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Craniocervical Fusion + Chiari Decompression Surgery Recovery // 3 Month Post-op Update

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My New Etsy Shop → www.etsy.com/s...
Almost 3 months ago, I had my craniocervical fusion (skull-C2) and chiari malformation decompression surgery. I've gotten questions about how I'm doing/if my symptoms have improved from surgery.
Thankfully, I am showing improvements! But am still continuing to struggle with other things. I was diagnosed with tethered cord syndrome, and will be needing another neurosurgery to address that. It's become clear that there is no one perfect "fix" when it comes to Ehlers-Danlos Syndrome (EDS). But there is definitely hope for better days!
Sending love to all!
#EhlersDanlosSyndrome #BrainSurgery #ChiariMalformation
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Products & things I have found useful during my chronic illness journey ❤️️ →
DNRS Program (Brain Retraining): retrainingtheb...
Low-Histamine Meats: www.whiteoakpa...
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Redmond's Real Salt/Electrolytes: shop.redmond.l...
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Amazon favorites: www.amazon.com...
My instagram → / gonnetopots
My blog → gonetopots.com
My facebook page → / gonetopots.rachael
My twitter → / gone_to_pots
Some of the links in the description may be affiliate links! This basically means that if you purchase something through the link, I might receive a small commission (at no extra charge to you). Thank you so much for supporting my channel! 🎗

Опубликовано:

29 авг 2024

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Комментарии : 41

@leeb.5296 5 лет назад

So good to hear from you- You are a bright and shining star! I came across your channel because of your surgery. My son has ME/CFS and is about your age. Jennifer Brea filmed a documentary about ME/CFS called Unrest and recently had the same surgery that you had and has had a full recovery. Looking up the surgery, I found you! You are such a fighter and such an inspiration for others, especially those with unexplained chronic symptoms. We also went to the Mayo Clinic. Although impressed with their systematic approach and kindness, they didn't come up with any answers and they suggested we look elsewhere. We just keep looking! Anyway, I'm so glad that you are seeing some improvement and that you are finding the right people to help. Stay strong and know that there will be more improvements as you heal. Prayers are on the way!

@HealingWithRachael 5 лет назад

Thank you so much, that means a lot! I'm very sorry to hear your son is suffering from ME, but am glad to hear you're able to continue searching for help and answers. I sincerely hope you find them soon! Sending prayers right back at you!

@casielee18 5 лет назад

Lee there is a Facebook group with those of us who either know Jen or are following that same path. I was in the documentary Unrest with my mom and dad and we have started the cci journey as well. ❤️

@bhupatbhaikarmur7038 2 года назад

@@HealingWithRachael hello mem chiari malformation with syrinx surgery success full help me

@hannahbolli9917 5 лет назад

I’m so proud of you Rachael!! Even baby steps deserve to be celebrated! 🥳 Praying for you always. I know you will do amazing with this upcoming surgery! 💚💪🏻

@sheinacristerbagiwa8518 2 года назад

Hi Elizabeth,thank you for sharing your story, watching this made me cry because I feel like I'm just only the one who suffers from chiari malformation that leads to hydrocephalus,the symptoms are horrible,severe headache is my main symptoms, I'm glad that I undergone decompression surgery 4 months ago but until now I'm suffering mild to severe headache, this made me cry most of the time because my symptoms does not go away like what I expected but watching this gave me another courage to still fight, yes its true just like your doctor said up to 2 yrs to heal and I am hoping patiently that we will recover soon, Let us all pray that God will help us to deal with it😭🙏 How is your headache now?

@pattyogletree9940 9 месяцев назад

Your stronger than you think you are! Keep going!

@DawnRenae22 5 лет назад

Oh. LOL meant to also say, kudos to you for giving The Frey Life T-shirt some video time.

@HealingWithRachael 5 лет назад

It's one of my favorite shirts, so comfy! And I love the Freys, so happy to

@Patriotintexas 3 года назад

Hang tough. I'm 4 years post op and while not perfect....better. I'm praying for you for better days ahead.

@HealingWithRachael 3 года назад

Thank you so much ❤️

@NoSleepFromBrooklynAdventures 4 года назад

thank you for sharing your journey, I'm on a similar one but you're further along the surgical adventure which has been a great resource for me. Thank You!!

