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Old 03-06-2003, 05:06 PM   #1
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Post Semicircular Canal Dehiscence and PET

Many years,many doctors and no real answers for hearing loss,ear fullness,autophony(hearing as if a bucket was placed over my head) tired,sensitive to loud noises,some relief by lying down and others.I was treated for Mineres,hydrops,allergies and on and on.
I was told last year by 3 different physicians that I had Patulous Eustachian Tube and was treated with a variety of meds none of them worked.Oct 2002 I went to Johns Hopkins in Baltimore and after the normal examination I was sent for a special cat scan and found out I had Semicircular Canal Dehiscence and was also told I was the first person to have it and the symptoms of Patulous eustachian tube.
SSCD was only discovered a few years ago by Dr. Lloyd Minor at J Hopkins,the canal is part of the inner ear and it develops an opening.Besides the symptoms I have mentioned ,they can be spinning sensation,vertigo,abnormal motion of visual fields because of loud noise and others.
Because this is a new finding many people like myself have gone many years with no answers.I had cat scans in the past that did not show a problem,SSCD requires a specific cat scan and a trained radiologist.Even after it was discovered my previous physician looked at a 6 month old cat scan and could not see it,so it is important to have the proper scan and additional tests.I placed a post like this a few moths ago on another site and was amazing how many people responded and have finally found some answers after doing research and testing.I am just a patient so I can only hope this explanation will be helpful.
If you go to the Johns Hopkins web site and search Semicircular Canal Dehiscence there is information available.
Dr.Lloyd Minor and Dr. John Carey at Hopkins perform the surgery as does Dr. Dennis Poe in Boston.
If you email efullen1@jhmi that is Johns Hopkins email for this specific problem and they will set up testing.
I have not had the surgery but will this summer,but I have spoken to 4 of the 18 I believe patients that had the surgery and it was a success.
If I can help in anyway email me rckbjk@msn.com I am not sure my email address is available through healthboars as this is my first post I just found it.

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Old 03-07-2003, 06:12 AM   #2
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A fascinating read Richard, Thank You.


Keep us posted.

Do you think your medical insurance will cover the surgery since it's sounds pretty "cutting edge"...pardon the unintended pun!

 
Old 03-07-2003, 04:39 PM   #3
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Health Insurance,I have not heard from anyone so far that has had any problem being covered.The facts are there once the Cat Scan and other tests are done so it would be difficult for insurance companies to dispute.
Two people I am in contact with are from Canada and one from Australia,Johns Hopkins has an international office and they were trying to hav the surgery at Hopkins and be covered.
One important point EVERYONE that finally found out they had SSCD was told they had Patulous Eustachian Tube at one point,they and myself were also treated for other things but the most common was PET.
This in no way means if you have a good ENT that is very familiar with PET and he says you have it he could be correct,however ENT'S seem to rely on the symptoms rather than proper exams and testing.Dr. Poe in Boston is the leading expert on Pet,I went to see him after 3 doctors told me I had it and was being treated for it.Dr. Poe's exam included video taping the eustachian tube while he had me say different words and sounds,then he printed off photos of the Eustachian tube opening and placed them next to a Patulous one and even I could see I did not have PET.My point is because PET is so rare some doc's just rely on the symptoms so be careful.

 
Old 07-27-2004, 12:20 AM   #4
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Re: Semicircular Canal Dehiscence and PET

[QUOTE=richardk]

ear fullness,autophony(hearing as if a bucket was placed over my head) tired,sensitive to loud noises,
treated forallergies and on and on.
found out I had Semicircular Canal Dehiscence and was also told I was the first person to have it and the symptoms of Patulous eustachian tube.
SSCD was only discovered a few years ago by Dr. Lloyd Minor at J Hopkins,the canal is part of the inner ear and it develops an opening.Besides the symptoms I have mentioned ,they can be spinning sensation,vertigo,abnormal motion of visual fields because of loud noise and others.
SSCD requires a specific cat scan and a trained radiologist.

