resolution Cat Scan because of noise/pressure induced vertigo and walla, found the SCD in ear (3rd window) and starting to deteriorate in right ear. :( Explains why the plane ride induced my vertigo so violently this past time. I can not stand constant loudness (voices/anything...), it makes me spin.

    BUT the viral thing was always in my self diagnosis as well. My PCP is awesome, she lets me try anything because she knows i'm very pro-active with this @#$#! I will try acloyvir next time in small doses. My sister in-law is a pharmacist and even recommended that also, she said sometimes smaller doses more frequently can be better alternative for some. My PCP chose the Valtrex because its faster acting and take less of it during day (easier).

    I'm sure Dr. Lee is well aware of Dr. Gacek since they reside in same medical facility. I'm very excited to share with him my findings and his feedback. Knowledge is Power and i don't take "just live with it" very lightly. These are some life altering symptoms that need to be put to rest! I do not want to be deaf in both ears down the road or do the surgery route so i'm determined.... ;)

    Mya
     
  2. Amethyst

    Amethyst She believed she could, so she did.

    Hi Sam - no ECoG is not designed to intentionally induce vertigo...perhaps you're thinking of the ENG/VNG? Here's a bit about the test....http://www.dizziness-and-balance.com/testing/ecog.html

    I'm still not sure which procedure is better for testing hydrops. I know the entire purpose of the ECoG is hydrops related so I'm confused as to why the two tests sound so similar. Yes the electrode hurt like heck when it touched up against my ear drum (due to the nerve endings I was told) but luckily the pain subsides very quickly. The clicking was also bothersome due to my severe hyperacusis...although I found it quite mellow in my left ear - sometimes hearing impairment isn't so bad ;). Not until the testing began in my right (good) ear did I realize just how loud and uncomfortable those darn clicks were!

    I'll keep trying to figure out the difference between these two tests - wonder if one is more reliable than the other?

    Amethyst
     
  3. Mya46

    Mya46 Knowledge is POWER!

    I went to the ECog site, by Dr. Haines and read it, it envolves electrodes on the ear drum (ouch!).

    The VEMP link is also from Dr. Haines site and reads that it's best to use electrodes in ear vs the earphones to get an accurate test!! So it looks to me like you can use either ear phones or electrodes but the major difference in the lifting of the head to monitor neck muscles. He states the best way is to lie down, not sit up as makes it very uncomforable for the patient and not apt to get as reliable reading. SOOOOOOO, wonder whats in store for me with my VEMP, electrodes or headphones?? Sitting up or lieing down, haaa! I tell ya, if they touch my bad ears eardrum i'll go through roof, it's soooooooo sensitive! :'(

    http://www.dizziness-and-balance.com/testing/vemp.html

    Mya
     
  4. carolanne

    carolanne Lily

    Mya-
    Maybe you can state your preference for the earphones? Dr. Rauch says it is pretty accurate and that's the only way he does it. Speak up for yourself - I know you will! Say no to induced dizziness and unnecessary pain! ;)
     
  5. SamC

    SamC Guest

    Amet, Yes you are right, I was thinking of the ENG/VNG test. Thanks for waking me up on that one...not something I should forget. LOL!

    Mya, Not sure why one is perferred over the other or why both would be used, could just be a doctor's personal preference. I have had both, perhaps to confirm nerve loss. It was explained to me how the computer can tell the difference between inferior and posterior vestibular nerve loss and how these nerves control our balance in different planes, but to explain it would take me a page and not make much sense. You have the right attitude, "knowledge is power." I hear, "who cares just make me well" and then these folks wonder why they don't get better.
     
  6. carolanne

    carolanne Lily

    I don't think refusing a test that causes undue pain or dizziness means we don't have the desire to do all we can to get well. Many tests that are given provide no real pathway to treatment, but just allow the doctor to follow his own questionable protocol. Before I refused the cold water in my ear, I asked the doctor if doing it would change anything or give him info that would cause him to change his mind about my treatment and he said no. So I said no to the test. His protege said it would tell them if I had any vestibular function in that ear in case I wanted to try a laby.... That's why I listened to the doc and not his protege.
     
