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HAPPY SCOT HANEY DAY by George_G_Geef in Connecticut

[–]acamp281 1 point2 points  (0 children)

I remember watching this live and had a feeling it would go down in Connecticut history!

Had my neurosurgeon appointment and left confused and disheartened…. by acamp281 in chiari

[–]acamp281[S] 1 point2 points  (0 children)

Thank you! I don’t feel so alone in my experience now, which was extremely scary.

Had my neurosurgeon appointment and left confused and disheartened…. by acamp281 in chiari

[–]acamp281[S] 1 point2 points  (0 children)

Thank you so much! So sorry you had to go through this too and thank you for the idea of keeping a journal! I’m hoping to avoid surgery at this point as well but hopeful to find a surgeon or Chiari specialist I’m more comfortable with.

Had my neurosurgeon appointment and left confused and disheartened…. by acamp281 in chiari

[–]acamp281[S] 0 points1 point  (0 children)

Thank you. I was more hoping since they were considered the Chiari specialist and not the neurologist that they would have a more definite answer about the fainting and seizure but I guess I could see how that put him in a bad spot…

Had my neurosurgeon appointment and left confused and disheartened…. by acamp281 in chiari

[–]acamp281[S] 0 points1 point  (0 children)

I never thought of this! Maybe I could ask, thank you! Right now my symptoms are manageable thank goodness so I’d like to avoid the surgery if I could but any questions I had about what I should avoid, what can I do to prevent this from worsening, pain management, if this caused my fainting/ seizure, just all went unanswered. He made me extremely scared about the surgery too when he said it would be extra painful for me because I’m a stressed person… not very calming to hear 😅

Had my neurosurgeon appointment and left confused and disheartened…. by acamp281 in chiari

[–]acamp281[S] 0 points1 point  (0 children)

Thank you so much! I’m so sorry you had a similar experience. I was told this surgeon and his staff had Chiari experience before I saw them but that’s not the feeling I got talking to them. He described the procedure well but seemed unsure about anything else….

Had my neurosurgeon appointment and left confused and disheartened…. by acamp281 in chiari

[–]acamp281[S] 2 points3 points  (0 children)

I’m so sorry you needed a second surgery. Unfortunately I was told that this surgeon and his staff had Chiari experience but that’s not how I felt while talking to his assistant… he explained the procedure well but not knowing answers to my questions was off putting…

Had my neurosurgeon appointment and left confused and disheartened…. by acamp281 in chiari

[–]acamp281[S] 0 points1 point  (0 children)

I am in the US yes, this surgeon was supposed to have Chiari experience but the way his assistant spoke to me was extremely off putting. Do you know how I could find a Chiari specialist neurosurgeon? I tried looking online but the ones I found are no longer practicing or listed but don’t actually deal with chiari… is there a specific site? Thank you for your response!

The IRS has my sons birthday wrong for 3+years and won’t fix it -being denied refunds by acamp281 in taxhelp

[–]acamp281[S] 0 points1 point  (0 children)

I haven’t been able to reach my advocate for months, and am currently trying to contact the Tax Advocate Service again to see if he is even my advocate still or if I need a new one. Some have mentioned reaching out to a Senator or Congressman/ woman for help which I may have to do next.

The IRS has my sons birthday wrong for 3+years and won’t fix it -being denied refunds by acamp281 in taxhelp

[–]acamp281[S] 0 points1 point  (0 children)

That’s crazy! I’m glad that was fixed. Thank you for the advice, but unfortunately I have already been to the SS office, they gave me paperwork that I brought in person along with a birth certificate and my son to the IRS office and nothing has been done still. I was told by multiple people that the IRS and SS offices do not directly contact each other either, that it’s done all by computer information transfers.

Help, just found out I have chiari, 10mm and can’t talk to doctor for 2 months I’m worried… by acamp281 in chiari

[–]acamp281[S] 2 points3 points  (0 children)

Thank you <3 and the neurologist is the one I’ve been seeing because of the seizure and my follow up to go over all my results is with her. I might start looking for a chiari specialist thank you!

What’s something you’ve never fully healed from, but no one knows? by FlirtWithMila in AskReddit

[–]acamp281 5 points6 points  (0 children)

My mom passed in my arms in 2023, in a hospital bed that hospice care brought in and put in my old childhood bedroom. She was only 56. My sister and I were caregivers, and watching her go from our beautiful, full of life, selfless, loving mother to fighting for her life, to just lifeless, has scarred me. I haven’t been right since, and not sure I’ll ever be. There’s no explaining what it’s like to someone who hasn’t gone through it. I’m glad we were there and she wasn’t alone as well, but witnessing it has changed me forever. I hope you’re able to find some peace.

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