Hi-- your post is old so not sure you will see this but just copied the things from your post that matched my symptoms but was amazed to hear someone use the same exact description that I have for years-- "a bucket over my head"--the other thing in your post that caught my attention that is similar is the vertigo or spinning sensation-- I have not seen anyone complain of that yet in the PET posts that I am reading and the ENT said it was not a symptom commonly seen in PET. I figured it was related just because of the ear fullness and the relation of the ear to balance but after reading your post I will check out the SSCD and see if that might be what is going on. It sounds like I need to look at John Hopkins because it is hard to even find an ENT that knows about PET. What about this specific cat scan that you are talking about--how is it different than a regular scan. Thanks

 
Old 07-27-2004, 05:45 AM   #5
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Re: Semicircular Canal Dehiscence and PET

hi pet peeve,
i dont know if richard comes anymore to the boards but the scan is a high resolution scan that looks for this problem, i had it at hopkins in feb and it was negative. you can call hopkins and ask for the name of the scan, and have it done locally i think or they should be able to assist as to where to go.
lib

 
Old 07-29-2004, 05:38 PM   #6
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Re: Semicircular Canal Dehiscence and PET

Quote:
Originally Posted by lib
hi pet peeve,
i dont know if richard comes anymore to the boards but the scan is a high resolution scan that looks for this problem, i had it at hopkins in feb and it was negative. you can call hopkins and ask for the name of the scan, and have it done locally i think or they should be able to assist as to where to go.
lib
Thanks for info on scan--more homework to do. May have to plan a vacation around Boston and Poe--the Ear Institute web site had some links to nearby hotels and I found a great little bread and breakfast that is only about .2 miles away from where he is. How long did you wait to see him for initial visit and how long was your wait before surgery was scheduled? Someone was from the Virginia Beach area--I don't know if that was SCP or you but sounds like you are both east coast where all the good facilities are. I did a search on top hospitals and Johns Hopkins was number 1 and the Boston Institute was number 3. Not bad. Nothing even listed in my area and LA wasn't that high on list but at least it was listed. I would just like to find a good local ENT. I have two that missed the diagnosis completely and the two others that got the same diagnosis. One said no treatment and I should just talk to a counselor and learn to live with it--and the other tried a few things and said there were no other options. None of them had any information about a support group even though I asked and none of them were aware of the drug study program being done. I can understand not knowing much about the disorder on my first visit if I was the first patient they had encountered but that wasn't the case. I at least expected some homework to be done before I came in for follow up visits. I will just keeping looking. Not much they can do locally at this point anyway but if I am going in for a checkup and have a question I don't want to be the one explaining what is available and where it is located. Have you ever been told that you are more prone to ear infections because of the open ET?

 
Old 07-29-2004, 06:00 PM   #7
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Re: Semicircular Canal Dehiscence and PET

Quote:
Originally Posted by petpeeve
Thanks for info on scan--more homework to do. May have to plan a vacation around Boston and Poe--the Ear Institute web site had some links to nearby hotels and I found a great little bread and breakfast that is only about .2 miles away from where he is. How long did you wait to see him for initial visit and how long was your wait before surgery was scheduled? Someone was from the Virginia Beach area--I don't know if that was SCP or you but sounds like you are both east coast where all the good facilities are. I did a search on top hospitals and Johns Hopkins was number 1 and the Boston Institute was number 3. Not bad. Nothing even listed in my area and LA wasn't that high on list but at least it was listed. I would just like to find a good local ENT. I have two that missed the diagnosis completely and the two others that got the same diagnosis. One said no treatment and I should just talk to a counselor and learn to live with it--and the other tried a few things and said there were no other options. None of them had any information about a support group even though I asked and none of them were aware of the drug study program being done. I can understand not knowing much about the disorder on my first visit if I was the first patient they had encountered but that wasn't the case. I at least expected some homework to be done before I came in for follow up visits. I will just keeping looking. Not much they can do locally at this point anyway but if I am going in for a checkup and have a question I don't want to be the one explaining what is available and where it is located. Have you ever been told that you are more prone to ear infections because of the open ET?
hi,
no one ever said i would be more prone to ear infections, did they tell you that?
where was the bed and breakfast?what was it called?
there is a holiday inn right there walking distance from poes office and mass eye and ear, thats where i stayed for my consult.
the reg drs dont care at all i have found, the only two that wanted to help were my hopkins dr and poe.
4 months for consult and 3 months for surgery a long time so get in soon.
i am in virginia and scp is minnisota, where are you? lib

