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    Old 07-11-2004, 04:13 PM   #16
    lib
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    Re: for the undiagnosed dont forget these things as most drs dont bother

    Quote:
    Originally Posted by snapcracklepop
    Hi Lib,

    I have lots to discuss with you. At Mayo, I was told my best chance of fixing the PET was to gain weight. I had unexplained weight loss, which was ultimately believed to be caused by a thyroid problem. Over the last year, I lost 15 pounds - about 12% of my "normal" weight. I am trying to gain it back, and have put 7 pounds back on. So far, no improvement in the PET symptoms.

    I am very thin also. I had acid reflux with an ulcer long ago (in about 1988). That was my only bout with it. I had strange, constant, sinus-type infections the winter of 2003. The PET started Nov. of 2004. How did the meds contribute to your development of PET? Were they antibiotics?

    Do you believe your TMJ is a separate issue? I suspect it could be related to the PET. I wonder if TMJ could cause PET or PET could cause TMJ. What do you do for your TMJ?

    I have PET in the left ear. As for the right ear, I sometimes think I have it there too but to a lesser degree. Other times I think I don't have it in the right. Do you have it in both ears?

    Have you had a consult with Dr. Poe? What did you think of him? Do you know of anyone with PET who had the surgery with him? Was it successful? Do you have any concern about his use of cadaver tissue? Couldn't he use the patient's own tissue from a tissue graft?

    I live in Minnesota. Mayo Clinic told me the first step was to gain weight. They have seen only 5 people with this. All 5 gained weight. It worked for 1 person. Mayo describes it as the shrinkage of fat pads surrounding the eustachian tubes. They said the second step was to try Premarin nose drops (they no longer use a spray). This is a form of estrogen. It could thicken the mucus lining and thereby sort of build up something like scar tissue. They said the chance of this helping was very doubtful. I have not tried it yet. Are you still trying your nose spray? The spray has not made the problem worse, has it?

    One doctor at Mayo said the next step would be ear tubes. They told me they are very hesitant to do that because the tubes didn't help any of the other people and they could make the problem permanently worse. One doc at Mayo Minnesota called the Mayo clinic in Scottsdale, Arizona. They've had 3 patients with it. They all tried weight gain and ear tubes. One patient was helped with ear tubes (I doubt that patient really had PET).

    According to Mayo, the next step used to be injection of a fatty material directly into the eustachian tube. They never did this procedure but it was done at other clinics across the country. This was a while back and is no longer being done because of complications of operating directly in the eustachian tube area with the location of the carotid artery nearby. Several patients died during the surgery when the carotid artery was cut or damaged. They also said some patients were made permanently worse by this.

    Mayo described one final option that they said was extremely risky and could also make the problem permanently worse. Nerves from the eustachian tubes run to a bone in the back of the throat. This area acts as a pulley system, allowing the eustachian tubes to open and close. The procedure is to shatter the bone and thereby inactivate the pulley system, which should allow the eustachian tubes to close.

    While any info is good to have, I can't say that I really trust the docs at Mayo. They don't seem to know much about PET.

    Do you have any info on numbers of people who have PET? Mayo said it is extremely rare. Have you heard of anyone else trying to gain weight to fix the problem?

    Have your symptoms changed over time or gotten worse? Did you have the snapping problem at the start of your PET? If not, how long have you been snapping? I am devastated by the snapping. It is the worst thing about PET. I have only had the snapping for a few weeks and don't know how I will live with it. Mine sounds like metal snapping behind my nose when I swallow. As for coping, I'm not doing well and can't imagine living like this the rest of my life. I saw on-line that someone said (maybe it was you) that this sound comes from the eustachian tube trying to close. While it is horrific, could this mean the body is trying to fix the problem on it's own? Could it be some kind of sign of hope? Or is it just a sign of the symptoms worsening? I suspect my snapping was caused by the tympanogram or a result of the thyroid surgery. Have you ever had a tympanogram or other tests that you felt worsened your PET? The results of the tympanogram showed that i have PET to a very high degree in the left ear. The right ear is questionable.

    Do you have any experience with either the PET or the TMJ with the sound of glass breaking? I have a friend with TMJ. She has the sound of breaking glass when her TMJ is bad.

    Have you tried tubes in your ears? One of the Mayo docs said tubes change the situation for people with PET. For some, tubes make it worse. For others, tubes make the PET different and possibly more tolerable.

    Have you found any things that you avoid because they make your PET worse? Mayo told me to never use decongestants, sleeping pills like Unisom (they have a slight decongestant in them) and to be careful with pain medicine. They thought Tylenol might be okay but advil, naproxin, aleve could be trouble. I have found that I cannot tolerate Tylenol, it makes my ears worse. Aspirin is the only one I will use but I have to be desperate. Even aspirin makes my ears worse. I now wonder if any medication can potentially make my ears worse. I know for sure that the pain medicine given to me in the hospital for my thyroid surgery, made my ears terrible.

    Have you found any things that help your PET? Or any things that help you cope better? One doc at Mayo said drinking lots of water would help. I'm not sure on this.

    One of the Mayo docs told me PET can affect your speech. Have you heard of this?

