Saw Dr. Gacek today!

Thank you, thank you, and thank you ... Yes, I have heard good things about Dr. Lee...

Linda, I say this with respect and only because I want folks to know the facts ... MD also is used for Meniere's disease. MEDSE is special for Meniere's disease, but never really caught on. MM is used mainly for Malignant Melanoma, but also for about 50 other medical disorders, diseases, and terms.

Morbus Meniere's is NOT latin. Morbus is German from Latin and Meniere's is French. The French doctors honoring Dr. Meniere for his work called the triad of symptoms described by him, "La maladie de Meniere" or in English Meniere's disease. German doctors were first to call the work of Dr. Meniere, "Morbus Meniere." The meaning of Morbus is, "a disease of its own kind." In other words not really a disease, but until Endolymphatic hydrops was understood (1932 or thereabouts), it was the best way to describe these hydrops symptoms.

So how does mm come in? It is an internet invention to establish Meniere's as something special and mysterious. Medical professionals do not use this abbreviation on any kind of record. Now Muscular dystrophy is not as common as Malignant Melanoma and more folks over the years on this forum have had a diagnosis of mm for cancer than folks with MD for muscular Dystrophy. I have mm on my records for a skin cancer removed successfully. I think if on this forum you type MD for Meniere's disease, it would not be confused with Jerry Lewis's MD. Could be confused with MD for medical doctor, but if one reads the context it would all make since.

What difference does it make? Not any to most folks, but does to one having mm cancer or one trying to approach their vestibular problems with accuracy.

 

Sam ~ What is VEMP?

Deleted portions of this post. It was most inappropriate of me to comment like this, I obviously am having a bad day and it's not like me to have such a discussion. I am still riled about Nassman's last thread that got everyone upset. My apologies to Sam (((hugs))). I do find your post here most informative, as earlier stated.

Please forgive me?

Sparrow

 

bump

 

Sparrow, Nothing to forgive! You expressed your feeling and I understand. My way of helping folks sometimes offends others. Now Sparrow I have been on and off here since Feb. 2003 and posted several 1000 times. I have not always conducted myself in a conducive manner. I have not always been right about everything, but I have learned from those errors. Many times my opinions may come across as fact as they may be fact to me. As Rick said, "If it works to your betterment, then do it." I have an electrical device I use to regain my balance. Those I suggested it to mocked me badly. I showed it to my Neuro-otologist and he wasn't impressed as NO known science explains how it can work, but it does for me. He said, "If it works for you do it." However it showed not signs of being worth being tested. So if using mm makes you feel better, do it. I may find it wrong and in my opinion holding back advancments in vestibular medicine, but many here have given up on traditional medicine.

I understand you being upset with Nassman. He is one of my past enemies. I find some things he says of validity, however his personal experience on vestibular matters is somewhat lacking and tends to parrot information that may or may not be correct. Getting upset over a post does you no good and time will reveal what is "truth" for you, maybe not fact but truth.

VEMP is the test where a earphone is put in one ear and electrodes on selected head nerves and a clicking sound is inducted while you sit quietly. A computer records the responses of your nerves, indicating whether hydrops is affecting them or not. It is amazing accurate. Now some that don't understand hydrops, nerve function, and electronics may disagree.

Years ago I had a bitter enemy on this forum. She just ripped me a new one on every occassion and was a very educated person. One day she dissappeared off the forum as I did. I received an email from her apologizing for her wrongs. She admitted I was right about the viral issue and she was wrong. I told her no apology necessary ... her finding a better life was what my post were about. I wasn't trying to be right and prove her wrong, just trying to get folks to understand all that is involved in understanding virus and vestibular disorder.

Once you break out of the box of Meniere's disease and incorrectness even as trival as mm, you start to open your mind to modern vestibular discovery. Folks cry why isn't research being done, well it is everyday, but most Meniere's folks refuse to open their minds to it. It may go contrary to their doctor and Meniere's friends.

