Author Topic: okiesandy  (Read 9213 times)

Windsong

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okiesandy
« on: March 13, 2007, 10:54:47 pm »
HI Sandy,

I got time out while posting a reply to you so here goes my second attempt.

Thanks for all the info. Wow, you did have a lot tests didn't you. I have only some of mine at home. The mroe detailed ones were coming later and i forgot about that, but no one called me about any findings so presumably they were ok.

My c3 and c4 were fine though and the ANA was 180, then and labelled postive but i think that's a low pos.

I'm glad you found some new docs and good help. You've been on quite a journey with your hearing. I heard that they do sometimes give chemo for that.

Thanks again. It's nice to be able to get info like this. So much of what we go through can be quite bewildering.

All the best,

I forgot to post under your previous reply so my apologies if this comes up as a new post
W.

okiesandy

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Re: okiesandy
« Reply #1 on: March 15, 2007, 09:26:53 am »
Your ANA is a little higher than mine. Still worth looking at as a marker. I would seriously push your doctor toward some kind of treatment to help perserve your hearing. You have somethng going on.

Do you remember if you had Anti-68 kD (hsp-70) antibodies test done? These were really my only positive results besides the higher CRP two years ago.

What ever you have you are losing your hearing and the doctors are just letting it happen. They think I have some other autoimmune issue and can't figure out what it is. Not that any body really digs into it. I am totally sick of doctors at this time. Too little, too late is their motto. I have taken an in your face attitude lately and it is working a lot better than my previous attempts to get someone's attention. I had to ask to have my blood tests done by Immco Diagnostics. Positive ANA denotes the presence of autoimmune disorder. Also, had to ask for the second series of blood tests.

You hang in there and keep pushing for your hearing. It is precious.

Sandy
Cyberknife 1/2006
Clinton Medbery III & Mary K. Gumerlock
St Anthony's Hospital
Oklahoma City, OK
Name of Tumor: Ivan (may he rest in peace)

Windsong

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Re: okiesandy
« Reply #2 on: March 15, 2007, 11:04:11 am »
Hi Sandy,

Thanks so much for taking the time to share this with me. This whole autoimmune factor keeps coming up with me regarding a number of things in my health and iso something I am pretty convinced plays a role in a few diagnoses I've had the last tne yrs. More recent research seems to point that way at least as far as the focus of many studies. Certainly lupus and ms and sjogrens and such along with my Ana count was first mentioned by a dear rheumatologist in the mid 90's. Unfortunately, shortly thereafter i had to switch my family doctor to someone in my own town  so the referrals now are to new people for some things.

I don't know if the specific tests which were found positive for you are actually availlable up here? I will ask.

Your c3 and c4 counts are done differently than up here? mine are 1.12 and .25? (G/L)

Do you know what ENA tests are? I had a bunch of them done but that was negative. My anti ds DNA was low really at 40.4 and up to 200.0 is ok.
(they made changes to the reference range at the beginning of June last year).

The precise causes of so many ear disorders isn't really known is it? Basically they treat the symptoms and even that doesn't work most of the time.

We do have a menieres clinic at the hopsital out of which my neruotologist works and I know he has a strong interest in hearing preservation, as for example he wrote a book about how drugs affect hearing with respect to otoxicity etc. It's all so ompclicated really the biochemistry of the inner ear.

I've even heard that hypoxia can play a role and a host of different things. One can get dizzy pondering all this lol.
I am glad you were able to get to the bottom of your situation and sincerely cheer you on in preserving your hearing!

I am still following up on my previous tests as i really don't know which were done that were more detailed. Perhaps a new set during this exacerbation of mine would be a good idea. In any case I am having an mri soon to rule out some things as I have other things going on in my nose too.

Funny how male voices are easier to follow? Some female announcers on tv are totally gobbledygook for me rofl...

Big thanks,

W.





okiesandy

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Re: okiesandy
« Reply #3 on: March 15, 2007, 03:00:33 pm »
windsong

I dont know how long my hearing will be preserved. It is up and down. I am just buying time at this point. At least when it has gone to the pits they have always been able to bring it back. Only having one hearing ear is a breeze compared to losing all hearing. I am very protective of the only sound I have.

Womens voices are sometimes hard for me. I can't understand my lady boss. Wrong pitch I guess.

I am taking allergy shots and that may be helping some. Allergies and autoimmune are all tied to gether so I understand. When tested I was allergic to several things and not strongly allergic to anything.

All your doctor has to do is order the tests kit from Immuco. They are in Buffalo NY. I think my tests were about $600.00. It was worth it to me. I am really tired of the guessing.