    Have you heard of anyone losing some of their hearing from PET? Is there any risk of this with Dr. Poe's procedure?

    I read on-line that one man believes his PET is from Botox injections in the roof of his mouth. I had Botox injected in eye wrinkles for cosmetic reasons. I had this done 3 times over the last 2 years. I wonder if this could be a factor. The last Botox I had was the middle of November. It takes 2 weeks to be fully activated. Two weeks later, I had PET. All of the ENT docs I have consulted with say there is no connection and that Botox is safe. I am not convinced.

    Do you have any other weird symptoms elsewhere in the body that you think could be related to your PET?

    How long have you had PET?

    Have you had anxiety from it? I sure have.

    Have you been to the Shea Clinic? What do they do for PET?

    Thanks for discussing all this with me. It sure is great to have someone else who understands...

    SCP

     
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    Old 07-11-2004, 04:30 PM   #17
    lib
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    Re: for the undiagnosed dont forget these things as most drs dont bother

    hi scp,
    not sure if i can answer all your q s but i will try to remember them.
    mine started last fall.
    dr poe said gaining would not help at this point, so i quit trying.
    it has gotten worse since the fall,the snapping started in feb.
    the drops did not help me, but you never know.
    if the pet gets bad enough it can effect your speech, you cant hear because of the body sounds, but it will not hurt your hearing.
    i do beleive tmj is a seperate issue, it really has no effect on the tissue in the e tube, dr. poe is the expert and he says it is a seperate issue so i do think he is right.
    i have not found anything that helps, i wish i had.
    the facts are clear, we are missing tissue and thats what causes this, its terrible!
    i have heard tubes will or can make it worse so i am to afraid to try it.
    i never went to shea, only spoke to people who had been there, some good some not, they put a silicone tube in the e tube to narrow it.
    dr poe has never over corrected anyone yes there are risks but they sound minimal.
    anxiety...oh god...i would rather be dead, xanax for me for now.
    honestley, the snapping does not mean its getting better for me worse, i have only gotten worse.
    i hope this info helps, please let me know if i missed anything. thanks lib
    yes i have seen poe, no not worried about the tissue, this man knows his stuff no question, hes wonderful.

    Last edited by lib; 07-11-2004 at 04:38 PM.

     
    Old 07-13-2004, 05:57 PM   #18
    lib
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    Re: for the undiagnosed dont forget these things as most drs dont bother

    scp and petpeeve,
    do you get reverberation in your ears , do outside sounds bother you?
    when you hold the phone on one ear does the other ear reverberate to the persons voice?
    i cant stand it my eardrums move to the rate of the person talking.
    thanks fellow ears! lib

     
    Old 07-13-2004, 09:25 PM   #19
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    Re: for the undiagnosed dont forget these things as most drs dont bother

    Lib,
    I do not think I have the reverberation problem. It sounds bad. I wonder if it develops as the PET progresses.

    Do you have it equally in both ears? If the PET is worse in one ear, try not sleeping on that side at all. I have found that sleeping on my back or on my side that is better with the PET makes a big difference. If I don't do this, my bad ear is hideous all day.

    How long did you wait for a consult with Poe? I called Monday and the first available is Nov. 18! When did you see Poe? Are you having one ear done in August? When will he do the second ear?

    What are the risks of the procedure?

    What does Poe say about the snapping problem?

    Once a patient is fixed, what will prevent this from happening again?

    SCP

     
    Old 07-14-2004, 05:45 AM   #20
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    Re: for the undiagnosed dont forget these things as most drs dont bother

    Quote:
    Originally Posted by snapcracklepop
    Lib,
    I do not think I have the reverberation problem. It sounds bad. I wonder if it develops as the PET progresses.

    Do you have it equally in both ears? If the PET is worse in one ear, try not sleeping on that side at all. I have found that sleeping on my back or on my side that is better with the PET makes a big difference. If I don't do this, my bad ear is hideous all day.

    How long did you wait for a consult with Poe? I called Monday and the first available is Nov. 18! When did you see Poe? Are you having one ear done in August? When will he do the second ear?

    What are the risks of the procedure?

    What does Poe say about the snapping problem?

    Once a patient is fixed, what will prevent this from happening again?

    SCP
    hi,
    because i dont know what i can really say i will keep it simple.
    i waited months to get in to see him i made an appt in feb and it was july 1, but i went may 6 as my dr. was in contact with him on my case and an opening came up.
    yes i am having one ear in aug, then i have to wait 2-3 months for the second, but i am praying that they will both be done if circumstances allow.
    my snapping is the tube, the muscle i guess.
    the risks seem low, nothing that will stop me from this, i trust this man with my life, and after you meet him you will also.
    i am not sure if it can prevent this from happening again, i am going to ask but it is my understanding that scar tissue will form and that should last indefinatley.
    i think my right ear is worse but the left is catching up quick, i wonder what sleeping position has to do with it?
    do you think you still have any acid reflux problems?
    also what did you mean by anything else going on in the body? what do you get? i have been having a lot of muscle spasms.
    did you make an appt, i hope so, no human should have to live with these disturbing symptoms. lib

     
    Old 07-14-2004, 02:57 PM   #21
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    Re: for the undiagnosed dont forget these things as most drs dont bother

    Lib,
    I'm trying to think all this through and still have some questions. What did you mean by your phrase that you are praying both ears will be done if circumstances allow? The other ear must be bad enough to qualify?

