I'm old enough to be your grandpa, in fact I have 2 daughters and 6 grand daughters. I have been told that I need the same surgery following a fall (a different cause, but very similar surgical dangers) some months age. The pain has been with me incessantly especially when trying to sleep, drive in cars or walk on uneven surfaces. I've also been told there are some serious dangers including death so my thoughts are your an incredibly brave young lady and have the best mum n dad you could get. I'm so pleased I saw your video as your courage will help me with my decision. I'm 73 and physically fit and healthy but this neck injury has really bottled me up so I understand it needs to be done. I will think of you and your courage when I go into surgery, a very big decision at your age. Take care and hope you have a full recovery, best wishes from Australia.

Hello dear, you are very good, very sweet. I am a boy 😁 34 years old, with the profession of nurse in the operating room. For more than 20 years I suffer from headaches, neck, eyes, dizziness, loss of balance. I was diagnosed with Arnold Chiari type 1. I had surgery in November 2021. And after a long time (about 6 months after op) I am feeling a little improvement the headaches seem to be gone, but I still have dizziness and loss of balance not so much bad before the op. Now I watched your video and I was very touched because it reminded me of myself, all the steps before and after the operation. I wish you all the best (me too). Greetings from Germany

Be glad you did this! I am 42 with horrible chiari problems, because back in the early 80's it wasn't known about. It has caused me a litany of autoimmune diseases, falls, head injuries. One of my autoimmune diseases is terminal! Taking care of this as soon as possible will make your life longer! Thank you for showing this, as I am absolutely terrified and I have a daughter. I have no family support, I will have to have hired nurses taking care of me, and its scary. Also, people.... please NEVER take migranol nasal spray for migraines, it contains ergot which can cause retroperitoneal fibrosis, I have it, and it slowly chokes out ALL of your major organs! Avoid ANY ergot or methylsergides! They are commonly used for migraines. This disease is NO JOKE!

@rheannalayne6488

5 жыл бұрын

penelope 2232 I have it and no doctors here will take it seriously. I have fainted already and I have horrible migranes all day every day. I feel for you, mines just the start.

I have this surgury done 6 years ago. Mine was fused fron c3 to t2 . You are going to feel better and better. Best wishes for your recovery and health.

This helped so much! I am pretty young and I go to the neurologist today to set surgery dates. I have the same condition and I went from having a 5 day long headache three weeks ago to being diagnosed and getting surgery. I couldn’t help myself from wondering what surgery would be like and this video was a tremendous help!

You’re story is giving me so much hope!

Thank you so much for documenting every step. You are my hero right now

thank you so much for sharing, i may be having this surgery soon too and it is great to see you doing so well, gives me hope x

You are a warrior. It breaks my heart you've had to go through this. Your strength is stunning.

@HealingWithRachael

4 жыл бұрын

Thank you so much, that really means a lot!

@rootedrotor525

4 жыл бұрын

@@HealingWithRachael I have been searching for a diagnosis for 3 years for my condition. I had such a good life and now it's just a mess. It's tough to be strong everyday.

@HealingWithRachael

4 жыл бұрын

I totally understand that. Wishing you all the best in your journey!

@wolfie8748

3 жыл бұрын

@@rootedrotor525 You will be better with time. Stay strong trust me. Bad days are past now , now its time for good days !

So happy you got through it! 👍. You've got a nice Mom. We're thinking of you and asking God the help you stay strong. 😘

@HealingWithRachael

5 жыл бұрын

Thank you so much, that means a lot!!

@bhupatbhaikarmur7038

3 жыл бұрын

@@HealingWithRachael very good mem

You’re such a good inspiration for me and everyone else going through the stuff that you went through and what I’m going through

@HealingWithRachael

4 жыл бұрын

That's so kind of you, thank you!

@claytonrobbins9497

4 жыл бұрын

Rachael Elizabeth btw in case you were wondering I just had spinal fusion surgery 2. Nights ago

@claytonrobbins9497

4 жыл бұрын

Rachael Elizabeth you welcome

Thank you and God bless you! You are a strong young lady!

