Chiari Online Support Group

New & Concerned

Hey y’all, my name is Diana and I’m 25 years old, from Columbia, SC. I was diagnosed with chiari malformation in January along with a syrinx on my spine. This was determined after and EMG, nerve study and MRI. I was referred to a neurosurgeon who suggested that I go ahead and schedule surgery. Nervous and scared is an understatement. I’ve scheduled to have a second opinion through Greenville Neuro. I was wondering if there were anyone around the Columbia, SC area on here. Also, my symptoms started January 1st, numbness sensation in my right hand which eventually went up my arm. My headaches are terrible and now I just started with the dizziness. Thank you all in advance.

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@Graham25, welcome to the club no one wants to join, lol. We live in the country as well in SC, a very small town on the way to Myrtle Beach. We are about 30 minutes from Myrtle. I see you are in Columbia area, May I ask who your NS is? My daughter has an appointment with a new neurologist in Columbia on the 26th. Her appointment is with Dr. Parrott. My daughter was diagnosed in August and I must say that this has been and is a difficult journey. Thankfully you’ve found this group! It has been a blessing to me. The members here are very willing to share their experiences and answer questions so, by all means, take advantage!! Do you have a surgery scheduled yet? I also saw that you read about the “ meet and greet “ in Matthews next weekend. If you’re able to attend, I would very much like to meet you. Networking with others that have Chiari has become invaluable to me. Also, let me encourage you to use the search engine for this forum. You can go directly to posts about the questions you may have or information you are specifically interested in. Again, welcome and please know that my daughter and I will be praying for you… as we do for every member and family represented here, daily! God bless you and give you peace and comfort in the coming days!
Kindest Regards,
Angel

Thank you so much. Unfortunately, I won’t be able to next weekend. But I would love to another time. My NS is Dr. Rambo with Midlands Ortho& Neuro. Everything just hit me at once with finding out everything so I want a second opinion before I schedule the surgery. Although, I feel like the surgery will be needed. I visit Myrtle frequently, love it there.

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I definitely think a second opinion is always a great idea—especially with this type of major surgery. Please keep us updated on your progress!

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Have you ever mentioned doing like a meet and greet session near you like the one in NC next weekend? If so, I’d love to plan and come.

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Perhaps that would be a good idea but we are only 9 months into our journey and so far have been met with much more resistance than help. Maybe one day… only God knows!

Is she scheduled through Midlands ortho & neuro? That’s who I saw and he was very nice, comforting and reassuring.

It’s actually Palmetto Health USC, Pediatric Neurology. We shall see :wink:

Praying things go better with them!! :two_hearts:

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Thank you very much, me too! :purple_heart: Thanks to God that we know that they are not in control. God will make a way, of that I’m sure. He led us here and will be by our side the entire way. I just pray that it’s sooner rather than later!

Hi
I am from SC I have been dealing with chiari, since 92 I have only lived down here since 2017. I have not found a doctor down here that knows anything at all about chiari or EDS. I go to NY for all my treatment to the best doctor’s Dr. B. I would love to have a meet and greet I would love to know someone that understands what I am going though. Or help someone just finding out about this I have had 9 surgery’s to date. It would be so nice to have someone to talk to…

Hello Lisa,
You’ve been through a lot! We are near Myrtle Beach, not sure where you’re located. There is a local meet and greet CHIARI Support group in Charlotte,NC area. I am relatively new here but plan to attend this month’s meeting next weekend. I too am looking forward to meeting people who understand the daily struggle.

I live 30 miles from Greenville I don’t think I could do this weekend but yes I would love to do the next one. I would be glad to help you if you have any questions or if you just want to talk

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You are not alone my chiari friend we have to stick together. No one else understand us but us! (((()))) Gentle hugs​:purple_heart::purple_heart::purple_heart::purple_heart::purple_heart::purple_heart::purple_heart::purple_heart:

Hi everyone, I highly recommend Dr. Neil Feldstein in NY Columbia Presbyterian for the surgery, he is excellent and drags his feet versus getting in there to do the surgery just because he’s a surgeon, meaning he is conservative. My oldest attends college in SC and my parents live in Bluffton, SC. My son has had two surgeries and my daughter was just diagnosed and we are grappling with what to do. She will attend MUSC in 2021 and should probably join this forum.

Take good care, you are not alone.

Regina