    No, I do not have acid reflux issues that I know of. Do the meds for that play a role in your PET? Speaking of meds, were you told to avoid decongestants and pain meds? And were the meds you took for sinus infections a factor? Were these antibiotics?

    Did the nose spray make you worse?

    My appointment is Nov. 18. Will you be flying or driving? Can you fly home right after ear surgery? How long is the hospital stay?

    Is there a website explaining the procedure? Can you tell me the risks? What is the recovery like?

    Is the doc nice and understanding?

    As for what I meant by other things going on in the body, I have been diagnosed with a dozen things from by Mayo evaluation - thyroid cancer and glaucoma to name a few. Where do you have muscle spasms? I have pain in the arms and legs that is being investigated.

    You must be counting the days until your surgery!


    Keep me posted, scp

     
    Old 07-14-2004, 05:12 PM   #22
    lib
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    Re: for the undiagnosed dont forget these things as most drs dont bother

    Quote:
    Originally Posted by snapcracklepop
    Lib,
    I'm trying to think all this through and still have some questions. What did you mean by your phrase that you are praying both ears will be done if circumstances allow? The other ear must be bad enough to qualify?

    No, I do not have acid reflux issues that I know of. Do the meds for that play a role in your PET? Speaking of meds, were you told to avoid decongestants and pain meds? And were the meds you took for sinus infections a factor? Were these antibiotics?

    Did the nose spray make you worse?

    My appointment is Nov. 18. Will you be flying or driving? Can you fly home right after ear surgery? How long is the hospital stay?

    Is there a website explaining the procedure? Can you tell me the risks? What is the recovery like?

    Is the doc nice and understanding?

    As for what I meant by other things going on in the body, I have been diagnosed with a dozen things from by Mayo evaluation - thyroid cancer and glaucoma to name a few. Where do you have muscle spasms? I have pain in the arms and legs that is being investigated.

    You must be counting the days until your surgery!


    Keep me posted, scp
    hi scp,
    i am praying for both ears to be done on the ninth , he only does them one at a time, but i am praying for a miracle thats all. yes they both need surgery.
    no the acid reflux meds dont play a role, acid reflux can contribute to pet.
    i was not told to aviod anything but i knew per my conversation with the dr. it was bad to take decongestants, i dont know about the rest of the meds.
    yes the sudafed, claratin, and flonase were a factor, but the first ent i saw misdiagnosed me with mineires and allergies and viola....pet
    which nose spray...the hormone spray? if so no it did nothing no good no bad.
    we are driving, yes you can fly but you will have to have a tube in tour ear if you fly. its outpatient so no hospital stay.
    no website, risks are over correcting the tube, hes never done that, only under and thats ok, other than that really its nothing that would put you off.
    he is very nice, he knows this is horrible to live with and he is understanding of the problem. he and my dr at hopkins have the best bedside manner i have ever come across. put it this way, i am scared of surgery, because i have never had it, but i cant wait to see dr. poe again because he talks to you i have asked a lot of questions and he always answers them in a way i can understand, hes a real person to talk to as well. if all the drs were like him and dr. carey this world would be a much better place. you wont regret going i promise, hes a blessing! i wrote a letter with my qs after my appt and i got a very detailed letter back almost 2 pages, anyone in my family or friends that read it could not beleive what a great letter he took the time to write me,and they all said now thats an incredible doctor and i agree.
    muscle spasms everywhere, what else did they dx you with?
    what are your pet symptoms exactley? lib

     
    Old 07-14-2004, 10:00 PM   #23
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    Re: for the undiagnosed dont forget these things as most drs dont bother

    Hey Lib,
    Thanks for all the info. It all sounds very reassuring. The doc sounds wonderful. You are so lucky to have two great docs. I have not had any good docs. In fact, all 5 have been dinks. They think they are gods and either misdiagnose me or want nothing to do with me after knowing the real diagnosis because they don't know what to do with me. I don't trust any of them. I am now searching for a good one so I have a doc to advocate for me. I thought your idea of my local doc getting in touch with the other doc about my case was a good idea. Plus, I would like to get a few questions answered plus pleading my case for a better date would be good also. Don't know how I will make it to Nov. now with the snapping. Even in just the last week, I can't believe how much worse the snapping is.

    You mentioned Hopkins. Is this the one in Baltimore? Is that where you are?

    Do you know of anyone who has had successful results with the procedure? I am assuming that the cadaver tissue they start with is actual fat pads from the eustachian tubes, is this correct?

    How did they finally correctly diagnose you? Were there specific tests?

    Can I ask you how much weight you lost? What did the doc mean by it wouldn't help to gain weight at this point? Do you know of anone who was helped by weight gain? I need to know because it has been brutal trying to gain. I am up 8 pounds and sick of trying. Now clothes don't fit (I got rid of bigger clothes long ago) and forcing myself to eat constantly feels awful. If it won't help I want to stop trying so hard.

