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  • RSD of the Ear?!

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    Old 05-03-2004, 01:38 PM   #1
    mirn
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    Unhappy RSD of the Ear?!

    Anyone out there have or heard about someone who had RSD of their ear? About a month ago i was diagnosed of RSD of my left ear. It took many many visits to different doctors before finally a neurologist told me it's RSD. Anyways, I had 4 blocks but i still feel I would say 80 - 90% of the original pain. Since there is no physical therapy for the ear, i was wondering if anyone knows of treatments that worked for this body part. I'm on the highest dose of Amitriptyline (150mg), 80mg of propranolol twice a day to control the flare ups (which are really bad when they happen, usually from an external stimulus, change from cold to warm temperature, or sun rays. The ear turns bright red and painful) My neurologist said since it seems like I had RSD for several years it's going to be hard to treat them with nerve blocks, and she said they might have to use a procedure where I would lose feeling to the left side of my face including the left part of the tongue and lip to totally knock the feeling out, or a permanent nerve block i think.

    I would really like to avoid this, but it's hard for me to be outside for more than 10 minues during the summer without the ear flaring up and becoming painful. The ear is under constant pain but worse during falre ups. Any comments, suggestions, recommendations would be greatly appreciated of what you think might help my unique case. I couldn't really find anything on the internet about RSD of the ear.

    Thank You

     
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    Old 05-03-2004, 06:32 PM   #2
    sharon1030
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    Hi mirn,

    Welcome to the board. I'm sorry to say that I don't have any information to help you with your question. Maybe someone else here will. Have you tried to research it on the net? Sorry I can't help.

    Sharon

     
    Old 05-03-2004, 10:24 PM   #3
    mirn
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    Re: RSD of the Ear?!

    yes i've checked a lot on the internet, searching "Reflex Sympathetic Dystrophy of the ear" in google showed one result with no info, I tried www.boardreader.com which is a message board search engine and couldn't find anything there so I keep looking

    Thanks

     
    Old 05-05-2004, 02:55 PM   #4
    Horsie Nutt
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    Re: RSD of the Ear?!

    Hi Mirn. I haven't "met" anyone with rsd of the ear, but I've read that it can affect pretty much anywhere on the body, and from reading about rsd and having it myself and knowing how it does what it wants when it wants and does crazy things that don't have any rhyme or reason to them that don't make any sense, I wouldn't be surprised.

    From what you described, it sounds like the neurologist wants to cut some nerves to try to stop the pain. If you have RSD, cutting nerves won't stop the pain, and the surgery could make the rsd spread.

    Have you ever seen a pain management specialist? It might not be a bad idea to to to find an anesthesiologist that specializes in rsd. That surgery sounds drastic to say the least, and your neurologist should know that cutting the nerve won't help in cases of people who have rsd. Believe me, if it were that simple, most of us would not be here.

    The best advice I can give you is to find a pain management specialist, and not to have the surgery, but I wish I could help you more. Please keep us posted on how you're doing and come back more to talk.

    Take care,
    Cathy

     
    Old 05-05-2004, 07:34 PM   #5
    kimmief
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    Re: RSD of the Ear?!

    Hi, of all the research I've done I have never heard of RSD of the ear either. I too am going to keep looking to see what I can find. I hope that you find some relief but I agree with Cathy, all that I know about this disease shows that it would be worse if you followed your physicians orders. You will make the right decision, just make sure you are corrrectly informed. I think you are certainly in the right place for a start. Take care and I hope you find some form of comfort soon.

    Kim

     
    Old 05-07-2004, 09:04 PM   #6
    mirn
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    Re: RSD of the Ear?!

    Thanks for the replies, you people are so helpful. Well I have good news, Wednesday I went to this other PM, and he agree to put me on 18 days of prednisone, starting with 30mg twice a day, and then going down slowly. He also increased me to 150mg of amitriptyline twice daily. When I take the amitriptyline in the morning it makes me so tried that i've taken 3-4 hour naps during the day. But the good news that the burning kind of pain is pretty much gone, now it's a different kind of feeling, more deep sort of, the kind of feeling of muscles after a workout, which is heaven compared to the burning feeling I've had for many many months if not years. So I don't know if it's the 4 nerve blocks kicking in or the predinsone and increased amitriptyline since Wednesday May 5th, or the combination of nerve blocks + medicine, but it definitely feels better and the swelling of the ear went down a little, and it's not all red like it's been most of the time. Hopefully this decreased pain will last, but I did have one almost pain free day before so I'm not keeping my hopes way up.

