Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Tiredofdoctors - Lynne


mouse

Recommended Posts

jerseyangel Proficient

Armetta, Thanks for this piece of good news!

I hope you feel better soon :)


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



  • Replies 105
  • Created
  • Last Reply
DingoGirl Enthusiast

Oh! Yes, Armetta, thanks! Keep us posted.......will keep praying. :)

mouse Enthusiast

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.

VydorScope Proficient

Tanks for the update!!!!

CarlaB Enthusiast

Thanks for the update, that's great news!

Lisa Mentor

Hey Lynne:

If I don't talk to you before tomorrow...MAY THE FORCE BE WITH YOU!!!!!!!!!!!!!!!!!!!

VydorScope Proficient
Hey Lynne:

If I don't talk to you before tomorrow...MAY THE FORCE BE WITH YOU!!!!!!!!!!!!!!!!!!!

and "street cred" too! :lol:


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



jerseyangel Proficient

:lol::lol: Street cred :lol::lol:

Sorry Lynne--we're a bunch of nuts, as you know! :P

aikiducky Apprentice

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

Cheri A Contributor

Hi.. just wanted to say that I am saying a prayer for you and your doctor today!

tiredofdoctors Enthusiast

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

VydorScope Proficient

YAY!!!

jerseyangel Proficient

This is so good to hear, Lynne! :D

Any news on that makeover?

Lisa Mentor

SO GLAD YOU RECIEVED GOOD NEW TODAY...(wispering "told ya so")

pedro Explorer

Yesssssssssssssssssssssssssssssss excellent news

Thanks the heavens.

angel-jd1 Community Regular
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:

Cheri A Contributor

GREAT NEWS! Congratulations!

Kyalesyin Apprentice

Sounds like an excuse to party if you ask me!

CarlaB Enthusiast

wooohooo!

tiredofdoctors Enthusiast

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

mouse Enthusiast

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.

VegasCeliacBuckeye Collaborator

Soooooo,

Vegas is back on?

aikiducky Apprentice

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

Nantzie Collaborator

Oh, I'm so excited for you!!! That's wonderful news.

Hugs, hugs, and more {{{HUGS}}}!!

:D:D:D

Nancy

Canadian Karen Community Regular

So........

Does this mean there will be no exploding at 10,000 ft.?

:lol:

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,566
    • Most Online (within 30 mins)
      7,748

    Rrenee2990
    Newest Member
    Rrenee2990
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • petitojou
      Thank you so much for sharing your experience and I found myself giggling with happiness as I read how your body reached such spring! And I hope that your current journey is also successful!! Definitely starting the food diary! So many amazing advices. And it’s very scary. It really hits all our soft spots as well as our confidence system. Most doctors I went thought I was underage despite being in my late 20s. Right now I look like am I twelve, but is also this body that’s taking so much, so I might as well love it too! Going to make the necessary changes and stay in this path. Thank you again! 🫶
    • petitojou
      Thank you so much for the information and kind message! Reading this transformed how I’ve been viewing my efforts and progress. Guess there’s still a lot to celebrate and also heal 😌  Yes, I’ve been taking it! Just recently started taking a multivitamin supplement and separated vitamin D! I also took chewable Iron polymaltose for ferritin deficiency 2 months ago but was unable to absorb any of it.  Thank you again! Hearing such gentle words from the community makes my body and heart more patient and excited for the future. 
    • ckeyser88
      I am looking for a roomie in Chicago, Denver or Nashville! 
    • Scott Adams
      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.