    As for my exact symptoms, I have fullness and pressure in the ears and head. Voices sound funny and my speech is changing. I hear my heartbeat in my ears. The body sounds make it harder for me to hear. I have headaches plus the snapping behind the nose. I also have clicking, popping and crunching sounds. I don't know for sure if this is in the ears or the TMJ problem. I was told at Mayo that it was in the ears. Not sure I believe them. I also get disoriented when it is really bad. It is hard to think or concentrate. I have some relief when I first wake up in the morning. My ears are not full and what I call blocked up. This last an hour or so or until I eat breakfast. As soon as I eat, the ears are blocked for the rest of the day. Docs tell me this is due to lying flat at night. Do you have this same little bit of relief in the morning?

    I also took sudafed and allegra briefly but they must have had an affect.

    I am not having muscle spasms that I know of. Mine seems more like pain in the arms and legs. It comes and goes in the arms. The legs are more constant. I'm having a bone scan next week.

    I went to a brilliant oral surgeon this week who works with TMJ. He told me muscle spasm can be related by TMJ. It can be in the arms and legs and all over the body. He said it was possible that I was clenching the arms and legs almost in a fetal position at night when I clench my jaw and this could explain the pain I feel during the day. He wasn't sure. He did order an MRI to look at the TMJ issue. Plus he is extending the MRI to examine the eustachian tubes. Maybe it will show missing fat pads. What do you do for your TMJ? Does yours ever sound like breaking glass?

    This is getting long so more about my depressing diagnoses next post. I am one complicated case.

    Just curious, how old is your child? My kids are 11 and 9. The oldest a girl, the youngest a boy. How has your child been with having to deal with your illness? My kids seem to be getting used to it but it's really hard.

    I will be praying for you for an excellent surgical outcome!

    scp

     
    Old 07-15-2004, 06:35 AM   #24
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    Re: for the undiagnosed dont forget these things as most drs dont bother

    Quote:
    Originally Posted by snapcracklepop
    Hey Lib,
    Thanks for all the info. It all sounds very reassuring. The doc sounds wonderful. You are so lucky to have two great docs. I have not had any good docs. In fact, all 5 have been dinks. They think they are gods and either misdiagnose me or want nothing to do with me after knowing the real diagnosis because they don't know what to do with me. I don't trust any of them. I am now searching for a good one so I have a doc to advocate for me. I thought your idea of my local doc getting in touch with the other doc about my case was a good idea. Plus, I would like to get a few questions answered plus pleading my case for a better date would be good also. Don't know how I will make it to Nov. now with the snapping. Even in just the last week, I can't believe how much worse the snapping is.

    You mentioned Hopkins. Is this the one in Baltimore? Is that where you are?

    Do you know of anyone who has had successful results with the procedure? I am assuming that the cadaver tissue they start with is actual fat pads from the eustachian tubes, is this correct?

    How did they finally correctly diagnose you? Were there specific tests?

    Can I ask you how much weight you lost? What did the doc mean by it wouldn't help to gain weight at this point? Do you know of anone who was helped by weight gain? I need to know because it has been brutal trying to gain. I am up 8 pounds and sick of trying. Now clothes don't fit (I got rid of bigger clothes long ago) and forcing myself to eat constantly feels awful. If it won't help I want to stop trying so hard.

    As for my exact symptoms, I have fullness and pressure in the ears and head. Voices sound funny and my speech is changing. I hear my heartbeat in my ears. The body sounds make it harder for me to hear. I have headaches plus the snapping behind the nose. I also have clicking, popping and crunching sounds. I don't know for sure if this is in the ears or the TMJ problem. I was told at Mayo that it was in the ears. Not sure I believe them. I also get disoriented when it is really bad. It is hard to think or concentrate. I have some relief when I first wake up in the morning. My ears are not full and what I call blocked up. This last an hour or so or until I eat breakfast. As soon as I eat, the ears are blocked for the rest of the day. Docs tell me this is due to lying flat at night. Do you have this same little bit of relief in the morning?

    I also took sudafed and allegra briefly but they must have had an affect.

    I am not having muscle spasms that I know of. Mine seems more like pain in the arms and legs. It comes and goes in the arms. The legs are more constant. I'm having a bone scan next week.

    I went to a brilliant oral surgeon this week who works with TMJ. He told me muscle spasm can be related by TMJ. It can be in the arms and legs and all over the body. He said it was possible that I was clenching the arms and legs almost in a fetal position at night when I clench my jaw and this could explain the pain I feel during the day. He wasn't sure. He did order an MRI to look at the TMJ issue. Plus he is extending the MRI to examine the eustachian tubes. Maybe it will show missing fat pads. What do you do for your TMJ? Does yours ever sound like breaking glass?

    This is getting long so more about my depressing diagnoses next post. I am one complicated case.

    Just curious, how old is your child? My kids are 11 and 9. The oldest a girl, the youngest a boy. How has your child been with having to deal with your illness? My kids seem to be getting used to it but it's really hard.