Do you understand why I hate mm? It is on my record as skin cancer ... I had mm and it wasn't Meniere's. Lucky it was found in time. It took 2 surgeries to get it all and it was painful. It would have killed me in time. When I see mm, this is what I think of, not symptoms of hydrops.

Now Sparrow you seem like a really nice person and I didn't answer your post as I knew my response would not be nice, but this morning I was prepared to answer in a kind way. I guess I am learning in my old age. Thanks and I hope something I say may help you as no harm is ever intended. My hat's off to Larry, Johnny, and the others who have kept the viral issue alive here and helped many. Now remember not everyones vestibular problems are from virus, trauma is a big cause, maybe the biggest and then other diseases. The best to you Sparrow and I look forward to your post and hope something I say might help you in your search for a better control. Sam

 

SamC-

To add to your description of the VEMP test, an electrode is also put on a muscle at the side of your neck. You must then turn your head to the right or left, depending on which ear they are currently testing, in an uncomfortable and sometimes cramping position, so that this particular neck muscle is held extended and tight during the test.

Carol

 

Thanks Caroline, Yes now I remember the neckache it gives me and also they darken the room. I try to forget about test, especially the nerve conduction test for MS. The lady before me came out crying ... I should have run. I was actually crazy enough to have this MS test done twice. Never again. I had rather go in the rotary chair. Thanks to you for this great topic. Tell Dr. Gacek I have his book (recommended by Dr. F. Owen Black, Portland, Or) and now my PCP has her own copy also. Also tell him I am still taking an online medical course in basic Neurology to help me understand his book a little better. Here is some links I found from the one you provided. Thanks, Sam

http://www.umassmemorial.org/ummhc/hospitals/med_center/find/spec/details.cfm?temp=M1967M04

http://www.premiermedicalgrp.com/physicians/ent/mgacek.htm

copy this page and see if Dr. Richard Gacek knows this guy...

http://www.legacyhealth.org/body.cfm?id=500

Hey a little book preview.....

http://content.karger.com/ProdukteDB/produkte.asp?Aktion=ShowPDF&ProduktNr=227205&ArtikelNr=59260

and more...

http://www.annals.com/abs/annals948.htm

 

Why do they torture us so much?? You are a wealth of info Sam! I will keep every posted on my Valtrex regimen. 3 days in and counting...

Carol

 

Carol and Sam -

Can either of you tell me how the VEMP test differs from the ECoG? I recently had an ECoG performed to try and confirm if I've gone bilateral (low-tone SNHL has begun). They placed an electrode into my ear, next to the ear drum (ouch!) and I lay in a darkened room on one side then another, with clicks running in my ear for approx. 1hr per side.

What really surprised me is that neither ear showed hydrops at this time. It was much to my surprise as, although I have never been through any hydrops testing before, I was told that I definitely have/had it due to the presence of Tullio's, and a positive fistula test (my neurotologist felt this proved hydrops conclusively). I've had enormous amounts of pressure in my ear and was operated on Feb 2007 - Endolymphatic Sac Decomp. with Shunt. After the surgery I enjoyed a small window of good health. Soon afterwards the pressure started building up again and now I'm pretty much back to my pre-surgery state. I can understand why my other ear might not show hydrops since my symptoms fluctuate in it (tinnitus, pressure, hearing loss) - the technician only stated that hydrops were not 'currently' present.

So, what I'm trying to figure out is why would the ECoG show no hydrops in an ear that has been dx'd and in which I feel extreme constant pressure that I'm unable to clear?
Any ideas? I'd sure love to hear any opinions.