    Thanks

     
    Old 05-07-2004, 09:40 PM   #7
    Jewel2
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    Re: RSD of the Ear?!

    That's good news about the decreased burning. I really hope it is done for good!

    I just finished 2 weeks of oral prednisone and it really knocked down the inflammation. The first week on it was absolutely killer on my body as a whole, but it was worth it. I would like to do another 2 weeks after my body recovers. I think there is more to be accomplished. I hope you have the same success.

    Please let us know how you are coming along.

    Best wishes,
    Julie

     
    Old 05-08-2004, 06:35 PM   #8
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    Hi,

    That's really great news. I hope your progress continues. I understand not wanting to get your hopes too high. It's better to not expect it and be surprised than the other way around. Good luck.

    Sharon

     
    Old 05-08-2004, 08:02 PM   #9
    Horsie Nutt
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    Re: RSD of the Ear?!

    Mirn, that is terrific news! I'll keep you in my prayers and pray that the burning does not come back, and that your progress continues. It is so nice to hear good news around here.

    Please keep us posted.
    Cathy

     
    Old 05-09-2004, 05:30 PM   #10
    sillygirl29
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    Re: RSD of the Ear?!

    Hi Mirn. I am new to this whole RSD thing myself, but I also have degenerative joint disease in both of my jaws. In fact, I had surgery 4 years ago to clean out the joints. The surgery left the right side of my face, neck, and head numb for about a month due to nerve irritation. It was not a pleasant feeling, but it kept the severe post-op pain to a minimum (for which I was extremely grateful). I would definetely look for a second opinion before having that drastic of a surgery done. I can only guess that you are talking about the same nerve. I believe it is also the same nerve involved in Bell's Palsy. I hope this helps.

     
    Old 05-09-2004, 08:27 PM   #11
    Horsie Nutt
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    Re: RSD of the Ear?!

    Sillygirl, have you ever looked into prolotherapy to strengthen the tendons and ligaments aroind your temperal mandibular joints? It might be worth looking into if you can find a good doc to do it.

    Cathy

     
    Old 05-10-2004, 07:01 PM   #12
    sillygirl29
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    Re: RSD of the Ear?!

    Hi Cathy.

    I have never heard of prolotherapy. What is it? Basically, I have a degenerative form of arthritis in both joints. The right side was so bad and had so much scar tissue built up in the joint that my mouth locked shut and I was eating through a straw for about 8 months before I finally found one of the nation's best surgeons (one of the founders for the type of surgery I had) in Chicago to go in and do something. I can completely understand everyone's frustrations about not finding a doctor to be able to help. I bet I had seen over 20 different docs and each one told me that it was all in my head and that I could open my mouth, but I just didn't want to. Yeah right because eating pureed food is just sooooo appetizing. My jaw is doing as well as can be expected for bone on bone and all the feeling has come back. I just have to watch the chewy foods and it bothers me when the weather changes. Nobody can understand how fortunate they are to be able to sit down and eat a normal meal until they can't do it. Definitely let me know what the prolotherapy is about though.

     
    Old 05-15-2004, 04:47 AM   #13
    mirn
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    Arrow Re: RSD of the Ear?!

    Just wanted to update on my condition since I've been on prednisone for about 9 days now. I still feel relief from the burning pain, but I still feel some of the burning pain, but overall it's manageable now. I saw my PM and she wants to do a local steroid injection if the oral pills that I'm taking now don't help. I don't think it's directly to the ear but very close to it and she said it might go through the bottom lobe of the ear. What are some bad things about this kind of injection? If I still feel 50% of the original pain, should I still do this injection?


    Thanks

     
    Old 05-15-2004, 05:09 AM   #14
    Jewel2
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    Re: RSD of the Ear?!

    Hi,
    I have never had a steroid injection so I can't answer from personal experience. I do know a few people with RSD who had them and it was a bad experience, triggering a flare-up.

    I'm very happy that the steroids are helping you. They helped me, too.

    Best wishes for a complete recovery!
    Julie

     
    Old 05-15-2004, 03:02 PM   #15
    Horsie Nutt
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    Re: RSD of the Ear?!