    I will be praying for you for an excellent surgical outcome!

    scp
    hi,
    yes hopkins in baltimore, i live in virginia, after going to several drs her i went to hopkins, no one around could help me.
    i think finding a good dr there is a good idea, i am not sure he will be able to get the appt moved however, mine was a miracle as a conference had been canceled and my dr. was trying to make sure the dx was correct. dr poe dxed the pet, in 2 seconds, by looking at my tubes with an endoscope on a tv monitor. hes the expert. my defects are small so i can understand why it was hard to find them, at any rate my dr. at hopkins cares and thats what matters to me.
    i lost a few pounds in the begining but the stress and being misdiagnosed made me lose at least another 10 lbs, but i gained it back and a few more trying to help the ears, by the time i got to poe, i could not eat another donut but he said lose what you did not have as i was not going to gain it where i need it, weight loss is some what of a myth.
    i have a splint but i really think its a waste, my ears are my problem, but i am continuing anyway for now. they are 2 seperate issues.
    the tissue is alloderm, its used for tissue replacement, it can be used anywhere in the body.
    my advice is make sure your on the cancel list at poes, find a very understandind doc there, get some meds to try to help you cope.
    i know the wait is long, trust me, but i did it and so can you.
    my daughter is 9, shes hangin in there, its just not fair she is missing out on so much.
    are you noise sensitive at all?
    did they use a scope to diagnose your pet?
    can you feel the eardrums move when you talk or cough?
    are your ears sensitive to touch?
    thanks, lib

     
    Old 07-16-2004, 01:27 PM   #25
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    Re: for the undiagnosed dont forget these things as most drs dont bother

    Hi Lib,
    Do you have any feel for the numbers of people who have PET? Mayo made it sound very rare. Have your docs said anything about this?

    Is the endoscope the snake-like thing they put up your nose? If so, the doc who diagnosed me used that but there was no TV monitor.

    The whole weight loss and weight gain thingis bizarre. I am with you on the not being able to eat another donut. I may never eat another crispy creme ever again. What did you mean by the weight loss thing being sort of a myth? What I don't get is when these docs tell you to try to gain to help the ears, how could anyone gain weight inside their eustachian tubes? Maybe if you gained over 100 pounds. On the face of it, it sounds crazy.

    Did you have an MRI to look at your TMJ? I am really bummed out. Yesterday I went for the MRI and couldn't have it. They told me that the noise level inside the MRI machine is like very loud jackhammers. I said wait a minute, what would that do to my PET. They, of course, don't know because like everyone else they have never heard of PET. The oral surgeon who ordered the MRI thinks I have a very serious case, not just a case that only needs the splint. I guess the MRI shows everything - all the cartiledge thats affected and if the disc if slipped. So I talked to the oral surgeon's nurse and said I couldn't have it until the expert PET doc was asked if the noise could make my PET worse. A nurse called me today and told me they contacted the office of the expert doc and he is on vacation for 2 weeks. I guess a fax was sent saying that as far as they know, noise level will not worsen PET but if we wanted the expert's opinion we would have to wait the 2 weeks. I don't know what to do. It seems like I run into so many issues with how all my problems come together. It is so complicated. Meanwhile, I am in agony with the pain. Did your TMJ ever sound like breaking glass? Did you ever take an anti-inflammatory for TMJ? Can you tolerate any like tylenol, aspirin, advil with your PET? Between my ear problem and the TMJ, I am a mess. The combination of these two makes the thyroid cancer surgery look like a piece of cake.

    Do you hear clicking and popping in your ears? Is it the ears or the TMJ? As far as noise sensitivity, I have become more sensitive definitely. My bad ear feels sore when touched. I thought the movement I feel in my ears was from the body sounds but I'm not sure. Do you feel any relief in your ears when you first wake up?

    Do you know of any success cases from the expert doc?

    Did you ever consider that silicone tube thing? What did your hopkins doc think about that? It sounds worse than the expert doc's procedure.

    Did either of your docs tell you to drink lots of water?

    Also, on my symptom list I forgot facial tightness and tightness around the eyes but this is probably from the TMJ. Do you have this?

    That letter you received sounds great. Wish I could read it.

    Hey, one weird thing I'm thinking about . . . Could the procedure make the nose bigger? I suspect it could. This is not a happy thought. I have a mild deviated septum in my nose. This could be an issue. Maybe the deviated septum could get worse from the procedure. I hope I won't have to have surgery on that too.

    As for the diagnoses, the biggies are the glaucoma, PET, thyroid cancer. The others are - ndeviated nasal septum, onset of venous prominence of the hands and forehead, weight loss, facial dermatitis, hair loss, enchrondfroma, patella femoral syndrome, myofascial pain syndrome, ovarian cyst, anxiety, nonprodromal migraine. The vein issue happened literally overnight. I went to bed and the next morning blue veins had come out on my hands, forehead and under ny eyes. They are permanent and ugly. That night I had taken lexapro, an anti-anxiety med for the first time. The docs aren't sure why I had the vein problem. But I had cancer going on and things weren't right. I tried several anti-anxiety meds for about 3 weeks and then quit. I felt sick on all of them.

    My skin went crazy with rashes, welts and acne. I have a patch of hair right above the forehead and in the center where at least half the hairs are missing. They think it is female pattern baldness - a horror - but I'm not sure. Enchrondroma is probably something I was born with. I have an area in my upper right arm where bone is missing and there is funny cartilege instead. They are hoping there are no more of these that is why I am having the bone scan. Patella femoral syndrome is a knee problem. Myofascial pain is clenching the body and jaw from stress. The cyst is not a problem. Migraines were from stress I think.