  7. cheese

    cheese New Member

    I personally think "meniere's isn't meniere's" is wankery

    By that reckoning, Parkinson's shouldn't be known as parkinson's. It should be known as an idiopathic degenerative nervous system disorder. But who the farg is going to call it that?!

    Meniere's is what it is. Just because it is idiopathic, doesn't mean it shouldn't have a name. Diabetes is also idiopathic.

    The term has worldwide acceptance.

    There are worldwide symposiums on the disease named meniere's.

    And ftr Morbus is latin
     
  8. catinthehat

    catinthehat New Member

    What am I missing? I have four symptoms: vertigo with vomiting, fluctuating hearing loss, tinnitus and pressure in my ear. My doctor doesn't know what caused it, nor can he cure it. He calls it Meniere's disease. And just because one has chicken pox as a child, doesn't necessarily point to a virus being the cause in my mind. I mean, how many people haven't had chicken pox?

    Sam, are you saying no one has Meniere's disease?

    As far as using MM as an abbreviation, I don't call my doc's office and say I need to be seen for my MM, I don't fill out any hospital or clinic questionnaires saying I have MM, when people ask me why I can't hear out of my left ear, I don't say it's because I have MM. When I go to my doctor I call it Meniere's disease and he can abbreviate it in my chart any old way he chooses. Good grief. I think MM has been used since the beginning of this forum and I don't see everybody jumping on the bandwagon and suddenly start calling it MEDSE. MM works here, and what does it matter?
     
  9. sparrow

    sparrow Guest

    Wanted to explain my procedure. My neurotologist informed me that the ECOG was "The" gold standard test for Menieres. I wasn't able to take the VNG due to having to go off of Klonopin and some other meds. He was fine with that. He did say the reason he wanted the VNG was the VNG would inidicate if the dizziness was coming from my inner ear or my brain. If it was coming from my brain, he would discount Menieres and refer me to a neurologist. If it was inner ear related he would consider that the test was suggestive of Menieres.

    So, I had the ECOG test. The audiologist inserted one pad first into my right ear, very gently near my ear drum. She affixed several electrodes on my forehead over my eyebrows and on each temporal area, each side. She turned off the lights and I was to lay completely still for 20 minutes. She stood at a computer opposite me reading and monitoring my reading. The noise was like standing beside a jet engine, very uncomfortable. Then she did the repeated the same for my left ear. I barely heard any noise.

    As it came out, I have an abnormal ECOG for my left ear. The report stated "suggestive of endolympathic hydrops. My right ear was normal.

    By this time I had had several hearing tests and they were all different.

    My neurotologist refused to prescribe Valium, gave me no counseling on low salt diet, refused to prescribe me a diuretic and refused to answer any specific questions.

    He did, however, referred me on to a recommended neurologist and told me to come back after the neurologist did all she could for me. Then he would repeat all the tests again to see what progress the neurologist could do for me.

    I had 2 MRI's, 2 CatSCans, EEG's, Xrays, bloodwork and between these two doctors, the jury is still out and they have both have me for two years.

    My neurologist is convinced she can cure my dizziness by medication alone.

    She wanted to move all my medications around, medications I had been on for 20 years for my psychiatric side. Due to having very abnormal eeg's, she felt that I would be better benefited by going off of all my current meds and starting on her regime. But she wanted to discuss all this with my psychiatrist first. My next appointment, she said she was forwarding me off to my psychiatrist who was going to work with me on changing around some of my medications and to see her when I got all medications in place. Then she would redu the eeg to see if the electrical activity in my brain had calmed down.