I have no idea what ENA tests are. When you find out let me know. My DNA (ds) was a false positive at 34 my printout says -30 negative 30-60  Low Positive 61-200 Positive 200+ is strong positive

I am sometimes shocked at how many of the AN people have Autoimmune issues. Still the doctors say no connection. Yet when you get to really researching you can see there could be a connection.  Someday some smart doctor will put all of this together.

As I say try to save what hearing you have, what ever it takes

Sandy
Cyberknife 1/2006
Clinton Medbery III & Mary K. Gumerlock
St Anthony's Hospital
Oklahoma City, OK
Name of Tumor: Ivan (may he rest in peace)

Windsong

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Re: okiesandy
« Reply #4 on: March 15, 2007, 03:47:00 pm »
Sandy,

The ENA tested for Jo_1;  RNP ;  Scl_70;   Sm ; SS_A, and SS_B.

Well, as we know all know, when we have one ear left for hearing we must guard it like the crown jewels if we can.

I have confidence in my neurotologist and his investigations. I will gently ask if he's considered the autoimmune factor. The thing is when you get down to checking out the research it doesn't come up with a whole lot of treatment. Along with the chemo and the dexamethasone i did see methotrexate as being tried. On the menieres org site there is a long list of things to try  such as foods, and so, but so much becomes anecdotal too. In any case it doesn't hurt to try a lot of them.

My latest difficulties were harder this time around because of the horrid pressure also in my ears, worst it has ever been. So far today it seems lessened which is a relief.

Please know how good it is to have this sort of thing shared here. For each person who writes about one thing there are alwasy plenty more who don't write in but benefit from it.

Keep well,
W.

okiesandy

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Re: okiesandy
« Reply #5 on: March 16, 2007, 03:00:54 pm »
It took forever to get the attention of my doctor about the ear pressure thing. When I have the pressure I end up having a hearing loss attack.

I do the "John of Ohio" thing from the menier's site. That does seem to help. It took almost two months to see the difference. We will just have to see if it helps long term. I also take an immune modulator. It is by a naturapath. Starr Walker Immune Support Complex. A lady in our office has bad lupus. She could not walk and her doctor said after 20 years there was nothing he could do. She went to this doctor and in three months she was walking. No after seven months she is working 12 hours a day 4 days a week. This is one of the things she was taking. Google "Starr Walker" and look this up. It does not feed the immune system it modulates it. At least so they say. What ever works just a little bit just adds to the whole.

Sandy
Cyberknife 1/2006
Clinton Medbery III & Mary K. Gumerlock
St Anthony's Hospital
Oklahoma City, OK
Name of Tumor: Ivan (may he rest in peace)

Windsong

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Re: okiesandy
« Reply #6 on: March 27, 2007, 07:57:07 pm »
Hi Sandy,

Oh that pressure thing..... we had a storm front come through the other day and the pressure build up in my ears was so rapid but then i found the barometric pressure had droppedvery fast too. Not fun.

Interesting how natural healing things can help, yes. Right now I have a frontal sinus thing going on and am on a nice big antibiotic. I wouldn't know where to begin for  a natural remedy form the list on that site it's so long. I thought ithe meds were working  as i began to feel better after 3-4 days but oh tonight is not good. Even the top part of my head feels strange. Looks like a number of things going on for me in my head right now. The menieres angle is there, also the autoimmune maybe, (re ears and hearing, balance etc. and who knows maybe it's the sinus thing and behind the nose too which is the culprit and then I won't have to think its the ventricles. Follow ups happening very soon and hopefully i will get this all cleared up. I haven't had the tv on for many days now. Good thing I have other interests lol.  :) Sure do want this "fixed".....rather than scowl it's more fun to smile sigh....the rpickly goings on in my head never mind the pressure in the nose bridge and upwards.

Hope you are doing ok...

Windsong


Dealy

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Re: okiesandy
« Reply #7 on: March 28, 2007, 10:46:47 am »
Windsong- I read through this thread this morn and I am kinda lost what you two are talking about. However-since we both had FSR and 25 sessions and notice a similiar compariosn between us. My last prelim MRI showed signs of edema or swelling. Have not heard nothing official from JHH but they put me on another 6 day course of Predisone. I like you-when a storm front comes through my head feels like a pressure guage and my AN ear feels like it has a whole bunch of socks stuffed in it. I  have had allergies problem ever since last fall but nobody will address it. Too me-and even my wife says-I sound like I always have a cold. Dr. R> at JHH is never really explicit in his explanations-it always seems generic too me. Do you experience the same thing? My hearing is getting worse in my only hearing ear by the week. The only way I can hear myself or anybody else now is if I cup my hands over my one ear too hear. We are going too see my major ENT in KC on the 6th of April. He claims he can assist in my hearing issues and give me some answers. Hoping for that. I am coming up on 9months post_FSR and feel that my hearing has crashed awful fast. Thanks-Ron