@HealingWithRachael 4 года назад

I’m glad they’ve been helpful in some way 💚 Wishing you all the best in your journey!!

@charliedell5094 5 лет назад

keep recovering well, you are an inspiration! x

@HealingWithRachael 5 лет назад

Thank you so much!

@HaleyHolt 5 лет назад

Happy to hear your improvement! Has your fatigue gotten better? Could you read before due to ICH? Can you read after if you couldn’t? Do you ever experience cranial settling? Love your RU-vid and your Etsy. I’m seeing Dr. Henderson in a couple of weeks! I’d love to ask you a few questions if you’d be up for it?

@michaelkirkham8950 2 года назад

Two years has gone by since your surgery. Have you seen improvement with your POTS? FYI: you’re a huge inspiration!

@HealingWithRachael 2 года назад

Thanks, Michael! I haven't seen improvements in my POTS from surgery. Now looking back, I think regenerative medicine is usually a much better option than a fusion. That is what I'm going to be doing below my fusion. :)

@DawnRenae22 5 лет назад

If you have not watched Pate's presentation on the RU-vid channel for the Bobby Jones Chiari and Syringomyelia Foundation regarding TCS, please do. I believe he expresses that a stretched cord is equivalent to a compressed one. Because of that, I’m hopeful that more of your POTS symptoms will resolve themselves after your cord is released.

@HealingWithRachael 5 лет назад

I will definitely check that out, thank you! That would be awesome if it did improve POTS. :)

@casielee18 5 лет назад

I have sent a lot of people your way to your Etsy shop. I am in a Facebook group for people with cfs/m.e who are newly diagnosed with cci/aai some Eds and most pots as well. We would love for you to join our group. If you want to know more message me or reply. Glad you’re doing a little better! I met with Dr Henderson once and I am back here now to meet with him again. ❤️

@HealingWithRachael 5 лет назад

Thank you so much, that means a lot 💚 I’d love to join the group. How ever you feel comfortable with telling me the group name ☺️ I’m glad you got to see Dr. H, he’s the best. Hoping all goes well with your next appointment!!

@casielee18 5 лет назад

Gone to POTS sent you a fb message! 🙂

@jameslevinson8935 5 лет назад

Hello, glad to see you’re doing better! I’m considering having the surgery my self. Is there anything that your dr said would be a chronic side effect of the surgery?

@HealingWithRachael 5 лет назад

Thanks! Surgery is such a tough decision. 😔 It definitely should be a last resort, as it’s not a perfect fix. I still sometimes wonder if there was anything else I could have done to avoid it. You won’t be able to move your neck after surgery, and will be more likely to need more surgeries in the future (if you have a connective tissue disorder). But it definitely is necessary for some people and can help them!

@jameslevinson8935 5 лет назад

Thanks for the reply! When you say the surgery is “not a perfect fix” would you mind elaborating what you think the procedure is lacking?

@HealingWithRachael 5 лет назад

@@jameslevinson8935 Yes of course! So there are no guarantees for symptoms to be relieved going into surgery. Many people see improvement, but its rare for all issues to be resolved. Having the surgery also puts you at higher risk for further instabilities and need for more surgery! There are success stories, but I haven't found many amazing success stories (Jen Brea is the best outcome I've heard of, but she doesn't have EDS). I don't want to scare you away from surgery if you need it/will benefit it!

@jameslevinson8935 5 лет назад

Oh okay! Thank you very much for clarifying! I don’t have EDS either just bad instability caused by a whiplash innocent that gave me terrible ligament damage in my cervical spine with chiari. Btw I’m your age as well and had to put my life on pause too so thank you very much for making this channel :) it really feels great to not feel alone especially when it comes to people my age. I hope you have a full recovery! I’m rooting for you!

@HealingWithRachael 5 лет назад

I’m so sorry to hear you’re struggling this much. It’s so difficult! I hope that you find treatments that help you soon. Because yours was caused by an injury maybe you would be more likely to have a great outcome!! 😄 And thank you so much!!

@hanaosman4142 2 года назад

I'm 6 days post op decompression I have extreme body ache

@Napaeozapus 5 лет назад

Do you know of the added risk of floroquinolone antibiotics with Ehlers-Danlos Syndrome? Just a thought when you were talking about surgery and infections. Also have you heard of any nutrient deficiencies that could be related to POTS from doctors or your own research? In some cases anyway.