    It's been a painfully slow process due to my sensitivity with meds. The neurologist wanted me to get up to adult levels of Lamictal within one month. It has taken me two months to get to what she wanted to start me on. I can only say that my mood has smoothed out, that is the only thing. If I go back to her with this, she will want to change my meds again and had planned to keep changing meds until she got the desired result, no more dizziness. I don't want this as I don't want my brain to be turned into mush with all those powerful drugs.

    Everyone is ignoring the ECOG test.

    I don't know what to do at this juncture.

    I am very slowly recognizing that there are no competient docs out there and I am soo frustrated with this whole process, I could scream. And it's scaring me.

    I am running out of financial recourses and will have to be forced back into the work place very soon.

    Ugh.

    Sparrow
     
  10. Goomeri Spinner

    Goomeri Spinner New Member

    G'day all :)

    I think I can answer your questions on the difference between the ECoG and the ENG/VNG and their relavence to a diagnosis. I have had both done a few times over the many eons ::) I have struggled with MM.

    And yes Sam :-* I'm lucky cause I know mine is really bilateral EH that is immune mediated by AIED, and now bilateral vestibulopathy etal :), but like Linda I just find the MM tag used in here much easier to type and use (and certainly less of a mouthful...LOL) and my docs also use the Dx Meniere's in my charts ::) (they wouldn't have a clue if I called it MM, that is just the .org name for it :)) But despite the actual cause, the symptoms and presentation and Dx are much the same and so are the treatments, to a degree.

    Anyway back to the tests.....The ECoG (and VEMP from what I have read...that one is too new for me to have had it :)) simply make the Dx of hydrops (all to do with differing action potentials and stuff like that, while the ENG/VNG tells how much vestibular function is present/lost.

    One should also remember that no test is infallible :eek: and there are false negatives and false positives for all of the above....just to muddy the waters a bit more ::)

    Amethyst :-* My first ECoG was done over 10 years ago and it was more common practice then to actualy insert the electrode through the eardrum and rest it on the round window :eek: :eek: They deadened the eardrum with some phenol and the oto inserted the electrode. After the brief sting from the phenol, I didn't feel anything but those bloody clicks in my "good" ear were deafening...LOL...I actually went to sleep when they did the deaf ear ::) He told me I had hydrops in both ears but at that time it was worse in my GOOD ear. He also told me that it is not unusual to get a false negative....how long after the ESD did you have it done? That may have affected the results even though you were having symptoms again.

    The inner ear is divided into the cochlear, the vestibule(saccule and uticle) and the semi circular canals and theoretically ??? I suppose it is possible to have "more hydrops" in one section than the other at any given time ??? The electrode is reading information given it from the round window, that is closet to the cochlear, maybe your hydrops was worse at the time in the semi-circular canals....I'm just rambling here and letting what comes from the resesses of my mind aooear on the page ;D ;D but who knows...most bloody docs don't, that's for sure ::) ;D

    Mya, good luck with the VEMP testing...it doesn't sound too bad at all, at least its not invasive and doesn't cause any spinning ::)

    Carolanne I too refused the last request for an ENG water torture....I have had 3 previous ones all confirming my MM Dx and it wasn't gonna change anything in the treatment and even though when you have vestibular nerve damage it don't make you spin as much, that isn't the case with me.......well we won't know for sure cause I never finished the water torture part of last one...LOL...my vertigo ALWAYS induced upchucking on the 3th-4th rotation so we never got any further than that...LOL...hard to do when you can't keep your head still...anyway the doc said that the test apart from the caloric part told him all he needed to know ???

    Hope that help ya all :)

    Maggie
     
  11. Amethyst

    Amethyst She believed she could, so she did.

    Thanks Maggie - that helps a lot.