    Hey Sillygirl. Owie! I had TMJ probels when I was 19 and I remember that pain so clearly *still*, and I'm 39 years old now. The headaches were horrible from it too! I had my teeth equilibrated, and that solved the problem for me. I can only imagine what you have and still are going through. I am so sorry. Doc's can be idiots can't they. Sheesh.

    Prolotherapy is where they inject dextrose into a tendon or ligament. The process produces a non-surgical tendon, ligament and joint reconstruction by taking advantage of the body's own healing methods.
    Injecting the ligament or tendon causes a localized inflammation in these weak areas which then increases the blood supply and flow of nutrients and stimulates the tissue to repair itself. It causes the tendons and/or ligaments to become stronger in the end. It is a series of injections, and unfortunately, it does cause more pain before it heals the pain. It might sound barbaric, but ligaments and tendons do not heal well on their own because of their lack of blood supply. The injection therapy works through the body's own healing mechanisms to rebuild the weakened ligaments, tendons and joints. The controlled irritation of the injection technique causes a dilation of the vessels in the treated area and this aids the accumulation of the fibroblasts which produce the new protein tissue. Persons that may benefit from the therapy frequently have one or more of the following symptoms or conditions:
    **arthritis in any joint in the body
    **any popping, grinding, clicking, or snapping in a joint (all of these are signs of joint loosening and instability)
    **any joint which is only partially helped by osteopathic or chiropractic adjustments/manipulations (or when adjustments or manipulations help but don't hold) .
    **manipulation frequently makes big improvements quickly. If prolonged manipulation is necessary this is an indication of joint instability and injection reconstructive therapy may be helpful.
    **any musculo-skeletal problem which has failed with surgery and other methods
    **any condition which is helped by a brace, splint, crutch, walker, lift or wheelchair. People that need these aids frequently have weakened or lax joints.
    **deep aching which is alleviated some by constantly changing positions
    **symptoms of decreased strength and endurance
    **increased pain with increased activity (swimming, biking and walking may be exceptions)
    **various conditions such as osteoporosis with compression fractures, muscular dystrophy, multiple sclerosis and spinal defects such as scoliosis and slipped spine
    **any joint which swells chronically may be a candidate for resolution with this therapy. Swelling may be an indication of chronic friction from instability
    **any joint, tendon, ligament, cartilage, for which cortisone, Indocin, Nalfon, Clinoril, Feldene, Motrin or other anti-inflammatory drugs has been used may respond to reconstructive joint injection therapy
    conditions like carpal tunnel syndrome, rotator cuff tears and temporal mandibular joint dysfunction may also respond to joint reconstruction injection therapy because joint, ligament, tendon, disc and cartilage weakening are involved


    Hi Mirn, I am glad that you have found some relief, though I wish it was more than 50%. Having injections in your RSD site can really trigger *bad* flare-ups (it happened to me before), and I have read on several sites that it is not recommened that you do inject RSD sites.

    However, I am battling tendonitis in my right elbow, and it is aggravating the RSD in that arm and hand to the point that it is hindering what I can and can not do more than before. I did let my doc's PA inject me with steroids through a very small needle. It did help for a few days. I did too much too soon and screwed it up again. I had another injection after I banged my elbow on the door of my truck while getting out of it on my way to go see my doc. I begged him to put lots of marcaine in it as my pain level was way beyond a 10 at the time. It didn't help for long, but it did stop the pain, but it still hurt when the local wore off (but not as bad as it did before the injection thank heavens!).

    I am also considering prolotherapy to see if it will heal the tendonitis. It is aggravating my RSD badly, and is really hindering what I usedtacould do (that's a friend of mine's word - used-ta-could, lol). Typing even irritates it. If the prolotherapy causes a bad flare-up, hopefully I can have an "emergency" epidural infusion to stop the pain. I need to discuss it more with my doc, and I see him about it on Thursday.

    I can not say that if you have a steroid injection that it will help you or not. It might , or it might make your pain worse. I have had an injection that caused a BAD flare-up before. OMG it hurt and it wasn't fun at all!! That's why I had my first epidural infusion. Whether or not to have an injection or anything that might cause a flare-up or whatever is a personal choice that only that one person can make, based upon their circumstances and choices. It is never easy to make those decisions. Sometimes you regret making them, sometimes you don't. I wish I could help you more, but I really can't. I do wish you the best of luck in which ever you choose.

    I'll be keeping you in my prayers.
    Cathy

     
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