I’m so proud of you Rachael! 💚 This is a very intense surgery with a very overwhelming and difficult recovery, but you have been so strong and shown such patience. I’m so glad that you have been able to have your amazing family by your side all throughout this process! 🥰 Sending prayers, hugs, love, and wishes for a good recovery! 😘

@HealingWithRachael

5 жыл бұрын

You always say the most thoughtful things 💚Thank you sweet Hannah!!!

Kudos to you for your amazing strength through a very tough and painful surgery! Praying for continued healing! Much love from a fellow Zebra!

@HealingWithRachael

5 жыл бұрын

Thank you Kristin, that's so kind of you 😊All the best to you on your zebra journey!!

I just had this surgery on august 23 2021. I had to have c2-t2 my spine was really messed up. I’m in a lot of pain but I know in time I will recover. Thank you for sharing your story💐

@cet9374

Жыл бұрын

Doing any better?

@lovlyazcanbc

Жыл бұрын

@@cet9374 not at all, thank you for asking. Now I’m just waiting for my healing.

I had the same surgery as you (fusion of occiput-c2, open reduction, fusion, craniectomy/suboccipital decompression) and the same surgeon (except I live like 30 min away from the hospital). It took me 3 years to get diagnosed and I had surgery 1 month after diagnosis. It's crazy, but we seem to have had totally different experiences! It's worth noting that I have JHS, not EDS and brain stem compression wasn't the primary concern for me- it was that turning my head causes my veins to be pinched in my spine and cut off all the blood flow to my brain. I want to share my experience (maybe to commiserate with people who understand and maybe to ease the fear of others needing this surgery). I had my surgery in the middle of the covid pandemic. Because I was under 21 I was allowed one visitor during daytime hours, my mom. I went to the pre-op portion alone since family weren't allowed there. I asked if they could take pictures of my exposed spine out of personal interest/curiosity and they declined lol. I don't remember being given anesthesia, I think I lost some time from before the surgery. I actually woke up really happy and loopy and drank a whole smoothie within an hour of waking up. The rest of my meals were normal solid foods. I walked on the same day of the operation- something I was unable to do beforehand. I went off of pain meds on day 2- I loved the feeling of being able to think again so much that I didn't want pain meds muddying my brain. It hurt less after the surgery than before. I was almost cleared to go home on day 2 but my wound was still draining so I stayed a 3rd day then went home. My seizures/dystonias and fainting/blackouts completely stopped. I used Tylenol occasionally if I felt I really needed something for the pain but otherwise went clear. I still have tremors in my legs when using stairs and I have a very annoying intention tremor and essential tremor in my hands that make certain things difficult/impossible, and of course there is the ever-present brain fog that creeps it's way in, but other than that most of my worst symptoms are all gone thanks to surgery and physical therapy. Of course I have instability all the way down to c6 so we'll see if it stays that way- but I'm cautiously optimistic.

@cet9374

Жыл бұрын

Doing well?

Dr. Henderson was my surgeon 10 years ago. He gave me my life back.

@HealingWithRachael

2 жыл бұрын

I’m so glad to hear that!!! ❤️

Sending love and prayers to you!

@HealingWithRachael

5 жыл бұрын

Thank you Al!!

So glad I found your channel. I have CRPS from Thoracic region down and 2 spinal cord stimulators. Was having a lot of neck issues so went for a cervical CT yesterday. My CXA was only 118 degrees. I was sent for x-rays this afternoon and have an appointment Monday. I’m so scared but need to get this addressed

@HealingWithRachael

3 жыл бұрын

Wishing you all the best!!

@thewilltowalk6651

3 жыл бұрын

Thank you! Struggling to find a specialist. Was hoping to see Dr. Henderson from the Metropolitan Neurosurgery Group in Maryland, but that was a bust cuz he doesn’t take Medicare. Now I am seeing a neurosurgeon up at Hershey. Just stressed cuz it seems like from the what I’ve heard in the support group I joined, that you either see a CCI specialists or don’t find help. Any guidance would be much appreciated

How are you doing now? How are your symptoms. I’m a 42 year and married with three kids. Just praying for quick recovery!

New Sub . Cheering for you Beautiful. ! Huge Hugs to you and your amazing family .