Amethyst

 

Thanks Sam for your very eloquent reply to my tart post and forgiving me (((hugs))) I received pm's from some members here correcting me about my opinion and praising you for your knowledge and how much you have helped them. <-- wanted to share that with you. You are highly thought of here

Looking forward to hearing more about your opinions about the virus connection. I wanted to share with you my frustrations over this viral issue. I had Mono at age 16 and of course the Epstein Bar Virus is now with me forever. Last Spring I felt as if I was having symptoms of Mono again and after a blood test, the test revealed high levels of EBV Antigens. Primary said I had a reactivation of Mono and bedrest was in order. Immunologist told me that I now have chronic EBV and it will advance to lymphoma within a year. Infectious Disease doc told me there is no such thing as chronic EBV, it has not been re-activated and he has seen others with much higher EBV levels than I and they felt fine. He also said there was nothing published nor proven that there is such a thing as chronic EBV and he had never heard of a connection between EBV and lymphoma. He further expanded that 90% of the population has been exposed to the EBV virus/have it and it's no big deal. Saw an immunologist at Johns Hopkins last week and he agreed with the Infectious Disease Doc. I then protested about my chronic fatigue that I have suffered with since I had Mono at age 16. He only shrugged and said there is nothing proven that EBV causes chronic fatigue.

However, they all agreed that EBV is a cousin to the Herpes Virus and is basically all the same thing. I asked to be put on Valtrex and all docs, including my primary have refused to give me this drug, shrugging that it is a virus and the drug would not do me any good. I asked about Lysine and they all just shrugged again saying it has never been proven nor published.

All my docs are sticking to this comment "unless it's been published, it doesn't exist".

Thanks for listening to my frustrations with the medical community over these issues.

Sparrow

 

OK, i'm going for VEMP the day of my visit with Dr. Lee. Please elaborate on the question between ECOG and VEMP test?? I have not done any of those barbaric tests but I want to do this one to clear up if I have Hydrops or just the SCSD/Tuillo. I'm not looking forward to an electrode in my bad ear! :-\

Thanks!

Mya

 

Mya, for the VEMP they don't put anything IN your ear, just earphones over your ears. They deliver loud clicking noises into the headphones that get louder as the test goes on. But nothing in the ear and it is not designed to cause any dizziness (like the ENG). I don't know anything about the other test you mentioned.

 

.....

 

where is this doc located

 

Click on the first link in SamC's post below.

He is in Worcester, MA at the UMass Medical Center.

 

Sam - I once read where Morbus is German. Then I read somewhere that it is Latin. I can't find that article. But it doesn't really matter. We've been through all this before. As I said, most of us use MM because it's easy to remember and type. I'm not referring to what doctors or anyone else uses, just what is easy for us on this site.

 

OOOPS, I sent the above post too fast, it's for Carols response to my previous post. THANKS for making me feel better about the VEMP. An electrode on my eardrum would kill my left ear, I can't even let an earplug touch the inside of it at times.

Mya

 

Mya, My mistake -- I should have said ON not IN. Sorry about that. Nothing painful about the VEMP.

Linda, Thanks and yes neither one of us will ever concede and that is good. I like folks to know what's behind things. Some doctors get offended if you refer to md as mm. I think it best folks know the whole history and then can use mm here as it is a forum standard. I hope you understand my reasons for refusing to use it or honor it as a correct abbreviation. Yes, the German is derived from Latin. My point is most of us are English speaking and Meniere's disease is French/English. Anyway enough said on that.

Amey, As already said the ECoG induces vertigo intentionally and the VEMP is a nice rest time. Some folks are bothered by the clicking. I just imagine I am on an old time train and the clicking is the sound of the wheels carrying me out of vestibular city to a perfect place where I feel great and life is perfect. Oh yes, lots of chocolate.