Windsong

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Re: okiesandy
« Reply #8 on: March 28, 2007, 01:17:51 pm »
HI Ron,  :)

I noticed too that we share these symptoms. Glad you wrote as I will be interested in what your ENt says about how he can help.
My 1 yr ct scan did not show edema or swelling, certainly it was never mentioned (they only said i would have had some immediately post fsr. I am finding that the ciprodex helps in my ears for the stuffed sock feeling. My neuroENT said this was a test they use but i never did ask for what .. (too much going on to conversationally follow up on each statement, call it An moments). Yes those storm fronts... the worst pressure feeling for me was the other day, I stood here looking out at the clouds and dark coming and could physically feel my entire head reacting.. a most strange expercience! I have wondered about allergies but no doctor has suggested it for me. generic explanations by your dr. r? What a neat way of putting it. I know mine is checking for a problem in my IAC with this mri coming up in a few days and honestly I am hoping i do not have a second An as i saw a while back that your symptoms were so simialr to mine. I, too, found recently (in last month) that cupping my ear or pulling the other ear fwd let me hear more clearly...

my neuro-ent has mentioend menieres as a possibilty... what concerns me is the simialrity to the road my hearing loss in An ear took...

i've given up on most tv as it's too garbled unless vol is way up...

using a hearing aid has been suggested but i will wait until after the mri for dealing with that... i can't have the trans ear...again i did not ask specifically why as i do feel my ent knows what he is talking about as he said the trans was at my hospital ten yrs ago even tho i mentioned a newer model only recently came out  and about the folks here who are using them. ..i'm guessing but thought it might be becasue i have holes in my eardrums....of course i will be following up on all this as it's really unnerving to be losing hearing in my one remaining ear....

i forgot to mention that i am almost 1 1/2 yrs post 25 fsr...and realizing that this hearing loss can very well have zip to do with the fsr on other ear lol...

glad you wrote in as i said!

all the best,
W.
« Last Edit: March 28, 2007, 01:25:39 pm by Windsong »

Dealy

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Re: okiesandy
« Reply #9 on: March 28, 2007, 01:47:29 pm »
Windsong- Ditto on the TV. Heck I have no idea what they say-and if I turn it up it gets worse. My wife came for lunch where I work> I cannot talk on the phone anymore because of my bad hearing so she does for me. Called JHH on recent course of steroids they ordered-which I started on Saturday. Last night was a doozzy for my head. Felt like alot of pressure and balance problems. Nurse for DR. R. said they looked at my last MRI-9 month-no swelling indicated and AN is stable. Quite confusing. Place where I had MRI said sighns of edema. Nurse told my wife wants ENT in KC to look for fluid in ear. Thinks this is causing balance problems. Will let all know what transpires in KC. I would just like so much too hear again-even just alittle w/o everything sounding garbled as if I had my head underwater-Thanks-Ron

okiesandy

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Re: okiesandy
« Reply #10 on: March 28, 2007, 02:12:31 pm »
For 2 years my doctors gave me allegra for allergies. I finially insisted I have allergy testing. This is the protocol at HEI for AIED and hydrops. I did not test really high on anything. However, trees, 3 molds, cats, some grasses and rag weed were moderately high. I started on allergy shots in October. Now all of my co-workers are suffering because we have had a very warm spring and all of the trees are budding at the same time. So far I have just had a mild eye thing and a little stuffy. Much, much better then in years past. My allergy nurse said Allegra etc just treat the symptoms and not the cause. What ever it is my stuffy ear is less of a problem than in times past. I will keep my fingers crossed that it doesn't come back.

I am horrified that I will lose all hearing. Don't wait for your doctor to put a name to what ever is wrong. Do your research. I ask two years ago for allergy testing and all I got was Allegra.

I was told that low pitch hearing loss is a sign of hydrops (both forms of Menier's).  I can lose 50% of my only hearing ear in a day. So far steroids have brought it back. I now have steroids on hand so that if a drop happens I can start on them and not wait for the doctor to see me. It is very important to start the protocol as soon as possible.