    Here's the deal on the cancer. My neck felt full and not normal. Mayo did an ultrasound and found a nodule. They said these are totally common in the thyroid and 95 % of the time not cancer. I was in the 5 %. They did a needle biopsy - 10 needles full of tissue taken out, not fun. I had to have the whole thyroid out. Mine was a good case. Just one cancerous nodule, very small, not spread to the lymph nodes, stage 1 cancer and grade 1 (the best), also the best type of thyroid cancer, papillary. My chances are more than 99 % that I am permamnently cured. No radiation, no chemo. I have had trouble adjusting to the med. I have to take pills of the hormone the thyroid makes for the rest of my life. They say your body eventually adjusts to the med. I have a very large incision across my neck.

    The glaucoma is a bad deal. My eye doctor ahd me on a low-level steroid eyedrop for an allergy. I also had a genetic marker for developing glaucoma lin old age called pigmentary dispersion syndrome. The steroid in the eyedrop probably caused it to activate. I have permanent damage to the optic nerves. It is scary. Glaucoma tends to progress and take your vision. There are eye surgeries but you can only have 3 lasers in your lifetime. The results are not permanent, they buy you some time but they also have risks like vision loss. It is unusual to have glaucoma this young. It is better to get it when you are old and don't run out of options before you croak from something else.

    What happened to me is this. My first symptom was the ears. Then it was vision problems. Then my body just went nuts, almost trying to shut down. Every week or so there was something else wrong, like a failure mode. Before November, I was healthy and very active. Also, the frustrating thing is that Mayo tells me the thyroid cancer is not responsible for any of my symptoms. While I had the cancerous nodule, my throid was functioning normally, the hormone level was perfect. So they tell me none of these problems are related. I'm still not sure I believe Mayo. The way I figure it, it is possible that I can get all these problems fixed or manageable in time except the glaucoma. It may take me a year. On the glaucoma, I have to pray that mine does not progress and stays were it is. This can happen. Thank god for the expert doc for the ears. Mayo told me I was just going to have to live with it. The stress that gave me of knowing that coupled with having to live with the glaucoma was incredible. My husband found out about the expert doc's procedure from on-line research. So now I have hope.

    Take care,
    scp (Kathleen)

     
    Old 07-16-2004, 02:51 PM   #26
    lib
    Senior Veteran
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    Join Date: Nov 2003
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    lib HB Userlib HB User
    Re: for the undiagnosed dont forget these things as most drs dont bother

    Quote:
    Originally Posted by snapcracklepop
    Hi Lib,
    Do you have any feel for the numbers of people who have PET? Mayo made it sound very rare. Have your docs said anything about this?

    Is the endoscope the snake-like thing they put up your nose? If so, the doc who diagnosed me used that but there was no TV monitor.

    The whole weight loss and weight gain thingis bizarre. I am with you on the not being able to eat another donut. I may never eat another crispy creme ever again. What did you mean by the weight loss thing being sort of a myth? What I don't get is when these docs tell you to try to gain to help the ears, how could anyone gain weight inside their eustachian tubes? Maybe if you gained over 100 pounds. On the face of it, it sounds crazy.

    Did you have an MRI to look at your TMJ? I am really bummed out. Yesterday I went for the MRI and couldn't have it. They told me that the noise level inside the MRI machine is like very loud jackhammers. I said wait a minute, what would that do to my PET. They, of course, don't know because like everyone else they have never heard of PET. The oral surgeon who ordered the MRI thinks I have a very serious case, not just a case that only needs the splint. I guess the MRI shows everything - all the cartiledge thats affected and if the disc if slipped. So I talked to the oral surgeon's nurse and said I couldn't have it until the expert PET doc was asked if the noise could make my PET worse. A nurse called me today and told me they contacted the office of the expert doc and he is on vacation for 2 weeks. I guess a fax was sent saying that as far as they know, noise level will not worsen PET but if we wanted the expert's opinion we would have to wait the 2 weeks. I don't know what to do. It seems like I run into so many issues with how all my problems come together. It is so complicated. Meanwhile, I am in agony with the pain. Did your TMJ ever sound like breaking glass? Did you ever take an anti-inflammatory for TMJ? Can you tolerate any like tylenol, aspirin, advil with your PET? Between my ear problem and the TMJ, I am a mess. The combination of these two makes the thyroid cancer surgery look like a piece of cake.

    Do you hear clicking and popping in your ears? Is it the ears or the TMJ? As far as noise sensitivity, I have become more sensitive definitely. My bad ear feels sore when touched. I thought the movement I feel in my ears was from the body sounds but I'm not sure. Do you feel any relief in your ears when you first wake up?

    Do you know of any success cases from the expert doc?







    Did you ever consider that silicone tube thing? What did your hopkins doc think about that? It sounds worse than the expert doc's procedure.

    Did either of your docs tell you to drink lots of water?

    Also, on my symptom list I forgot facial tightness and tightness around the eyes but this is probably from the TMJ. Do you have this?

    That letter you received sounds great. Wish I could read it.