Sparrow, Yes I know sort of how you feel. I was lucky to have a great Neuro-otologist and other doctors with open minds. Many doctors do want to see something published, and I do my research and find it, then have it ready for them. Example: the book by Dr. Gacek ... best $100 I ever spent or an article by a Neurologist about "white matter" and the Zoster virus connection. Sure good to have friends ... one can never have too many. Finding a good team of doctors is tough. They all worry about getting sued, about getting paid, and about what other more educated doctors think of them. The problem with buying medical papers and books is they are very expensive. There is several papers I still want, but the price is a little steep. The other problem is you can't copy and publish them here or anywhere, only refer to them which doesn't impress many. Too bad your doctors can't agree. As my PCP says, so little is really understood about virus. We know how to arrest it, but not kill it. We know it can cause other serious illness and death in some cases. Sometimes it cannot be detected, only suspected and therein lies the problem. Whether your Barr EP will progress into worse problems cannot be proven, but it has in many cases, so why take a chance? I would want to be on a daily anti-viral regimen for life and if one desires use Lysine. I prefer natural sources for Lysine as my experiences with the processed pills weren't good. I had better results with Olive leaf, but it was still so little it wasn't worth the expense. The acyclovir/Valtrex regimen is the only thing that has worked to arrest the virus ... now remember it didn't help my vestibular symptoms, just stop cold sores, none in almost 5 years, no more bad serious allergies I had for 35 years, and MRI shows no more nerve damage and white matter stablized. Acyclovir/Valtrex saved my life. The virus had every intention of killing me.

If you have suffered since age 16, I would say that is proof enough for any doctor. Maybe someone on this forum lives near you and has a doctor that understands virus. I am in Oregon... Sam

 

Sam - Question...i've had 2 MRI's done with and without contrast. Both ordered by different ENT's. Neither report mentions nerve damage or white matter. So my question is, do they have to specifically order the MRI in "suspect" of nerve damage and white matter? Or do both show up on the standard MRI of head? If mine show no indication of either, does that mean no virus connection? I've had cold sores on lips all my life, real bad as kid and yes, chick pox too. If a cold sore starts on lip and i take one 500mg Valtrex, it's gone ( i rarely get them now, immunse system pretty healthy). I tried 1000mgs of Valtrex a day for 2 weeks and side effects killed me (when i was in daily vertigo mode 2 months ago). The back of my legs and back were killing me, was so weird. I stopped, very uncomfortable. My Lyme titer shows up positive but the bars of Western Blot are blank. So docs say just signs of previous virus in system? What virus, as i've come to understand this test can show results of many viruses.

So many questions and i'm bringing them all to Dr. Lee and hope he takes time to answer them.

 

Mya, No the MRI is to find if there is any nerve damage, tumors, etc. Current MRI's cannot show virus in the inner ear. The vestibular nerve branches are somewhat vague and sometimes cannot be seen.

You have a viral history, no question. The good news is without the nerve damage, you may be lucky like Larry, Johnny, or my wife and have relief of all symptoms. This is something we will have to wait to see. My opinion is you should take 6 weeks of Valtrex at 1000mg TID or 3x daily. Then go on a lifetime dose of 500mg BID or 2x daily or if finances look as sparce as mine, then acyclovir at 400mg BID.

I know most of our successful viral folks here don't use the lifetime dose, but I am a hardcore advocate of it. In my case it is a necessity, in my wife's case maybe not, but our PCP (converted by Dr. Gacek's book) says better safe than sorry. I repeat my lame comparision ... like a computer firewall blocking virus ... take it down and maybe everything is fine until one day ... and then you have a mess to clean up.

Virus is different in that the anti-viral does make it go into recession, then will keep it there as long as it is present. If you wait until symptoms return to take it again, then you stand a chance of nerve damage. It is a gamble and a decision you have to make and get your PCP to agree to. My Neuro-otologist wrote my PCP a letter citing Dr. Gacek and that all helped make my anti-viral need less stressful.

I hope Dr. Lee can help you. Keep us informed what he says. Maybe acyclovir would not have the side effects and also use a smaller dose ... 400mg 2 x daily...

My idea is to educate yourself on virus, then educated your doctor and present them with Dr. Gacek's book. Challenge them to break out of the coffin and join the living.... Sam