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Tiredofdoctors - Lynne

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Thanks Patti, but this is normal for me. A 5 or 6 on the pain scale I can live with, but a 7, 8 or 9 requires my pain meds. My weekly chiro visit helps.

But, I felt so bad that here Lynne calls with some good news and a dead monkey answers the phone. The phone call was short and I went back to sleep thanking God and thinking about the power of prayer.

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Ooh, that's good news! :) I have no idea what our time difference is...maybe the doctors appointment has been already. I'll be rooting for you over here, though!

Pauliina

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LIFE IS GOOD!!!!!!!!!!!!!

I have an artery that is a little looped too much, but not enough to require surgery. There is NO aneurysm -- it was part of the loops!!!!!

The symptoms that occur when I flex my chin to chest are apparently due to the vertebral artery in my neck being kinked, and then occluded with the flexion. He feels that the change, and the "kink" probably happened during one of my harder falls. I've had several, but Dave and I could easily list four last night that were pretty significant. One, in particular, was when I fell forward off the porch and took a header into the grass. Another one was the calla lilies . . . I think we all remember that!!! :blink: Stupid things -- only three came up last year, and none this year. Hmmmmmph. So, there is a list . . . . . . . .

The difficulty with trying to correct this is multifold. 1) I have a bleeding disorder that has caused me to bleed excessively with each delivery, after and during surgeries, miscarriages, etc. It's because of the Ehler's-Danlos. 2) The angiogram would require opening the femoral artery -- usually not a problem because I've had a cardiac cath and it wasn't bad -- just had to stay lying down with compression over it for a little longer than normal. Evidently, though, because it is active, it would require me to be standing (?) and he said he just isn't comfortable with that 3) The surgery is pretty risky -- it's not the usual surgery and takes about twice the time that you would think a "normal" neck surgery would take. It also has only a 50/50 chance of correcting the problem permanently.

I told him that I wouldn't have the surgery if it was 50/50 even if I DIDN'T have a bleeding disorder! He agreed. So, it was kind of "I went to the doctor and told him it hurts when I do this. He said, 'Don't do that.' " EXACTLY WHAT I WANTED TO HEAR!!! All I need to do is set up things in my house so that I am not positioning myself with my head bent down. Granted, I'm making it sound as though it's going to be the easiest thing in the world, and realistically it's going to be a little harder than that. HOWEVER ---- I don't care -- I'll do that! And, my friend Jeanette, who is an Occupational Therapist had a very "pointed" conversation with me and convinced me that I AM worthy of a home makeover. I told her that everyone who had received one had done something outstanding, and I didn't think that I had. Let's just say I got the message LOUD and clear.

I was really comforted by the nurse-practitioner who did the majority of my visit. She spent at least one hour with me. She said that she strongly felt that the bizarre pupil response that I have is due to the autonomic dysfunction. She explained so many things to me that had been ignored by the other doctor. I was really impressed with her. She has been treating solely neuro patients for 8 years now, and she was really knowledgeable. She also "validated" that the things that I have seen that I KNEW were not normal neuro responses. She didn't give me that "I think you're crazy" look. She even would say -- "I found this - have you seen it before?" when something was not normal. How affirming is that, when you HAVE seen it, but were blown off when you asked the doctor?! She was outstanding. She did say that, because I have such poor control of my left eye, and given the pupil response being abnormal, I really SHOULD get a muscle biopsy. She said that the neuro-opthmalogist is absolutely right. She also said that she knew what I was talking about when I told her what the neuro . . . wanted to do if it's muscular. She said that I should get the biopsy pretty soon. She said I need to talk with the precertification person at the surgeon's office and tell her HOW to get the biopsy done as an inpatient so that I don't have to owe tens of thousands of dollars -- which is what would happen if it was done as an outpatient. Go figure.

So, by and large, I have gotten really good news!!!!! Still have a few 'loose ends' to tie up -- and a few more answers to get, but NO BRAIN SURGERY and NO NECK SURGERY!!!!!!!!!!!!!!!

WOOOOOOOOOOOHOOOOOOOOOOO Time to celebrate!!!

Thank you, THANK YOU for your prayers, for your good thoughts, for that candle that stayed lit ;) , and for everyone who has been so uplifting on this board. You guys are simply the best.

Love to you ALL,

Lynne

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Yesssssssssssssssssssssssssssssss excellent news

Thanks the heavens.

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This is so good to hear, Lynne! :D

Any news on that makeover?

I agree jerseyangel...........sounds like Ty needs to get ya called and made over already!! Holey moley girl!! I pray that extreme home makeover picks up your story so that life would be easier on you! You have so much spirit and kindness and plain old "just deserve" this makeover!! Did you guys ever get the tape sent in?

YEAH for the good news!!!! Happy dance! Please don't celebrate by jumping (or falling face forward) off of the porch into your lillies :P

-Jessica :rolleyes:

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Sounds like an excuse to party if you ask me!

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Sounds like an excuse to party to me, too! Since I walk like a drunk, I always wondered if I actually GOT, well, a little more than tipsy, would I walk NORMALLY????!!!!! Found out the hard way in Vegas with Metta & Chris. It's Chris' fault for bringing the New Grist and ordering the last bottle of wine. That's my story & I'm stickin' to it. :P

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Everything was sent in the end of March and Lynne has not received a call yet. We can only hope and keep praying. I used a green return card and so I know they received it.

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Woohoo! Nice to come home to such good news! :D

Lynne, you have such impressive sounding problems, I almost had to get a dictionary for the eye things. :blink::)

Pauliina

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