    Hey, one weird thing I'm thinking about . . . Could the procedure make the nose bigger? I suspect it could. This is not a happy thought. I have a mild deviated septum in my nose. This could be an issue. Maybe the deviated septum could get worse from the procedure. I hope I won't have to have surgery on that too.

    As for the diagnoses, the biggies are the glaucoma, PET, thyroid cancer. The others are - ndeviated nasal septum, onset of venous prominence of the hands and forehead, weight loss, facial dermatitis, hair loss, enchrondfroma, patella femoral syndrome, myofascial pain syndrome, ovarian cyst, anxiety, nonprodromal migraine. The vein issue happened literally overnight. I went to bed and the next morning blue veins had come out on my hands, forehead and under ny eyes. They are permanent and ugly. That night I had taken lexapro, an anti-anxiety med for the first time. The docs aren't sure why I had the vein problem. But I had cancer going on and things weren't right. I tried several anti-anxiety meds for about 3 weeks and then quit. I felt sick on all of them.

    My skin went crazy with rashes, welts and acne. I have a patch of hair right above the forehead and in the center where at least half the hairs are missing. They think it is female pattern baldness - a horror - but I'm not sure. Enchrondroma is probably something I was born with. I have an area in my upper right arm where bone is missing and there is funny cartilege instead. They are hoping there are no more of these that is why I am having the bone scan. Patella femoral syndrome is a knee problem. Myofascial pain is clenching the body and jaw from stress. The cyst is not a problem. Migraines were from stress I think.

    Here's the deal on the cancer. My neck felt full and not normal. Mayo did an ultrasound and found a nodule. They said these are totally common in the thyroid and 95 % of the time not cancer. I was in the 5 %. They did a needle biopsy - 10 needles full of tissue taken out, not fun. I had to have the whole thyroid out. Mine was a good case. Just one cancerous nodule, very small, not spread to the lymph nodes, stage 1 cancer and grade 1 (the best), also the best type of thyroid cancer, papillary. My chances are more than 99 % that I am permamnently cured. No radiation, no chemo. I have had trouble adjusting to the med. I have to take pills of the hormone the thyroid makes for the rest of my life. eyedrop for an allergy. I also had a genetic marker for developing glaucoma lin old age called pigmentary dispersion syndrome. The steroid in the eyedrop probably caused it to activate. I have permanent damage to the optic nerves. It is scary. Glaucoma tends to progress and take your vision. Tare old and don't run out








    of options before you croak from something else.

    What happened to me is this. My first symptom was the ears. Then it was vision problems. Then my body just went nuts, almost trying to shut down. Every week or so there was something else wrong, like a failure mode. Before November, I was healthy and very active. Also, the frustrating thing is that Mayo tells me the thyroid cancer is not responsible for any of my symptoms. While I had the cancerous nodule, my throid was functioning normally, the hormone level was perfect. So they tell me none of these problems are related. I'm still not sure I believe Mayo. The way I figure it, it is possible that I can get all these problems fixed or manageable in time except the glaucoma. It may take me a year. On the glaucoma, I have to pray that mine does not progress and stays were it is. This can happen. Thank god for the expert doc for the ears. Mayo told me I was just going to have to live with it. The stress that gave me of knowing that coupled with having to live with the glaucoma was incredible. My husband found out about the expert doc's procedure from on-line research. So now I have hope.

    Take care,
    scp (Kathleen)
    hi kathleen,
    geeezzzz, you really have been thru the ringer, i feel so bad. i had an inner ear virus and this its been a mess so i do know how you feel.
    how did your husband find expert doc, i am assuming we are talking about poe.
    i have discovered on my own that pet is not that rare, people go misdiagnosed for ever. most doctors dont even know about it, so i think its higher than anyone knows, a lot of patients are told its all in there head.
    one thing have you been checked for autoimmune disease? that can be connected to pet.
    my tmj does not bother me, so i think if someone had caught the pet first i would have never known, and would have saved a lot of money.
    i had an mri, it wont hurt the pet, and the expert will probably tell you that also. so use ear plugs and breath thru your mouth.
    i have not needed to take any tylenol or anything like that so i dont know the answer to that.
    yes i have clicking popping snapping, moving eardrums, voice reverberation you name it, it is in my ears.
    i have symptoms when i get up its always there, always. i am not lucky like some.
    i only know that this procedure is new but seems to be working well, i dont know any numbers but what choice do we have.
    yes i have considered the tubbing , only because of the dreadful wait, but both drs dont think its a good idea.
    no, i was never told to drink lots of water, but i drink plenty of water and fluids.
    no the surgery is not going to make the nose bigger but if you have a deviated septum it may need to be corrected first because the endoscope wont fit, i know a guy that is having surgery but had to get the nose straight first, so if you want to be productive in the wait go to see if a 4mm scope will fit. have you tried the nose spray yet? i know it has worked on some people, i was praying thats all i would need but it did not work for me.
    i had my preop today and passed, the great thing i found out was in my chart at my reg drs office was a letter from the expert to my j.h. dr to my reg, no other drs had ever sent my reg dr anything and i went to 7 others before i found the two best ever. anyway i read it and i was just amazed at how much i was listened to, i knew j.h. dr always listened to every word and the expert just the same. as i said if all drs were like my guys this world would be such a better place. i think i have the 2 best ever, i know i am lucky to have found these guys and i think they are going to get me thru, and basically save my life. i love them both!
    i wish for you the same and if you have to keep going till you find the right one locally, maybe you could ask dr poe when you see him if he knows anyone locally, i would trust anything he suggests. to bad dr. carey is not close to you also.
    so tell me your exact ear symptoms.
    hang in there! lib

