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Patulous???

Posted , 6 users are following.

kellyzboyz
kellyzboyz

Wondering if anyone struggles with Patulous Eustachianal Tube Dysfunction?

0 likes, 10 replies

10 Replies

  • caryl73160
    caryl73160 kellyzboyz

    Posted

    Sure do.  It's an awful thing, and one that the average person has absolutely no comprehension of.  There is some interesting info in the forum on this site.  
    • kellyzboyz
      kellyzboyz caryl73160

      Posted

      From everything my son has told me about it, it sounds pretty awful. I hate seeing him struggle, he's been through so much already. He decided to get in shape and lost 100lbs. in less than a year. That's when his Patulous began. He is also hearing impaired on that side. Do you know what brought on your Patulous? We are looking for an ENT that will work with him in the event that he's in the middle a semester or doing clinicals in nursing school. If you know of anyone in the NJ/PA area, I would really appreciate anyone you might be able to recommend. He was followed at Children's Hospital of Philadelphia but aged out. What has worked best for you? He's going to try a t-tube in a few weeks, hopefully it will stay in longer! The surgeon he is seeing this time around said Dr. Poe from Boston is the guru in Patulous. I wish you the best, there is another treatment in the naking
    • kellyzboyz
      kellyzboyz

      Posted

      oops, in the making. Hopefully it will come out soon!
  • caryl73160
    caryl73160 kellyzboyz

    Posted

    So sorry to hear about your son.  I live in New Zealand so can't help you with referrals unfortunately, but like you say, and judging from others comments, Dr. Poe in Boston is the master for ear problems.  The weight loss you mention your son had may well be a contributing factor the PET.  Personally, I don't agree with the t-tubes or grommets unless there is fluid behind the ear drum.  I had grommets put in almost a year ago and it definitely made the PET far worse.  Since having one grommet removed the other week and getting specific massage treatment on neck/ear muscles I've noticed a huge improvement.  I do suggest you go in to the patulous eustachian tube forum on this site as hopefully you will find someone in your country/area that may be able to guide you further. I so feel for your son as it is a horrible thing to contend with on a daily basis.  He obviously has one very special mum that cares.  I wish you all the best.

     

    • kellyzboyz
      kellyzboyz caryl73160

      Posted

      Thank you for the kind words, I try to help as much as I can. So massage helped with your Patulous, that is an idea, never thought to try that! He has what's called Klippel Feil Syndrome, some of the ways it affected him...cleft palate, a-symetry of the face, fused vertebrae in his neck which prevents him from being able to turn his head and the hearing impairment in his right ear. So the anatomy of his ear is a bit different from others, making it difficult for the surgeon to get the tube in. He is always reading hoping for a permanent fix for this problem. He never had an ear infection as a baby, however, due to his cleft palate, tubes were automatically put in his ear as he was more prone to ear infections. I'm now learning that may have been a contributing factor. I've been going to the forum for hearing disorders and you are the only person that responded when I brought up Patulous
  • Olizzieo
    Olizzieo kellyzboyz

    Posted

    No but I deal with clients that do so please feel free to ask any questions.
  • shiannejustice1
    shiannejustice1 kellyzboyz

    Posted

    Yes it is terrible. There is a Facebook page for it and there is so much support on there. There is a public one its just called patulous Eustachian tubes and the. A private one called PET patulous Eustachian tubes. There are a lot of great ideas to try and help with it. You should definitely check it out.
    • kellyzboyz
      kellyzboyz shiannejustice1

      Posted

      Thank you Shiannejustice1! I'll definately check out the groups! My son's biggest fear is that the tube comes out while he's in school or doing clinicals. Then it's usually atleast a six week period until the surgeon can get him in for another tube. If he has to do a presentation the instuctors just don't seem to understand how difficult this disorder is. Too bad there isn't something that they can listen to so that they could get a better understanding of how hard it is just to follow along with discussions in class. Can you tell me what the name of the group is here for specifically Patulous? I've just been going to hearing disorders. Thanks again for all the helpful information!!! You don't by any chance know of a good ENT in the NJ/PA area? Just figured I'd give it a shot, lol!
  • john45238
    john45238 kellyzboyz

    Posted

    My girlfriend does. Just started a month ago. First I thought she was congested, but it's definitely the opposite. Her tubes are just staying too open. Putting her head between her knees while sitting completely eliminates the problem but once she returns to the normal position, it comes back. Tonight I'm starting her on this neck exercise thing I saw on YouTube that has helped a lot of people. Might take a week or so to see any results, though.

  • karen84319
    karen84319 kellyzboyz

    Posted

    My daughter suffers from this.  Is there anyone you know of in NZ that recognises this condition and treats it?  My daughter is currently living in Auckland.  Would appreciate any advice.

    Thanks

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