    My ESD surgery was in February - my ECoG testing was this past month. I suppose it makes sense that the sac is still decompressed, like the technician said, but what I'm struggling with is understanding where all the pressure is coming from. I think you could be on to something when you said that perhaps the hydrops was more concentrated in another area of the ear. Also, during this testing the patient is not to take diuretics etc. but my doctor caught me off guard when he ordered the testing. I was given no notice at all - I tried offering to return at a later date in order to properly remove myself from the diuretic and Serc but he said it would be ok. I do wonder if I had a false negative for that reason.

    Thanks very much for you help - that gives me a few ideas to chew on.

    Amethyst
     
  12. sparrow

    sparrow Guest

    The ECOG's conducted today are just a little pad that they put near your eardrum. Most audiologists won't insert the metal prongs into the eardrum due to infection and other issues. According to my audiologist, that is no longer done this way.

    Sparrow
     
  13. SamC

    SamC Guest

    Amyt. I see in your signature you tested + for fistula. I assume you mean, PLF. If this is the case then this explains your symptoms and NO hydrops.....PLF requires weeks or months of bedrest and possible surgery. Get the fistula healed and you may feel really good, but will always have to exercise precaution. I am on PLF alert after my fall off a stool. I have to observe basic rules of PLF, no bending over, sleeping with upper body at 30-45 degrees and on back. No heavy lifting or work, watching weight, never put anything in my ears, and never blow nose or anything putting pressure on the ears. Study up on PLF, I know several folks that have it and some successful, some not yet, and I will tell them about you if you wish. They are not on this forum, so I will PM you their email if they agree...Sam
     
  14. Amethyst

    Amethyst She believed she could, so she did.

    Good observation Sam.

    Here's what what I've been told: During my initial consultation with my neurotologist I explained that I believed I had/have Tullio's. Certain frequencies and loud noises like sirens, dot-matrix printers, babies crying, etc. cause rotational vertigo. I'm immediately unable to speak coherently, become extremely nauseas, and start losing consciousness. It's caused me a great deal of problems. At the same time I explained that I seemed to have the pressure sensitivity associated with the Tullio's - prior to surgery, if I put my finger in my ear or blew my nose then my eyes felt like they darted off to the right (left ear affected). My doctor was stunned to say the least and I believe he thought I was having him on. He attached the goggles, feeding the signal into a nearby monitor and he and my partner then had a great 'ol time puffing air into my ear and watching my eyes dance. The report read "a mild but significant conjugate deviation of the eyes to the right". A CT scan was ordered to look for SCD and none was found. According to my doctor, no PLF was found on the CT scan either. Having heard that CT scans are often not detailed enough I kept asking if I they could absolutely conclude that I do not have a PLF. In response I was told that it was 'highly' unlikely that I have a PLF and that he did not recommend exploratory surgery - I believe the conclusion was based on the fact that there doesn't seem to have been any mitigating trauma. My ENT once went on to explain that if I do have a small tear or hole it's likely in the round or oval window and exploratory surgery is rarely successful at patching the hole. I was told by both my neurotologist and my ENT that I may simply have Tullio's and pressure sensitivity due solely to meniere's - that a positive fistula test may or may not mean I have an actual PLF. No one seems to be able to tell me how meniere's by itself can cause Tullio's (just that it is what it is).

    Since having ESD surgery in February it seems I may no longer have a positive fistula test although I do still have pressure sensitivity - if my hearing aid's ventilation chamber is closed, or I wear protective headsets/ear plugs, I become dizzy quickly but not full out vertigo. My doctor performed a quick fistula test last month without the goggles and felt the fistula test was now negative. I believe however, if they attached me to a monitor again they would find that a very slight reaction is still present. Somehow the ESD surgery changed things - could it be the packing?

    I have been off work for a little over a year now. Yes bedrest does seem to help and the more I exercise the dizzier I get. I've never had a typical meniere's dx either - it's referred to officially as Cochlear Hydrops although I do suffer from occassional vertigo attack nowadays. Whatever I have seems to be taking away my hearing quite quickly (moved from perfect hearing to a 70dB loss in the first 6 mths - now the second ear is starting to show some hearing loss as well).

