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I'm So Sick of Having Surgeries...

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  • #21
    How about joining one of the various online horse games? That's what I did when I hurt my back.
    Horse Show Names Free name website with over 6200 names. Want to add? PM me!

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    • #22
      Horse Isle offers a super get away with 2 options!
      Snowflake if you join, I know several COTHers play! I have the same username over there.

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      • #23
        I'm on there as Warriorbard.

        Sorry for the hijack, Snowflake!
        Horse Show Names Free name website with over 6200 names. Want to add? PM me!

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        • Original Poster

          #24
          Well, confirmation came today that I'm not having surgery. Pre-op testing showed that what we thought this was - another bone infection - it is not. The significant bone changes on the CT scan didn't show on the MRI so we don't know what that was all about. Based on my symptoms and pain patterns it seems that I have atypical trigeminal neuralgia likely caused by the multitude of past surgeries doing damage to my facial nerve.

          While I'm happy that I don't need to have another surgery, the idea of having a chronic, painful condition isn't fun either. I have an appointment this coming Monday with a neurologist to discuss what our options are. Seems like conservative treatment is epilepsy meds and/or anti-depressants. There may be surgery if they can find scarring around a nerve branch. I think I may try to see if acupuncture helps. I had it when I had a massive kidney infection a few years ago and I loved it. It really helped with the pain.

          Has anyone had a diagnosis like this? What did you choose to do that helped?

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          • #25
            Find a REALLY good pain specialist. No need for surgery is great, but I'm so sorry to hear it's not something that has a quick fix

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            • #26
              I'm glad you don't have to go through another surgery, but very sorry you have chronic pain from nerve damage. My husband has that from a bad knee replacement. It's made worse by normal pain from instability.

              So far we have not found a solution although we have not tried accupuncture yet for lack of a good accupuncturist in our area and his stubborness and loss of faith in all Doctors and medicine. If I were you I would go ahead and pursue that avenue especially since you've had good luck with it in the past.
              ::With age comes wisdom. Apparently "wisdom" weighs about 40 pounds.::

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              • Original Poster

                #27
                Originally posted by Simkie View Post
                Find a REALLY good pain specialist. No need for surgery is great, but I'm so sorry to hear it's not something that has a quick fix
                I'm really leery of Pain Specialists. I went with my mom to some when she was in her cancer treatment and they were like massive cattle calls and they treated my mom like a drug seeker. We kept switching offices to find one that did not have a 5 acre waiting room stuffed full of people, had you waiting 2 hours past your appointment time and with a doctor who actually listened (or spoke English). It was such a disheartening experience then because my mom wasn't an addict, didn't want to take narcotics and wanted help finding a pain management protocol that would work for her long term. We never did find a doctor that could do that.

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                • Original Poster

                  #28
                  Originally posted by SmartAlex View Post
                  I'm glad you don't have to go through another surgery, but very sorry you have chronic pain from nerve damage. My husband has that from a bad knee replacement. It's made worse by normal pain from instability.

                  So far we have not found a solution although we have not tried accupuncture yet for lack of a good accupuncturist in our area and his stubborness and loss of faith in all Doctors and medicine. If I were you I would go ahead and pursue that avenue especially since you've had good luck with it in the past.
                  Encourage your hubby to try acupuncture if you can find a specialist in your area. The relief didn't come until my 2nd treatment, but it was massive. The whole procedure is very relaxing and if it doesn't work for him for the pain, the de-stressing might help him.

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                  • #29
                    damn. i have no suggestions, but am jingling nonetheless.
                    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
                    Today I will be happier than a bird with a french fry.

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                    • Original Poster

                      #30
                      So today was my consult with the neuro specialist to discuss the ENTs diagnosis of neuralgia for the pain in my face. What a frustrating experience!

                      First off, the guy was Asian and spoke broken English. He didn’t let me talk at all. Didn’t listen to me about my history and past work ups. Just came in the room and within 30 seconds said “You have migraine. You female between 15 and 45. It is migraine. No such thing as sinus pain.” Ummm… No. Before having my first surgery I had a neuro workup and we tried different headache medicines – Maxalt, phrenilin, midrin – none of them worked. They didn’t even touch the pain I’m having. If it were migraine pain, the drugs would have done something to quell it.

                      I have pain in my face every day. It’s not a headache. It’s pain in my face. Most days, I can function though it. It does not make me nauseous. I do not have light sensitivity. He gave me some sample migraine drugs. I cannot take it more than 3x/week up to 9x/month. Even if it were migraine, how is that supposed to help me when I have pain EVERY DAY? I’m angry and frustrated. I walked out of the office crying.

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                      • #31
                        Originally posted by Snowflake View Post
                        First off, the guy was Asian and spoke broken English. He didn’t let me talk at all. Didn’t listen to me about my history and past work ups. Just came in the room and within 30 seconds said “You have migraine. You female between 15 and 45. It is migraine. No such thing as sinus pain.” Ummm… No.
                        I'm sorry.

                        My husband had an appointment like that over the winter. He actually took me with him so I could see what he has to deal with. Good thing too, because I ended up having to translate. My husband sucks at understanding accents to the point I can't even watch British movies with him .

                        Anyway... the appointment was ordered by worker's comp to assess the condition of his knee. The Doctor (and I use the term lightly) Never.Touched.His.Knee. Never.LOOKED.At.His.Knee. Entered the room before he removed his jeans to get into a gown. Refused to allow him to get into a gown. Asked him to try to walk across the floor on his heels.

                        Dismissed.

                        Now I've read transcripts from worker's comp doctors from his previous assessments, and I know what a good orthopedic exam entails.

                        Sometimes the condition of the American healthcare system makes me want to commit hari kari.
                        ::With age comes wisdom. Apparently "wisdom" weighs about 40 pounds.::

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                        • #32
                          Oh, Snowflake, I'm so sorry you had such a terrible experience. Can you get to a hospital like Mayo or Hopkins or Cedars-Sinai or something along those lines?

                          Your pain is real and important and you deserve a doctor who will listen to you and look at your imaging studies and come up with a course of treatment, rather than brush you off and not give a shit.

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