     
    Old 07-16-2004, 06:30 PM   #27
    marjs_life
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    marjs_life HB User
    Re: for the undiagnosed dont forget these things as most drs dont bother

    can you tell me what the eustachian tubes can cause as my dr says they are only hair width wide and only cause blocked muffled hearing and yet i get swollen throat cant swallow when they swell and numerous other problems
    marj

     
    Old 07-17-2004, 05:29 AM   #28
    lib
    Senior Veteran
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    Join Date: Nov 2003
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    lib HB Userlib HB User
    Re: for the undiagnosed dont forget these things as most drs dont bother

    hi,
    i only know they can either be to closed or to open, i am not sure how they would cause throat problems, it sounds like something in your throat is causing ear problems. i would find a new doc if yours cant figure it out.lib

     
    Old 07-17-2004, 12:36 PM   #29
    snapcracklepop
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    Re: for the undiagnosed dont forget these things as most drs dont bother

    Hi Lib,
    I'm not sure how my husband found Poe. Will (husband) is a software developer so on-line research comes easy.

    Thanks for all the info. Good idea about checking out the size of the endoscope with the deviated septum. I hope I don't need yet another surgery!

    Yes, I was checked for auto-immune diseases, turned up nothing. I don't get how PET can be associated with auto-immune. Is the process of PET like auto-immune, the body attacking itself? Also, a friend suggested that perhaps we were born with some defect in the fat pads that finally fully activated to destroy the tissue. What do you think?

    What was your MRI for? When did you have it? What did it show?

    Any feel for how new the procedure is and how many the expert has done?

    I haven't tried the nose drops. It didn't really sound like there was much chance of them working. Also, my mother took Premarin for hormone replacement therapy and every hair on her head fell out. So I am afraid to try it. I already have some missing hair, don't need to make it worse.

    What did you think of my concerns with botox? Ever heard of this being associated with PET? My sister got me using it. She is a fashionista and up on the latest hair, makeup, etc. The stuff works, but I think it's toxic to some people's bodies.

    I received a letter from Poe. It talks about patchulous and the procedure. Sounds very good.

    Thanks, SCP (Kathleen)

     
    Old 07-17-2004, 01:12 PM   #30
    lib
    Senior Veteran
    (female)
     
    Join Date: Nov 2003
    Posts: 850
    lib HB Userlib HB User
    Re: for the undiagnosed dont forget these things as most drs dont bother

    Quote:
    Originally Posted by snapcracklepop
    Hi Lib,
    I'm not sure how my husband found Poe. Will (husband) is a software developer so on-line research comes easy.

    Thanks for all the info. Good idea about checking out the size of the endoscope with the deviated septum. I hope I don't need yet another surgery!

    Yes, I was checked for auto-immune diseases, turned up nothing. I don't get how PET can be associated with auto-immune. Is the process of PET like auto-immune, the body attacking itself? Also, a friend suggested that perhaps we were born with some defect in the fat pads that finally fully activated to destroy the tissue. What do you think?

    What was your MRI for? When did you have it? What did it show?

    Any feel for how new the procedure is and how many the expert has done?

    I haven't tried the nose drops. It didn't really sound like there was much chance of them working. Also, my mother took Premarin for hormone replacement therapy and every hair on her head fell out. So I am afraid to try it. I already have some missing hair, don't need to make it worse.

    What did you think of my concerns with botox? Ever heard of this being associated with PET? My sister got me using it. She is a fashionista and up on the latest hair, makeup, etc. The stuff works, but I think it's toxic to some people's bodies.

    I received a letter from Poe. It talks about patchulous and the procedure. Sounds very good.

    Thanks, SCP (Kathleen)
    hi kathleen,
    first off how did you get a letter from poe that fast and second what did it say?
    i dont think botox in the face would do it, i am not sure but ask the expert he would know.
    some autoimmune does play a role like rheumatoid disease.
    you know i dont know if we were or were not born with the defects, i dont beleive i was i think like the expert said, the chain of events opened them.
    mri was for dizzy in late summer, showed a cyst in sinus thats it, but i did not have pet symptoms then, they think i had a inner ear virus. thats what the expert said and i am sticking to his dx.
    no numbers on the procedure it is new,but he is very confidant and like i said what choice do we have, i know if i continue to be miserable dr. poe will be there to try, and ultimatley close them if thats what i want. there is the tuboplasty at shea also, i dont know about that one.
    so do tell about the letter, hes the best at letters. so what are your exact pet symptoms?
    lib
    and after a very bad day my daughter wants to do everything we use to, and i cant mentally take another day, i think about going to shea clinic or begging for the teflon injections, just trying to hang in there, its very hard.
    also do you have any tinnitus?

    Last edited by lib; 07-18-2004 at 07:04 AM.

     
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