 
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Old 07-30-2004, 07:32 PM   #8
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Re: Semicircular Canal Dehiscence and PET

Hi Lib: I went to the Mass Ear Eye Institute website and they have a topic list at the top where you can select site map. That then gives you a list of items under the category of general. Just look for accomodations and it will give you a list of places to stay nearby. I figured if I went back for a consult I would have to plan for at least a week since I am coming from far away. John Jeffries House 617-367-1866 is a bed and breakfast inn--I don't know anything about it but the link will take you directly to pictures and it looks very quaint and relaxing--just the kind of place you want to stay if you are stressed out over medical stuff and especially if you need a day or so to relax before heading home after surgery. Sounds like your place is close also but take a peek. I have had this increase in ear pressure in the last 3 days--I don't know why the difference--no difference in my lifestyle. The feeling is irritating and makes talking even more difficult. I find myself being quiet even at home --too much noise to explain things. Is ear pressure a symptom that you have also? I don't find any relief with lying flat or putting my head down. I have tried doing head stands and those gravity slant boards--no difference except that I feel pressure in my eyes but no immediate shutting of the ET like some people say they feel. Have to keep canceling get togethers with friends because it is too uncomfortable to talk because of ear pressure. I hate to live online socially but silence is the only relief and at least the boards here allow contact and chat with others.

 
Old 07-31-2004, 06:18 AM   #9
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Re: Semicircular Canal Dehiscence and PET

Quote:
Originally Posted by petpeeve
Hi Lib: I went to the Mass Ear Eye Institute website and they have a topic list at the top where you can select site map. That then gives you a list of items under the category of general. Just look for accomodations and it will give you a list of places to stay nearby. I figured if I went back for a consult I would have to plan for at least a week since I am coming from far away. John Jeffries House 617-367-1866 is a bed and breakfast inn--I don't know anything about it but the link will take you directly to pictures and it looks very quaint and relaxing--just the kind of place you want to stay if you are stressed out over medical stuff and especially if you need a day or so to relax before heading home after surgery. Sounds like your place is close also but take a peek. I have had this increase in ear pressure in the last 3 days--I don't know why the difference--no difference in my lifestyle. The feeling is irritating and makes talking even more difficult. I find myself being quiet even at home --too much noise to explain things. Is ear pressure a symptom that you have also? I don't find any relief with lying flat or putting my head down. I have tried doing head stands and those gravity slant boards--no difference except that I feel pressure in my eyes but no immediate shutting of the ET like some people say they feel. Have to keep canceling get togethers with friends because it is too uncomfortable to talk because of ear pressure. I hate to live online socially but silence is the only relief and at least the boards here allow contact and chat with others.
hi petpeeve,
yes i looked at john jefferies house, its more expensive so i am staying at holiday inn, its 129. thats medical rate. the parking is very expensive.
i dont know how i am going to pull off two trips, its so expensive but i have no choice, if i want to continue my carrer and not lose everything i have worked for thats my only choice, cant do hair when you cant talk or hear over the noise.
my symptoms change dailey its terrible. lib

 
Old 07-31-2004, 12:29 PM   #10
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Re: Semicircular Canal Dehiscence and PET

Hi Lib: I noticed that parking in the area seems to be expensive or off site for a lot of the accomodations. I don't remember the rates for the bed and breakfast but the 129 you got sounds good--they have a medical rate? That is nice. I guess a lot of the close hotels have some sort of deal with the hospitals because I got a medical rate when I went to Santa Barbara for testing and entry into the clinical drug study. Every little bit helps.

I got the impression from your note that you are a hairdresser. I can't even imagine talking above the noise created in that environment. Seems like there is always background music and if you aren't using a blow dryer someone else is. I have a hard time getting out my order for coffee at Starbucks because everytime I start to speak the darn coffee machines make noise and then the employee always says "What?" Do you have problems speaking even in the home setting where it is quiet?

 
Old 07-31-2004, 01:16 PM   #11
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Re: Semicircular Canal Dehiscence and PET

hi,
did anyone tell you that you would be more prone to ear infections, have you had any?
talking at all is annoying, anywhere, but its easier at home i guess, yes this creates big problems for me at work,but i have no choice at this point becaue i have to pay my bills.
do you work? lib

 
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