Sandy
Cyberknife 1/2006
Clinton Medbery III & Mary K. Gumerlock
St Anthony's Hospital
Oklahoma City, OK
Name of Tumor: Ivan (may he rest in peace)

Dealy

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Re: okiesandy
« Reply #11 on: March 28, 2007, 03:17:21 pm »
Okiesandy- Sorry if I highjacked this thread but you gave some amazing advice that most of ius do not even think of in relation to hearing. It will be interesting with what my ENT comes up with because he was insistent too my wife when he talked too her that we come to KC too see him. So maybe he knows something. The usual ENT that we go too-no disrespect-all he does is clean out my ears of wax (I'M a wax factory) and that's it. we have too drive 100 miles too see him and 400 to KC. However-I told my wife we may have too switch and use the one in KC as official and the local one only in emergencies. Heck-he won't even prescribe me Steroids. Says that is the job of the place that gave me radiation. Well I wish you the best Windsong on your MRI and OKiesandy-here is hoping your hearing issue somehow gets resolved. My hearing is so bad that I have decided that if I am too go deaf-well that is something I just will have too deal with-pretty scary though to think that. Berst wishes too you both. Thanks-Ron.

Windsong

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Re: okiesandy
« Reply #12 on: March 28, 2007, 03:56:55 pm »
Ron and Sandy,

It truly is good to be able to have this kind of dialogue here. Thank you both.

Sandy, I too wish and hope that your hearing issues get resolved  for you. And it's good that you have tretament on hand without having to wait to see someone.  I am fortunate to have a neuro-ent who sees me pretty quickly. Also, for me it's reassuring to know that doctors from around the world come to study with him plus he teaches at the med school here and is involved in all sorts of things. I'd be scratching my head if I had to think who to see other than him, for example. As for the specialized blood tests you mentioned before it's good that others here are made aware of this sort of possibility. Support groups like this one have certainly created more informed patients. ( A benefit for both sides)

Ron, that is a long way to go for you, 400 miles;   it makes my 1/2 to 1 hr trip for mine  seem short lol . One of my other ENt's I've had who also was involved in teaching other ents ear things, etc. , referred me to my neuro-ent for more specialized investigations, so i'm happy to hear that you are doing this. Thanks for the best wishes re the mri. Between my fsr doc and my ear doc i am confident they are doing the best for me, it's always good to know they care for our good outcomes.  Like you, I've thought well if i do go deaf i will simply have to deal with that (even as i think no. no, no....) at least we know we are doing what we can in the meantime.

Cheers everyone.
W.

Windsong

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Re: okiesandy
« Reply #13 on: March 30, 2007, 05:58:29 pm »
Sandy,

You may have said somehwere here already but which steroid do you use for your ear?

I thought you might be interested in this clinical trial up here....I found the site last year and thought i'd post it.....

it goes until 2008 i see....

http://clinicaltrials.gov/show/NCT00271791

W.
PS Ron, I'm up here . My dr. R is at TGH which is part of UHN. (Toronto)


okiesandy

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Re: okiesandy
« Reply #14 on: April 01, 2007, 01:53:18 pm »
Ron,

Where do you live?  I am in Oklahoma City. I am a native of Kansas City. I would not say the doctors I go to are the very best. Good though for this. Wasn't happy with the options they offered me for my AN. Radiation was never an option with them. I did that on my own.

As for the AIED and Cochler Hydrops. The doctor I go to now was a fellow with HEI. I sometimes feel he is not agressive enough with my treatment. I had to fight for a year to get him to write me a perscription for prednisone to keep with me. Then when I told him I had been in touch with several others that had AIED and/or hydrops and that was the protocol their doctors used. He put me on 5 mg prednisone every other day. That was after a month on high dosage with taper for the 6th time in two years. I had to insist on allergy testing and insist on going to Rheumatologist. Rheumatolgist had only treated 5 people with AIED and all have gone completely deaf. He wanted to put me on Methotrexate. I told him that information was out dated. After several studies they don't think it worked. (his five patients should have proved it didn't).  Then suggested Cytoxin. I passed on that because of the increased risk of a really nasty form of cancer that some people get from this drug. And no proof that it works either.

One of the ladies I am in contact with is going to Dr. Derybery at HEI in April. I will keep you informed as to what the use for treatment. Dr. Derybery is a leader in this field and says only 6% of her patients go deaf. That is better then the 14% who retain their hearing after 36 months in some other studies.

Most ENTs are not really informed about AIED or CH. Neurotologist is some better. It is very important that steroids be started as soon as possible after a hearing loss. It is also very hard to get a diagnosis because many of the menier's patients also have autoimmune things going on and test positive. My doctor said they may all be the same thing, just effecting some people differently.

I know there are some others on this board that have some loss of hearing in the good ear and just never equated it with anything.

Let us know how your appointment turns out.

Sandy
Cyberknife 1/2006
Clinton Medbery III & Mary K. Gumerlock
St Anthony's Hospital
Oklahoma City, OK
Name of Tumor: Ivan (may he rest in peace)

 


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