    So I have no clue what I have. Often I think the best thing I could do is get some money together and get myself down to the States for further testing.

    Thank you for your comments - I really appreciate any insights. I'd love to figure out what I actually have. Nothing about it seems typical.

    Amethyst
     
  15. LisaB

    LisaB New Member

    Amethyst, I do love the Michigan Ear Institute where I go....I feel I've gotten great treatment but there are so many good places in the states. While in hospital the nurses were telling me how people come from all over to get treated there. Lisa
     
  16. Amethyst

    Amethyst She believed she could, so she did.

    Thanks Lisa. I'd really love to research and plan a trip to the States in the fairly near future to see if other doctors might be able to figure this one out a little more. My only concern is if they do find a PLF I could never afford paying for the surgery. But then again, maybe if I came home with a well recognized doctor's recommendation my doctors would be able to follow through on the findings. I'd sure love to give it a try. As for who I'd go and see - I think someone who does a lot of research with Tullio's and PLF would be ideal.

    Around here I've run into a number of problems - I've been told no to anti-virals, steroids, a possible allergy connection, and NUCCA (not all in one appt. of course ;))
     
  17. sparrow

    sparrow Guest

    Thanks Sam for your response to my Epstein Bar Virus dilemna. I will be seeing my primary in September, if not before then, when she gets her report from the Johns Hopkins' immunologist. Will bring it up to her again about the Valtrex. She refused prescribing it to me in the past and may again in the future. Am taking Lysine from Vitamin Shoppe for now, guess it can't hurt.

    Everyone has their opinions. Most doctors are sticking to what is published. My former immunologist was dabbling in speculation only and hanging his hat on that, only to find out when I asked him to put it all in writing he wouldn't.... go figure.

    Sparrow :D
     
  18. jewels

    jewels New Member

    Finally Success!
    I emailed Dr. Gacek and he replied posting his protocol for the acyclovir. I took the email to my GP along with a synopsis of Dr. Gacek's book; a picture and bio of Dr. Gacek; a listing of the American Otological Society's Presidents showing his name as president in 1989; a copy of the Japanese study and some postings from this site about acyclovir. (all of these things I found on the internet). My GP listened, asked if she could keep the info to read and did the protocol as recommended by Dr. Gacek.
    I am doing quite well and am very thankful!
     
  19. carolanne

    carolanne Lily

    Jewels, Congratulations!

    You say you are doing quite well.... when did you start the acyclovir? Dr. Gacek put me on Valtrex 5 days ago and so far nothing....
     
  20. Mya46

    Mya46 Knowledge is POWER!

    Amethyst -

    Was your Cat Scan a High Resolution Cat Scan with specific cuts? It has to be a HIGH RESOLUTION to find SCD and Tullio. I've done a ton of research and if they don't do it to the correct mm they will not see anything. I had one after too, complaining of noise/pressure and exercise induced vertigo. This guy did the High Resolution and the radiologist saw SCD as did the neurotologist when he viewed cd. There is more too on the report about a tear in my tegmen (?) and possible scd on right side but not fully formed yet! So, i'm going for second opinion to another doc who resides with Dr. Gacek, hopefully for some more answers. He too has emailed me personally which I find wonderful. He is very interested in my case. This last guy just said, more diuretics, see you in 6months! I tried my best to pull stuff out of him (and i'm verrrrrry good at that, i'm the one who suggested Tullio!) and he did'nt want to talk. HMMMMMMM?

    I too feel i'm not an a-typical Menieres candiate, never did. I've always had different symptoms and just didn't feel right with that vague diagnosis. Something is causing this, I want to know WHAT?

    I wish the best and hopefully you can get to the states! And I have to say your flower icon is so eye catching, its gorgeous. Fits your personality too, very nice person and learning all you can about this @#$#@.

    Mya
     

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