@HealingWithRachael

5 жыл бұрын

Thank you so much, that means a lot! 💚

Hi Rachel, just wanted to say your videos are very helpful and informative as a fellow POTS patient - wishing you all the best on your recovery from the CCI & Chiari fusion surgery. As you noted, I know it will be a long journey ahead for healing and recovery. Even though it's just been two weeks, do you mind if I ask if your surgery has had any impact on your POTS?

@HealingWithRachael

5 жыл бұрын

Hi Billy! I'm so glad my videos have been helpful to you in some way 😊I will be posting another video update soon--but I've had some post-op complications that have set me back a bit. Unfortunately, I've seen no change in my POTS so far. My surgeon says that some see improvements in POTS and some don't. He also said it can take the brainstem up to 2 years to heal...so we may be too early to tell.

@nikki10114

4 жыл бұрын

Actually 2-5 with eda healing garbage zebra genes.yes im a zebra and im so angry this happens in our bodies and the bs ppl gotta deal woth.any tips for nausea

You are amazing and very inspiring!

@HealingWithRachael

4 жыл бұрын

That's so sweet of you to say, thank you!

Your story is so inspiring and you have the most amazing attitude!!! I don’t have chiari malformation but I do have instability in my neck because my C1 is fused to my skull. So weird right?! I just started wearing a neck brace and am about to have a fusion done at Duke Raleigh hospital in the next week or so. My surgeon said he hopes to only fuse C1 and C2 but he might have to take it down to C3 and he is hoping he won’t have to fuse to my skull. I know your surgery was way bigger but any advice would be so appreciated! Also, how in the world do you sleep in your brace? I honestly cannot do it. Lol

I have to get this surgery soon and you just make me feel so much better thank you so much for vlogging your experience you are the best❤️

@HealingWithRachael

3 жыл бұрын

You got this! All the best with everything. ❤️

@fame_supermansaw5979

3 жыл бұрын

@@HealingWithRachael Oh my Gosh thank YOU so much, I know I already said this, but you just make me feel so much better😂 How is your recovery now?

@veronicareynolds372

2 жыл бұрын

@@fame_supermansaw5979 How are you doing now?

@fame_supermansaw5979

2 жыл бұрын

@@veronicareynolds372 I’m doing great! Right after the surgery, it was very tough with headaches and throwing up everything like that but it’s honestly amazing how I transitioned from feeling bad every day to perfectly normal so I’m great thanks for asking!

@veronicareynolds372

2 жыл бұрын

@@fame_supermansaw5979 That's great! I'm so happy you are feeling better. How long have you had CCI? And do you have EDS? And was your doctor Dr.Henderson?

God bless you everything will be good my prayers are with you.

@HealingWithRachael

4 жыл бұрын

Thank you!

i’m going for my sugery on wednesday and i’m nervous 😂😩

I'm going to a neurologist next week to see if I have Chiari. I'm so nervous!!!

I have severe pots and m.e/cfs. I am going to see Dr Henderson next month. I would love an update on how you’re feeling. Feel free to message me!

@HealingWithRachael

5 жыл бұрын

I hope your appointment with Dr. Henderson goes well! He is an amazing surgeon and person. I'm planning on doing a video update soon. Unfortunately, I had to have emergency surgery about a week and a half ago due my incision reopening and becoming infected :( This has set me back, but hopefully I'll see improvements soon. All the best to you!!

@casielee18

5 жыл бұрын

Gone to POTS oh girl I’m SO sorry. That must be so difficult for you! I hope the emergency surgery goes well. I will be praying for you!

Hi. I hope you are doing great at the moment. I have a question please, do you think the operation was necessary for your case? Also where did you do it?

Q1 - What kind of Doctor did you see who diagnosed your CCI? I dont have hEDS but I think I have CCI. For 6 months ive been in constant pain (debilitating base of skull/neck/headaches) and I cant find anyone who treats this. Neurologist, no. ENT, no. 2 primary doctors, no. 2 physical therapists, no. I even tried 3 chiropractors, no. Nobody even knows how to image for it or what to look for. I finally reached out to a cervical surgeon, but she said she only does surgery, she doesnt consultate and diagnose. I dont know who to go to. Im so lonely :(

@jameslevinson8935

5 жыл бұрын

Brodha Sattva look up dr Joel Franck in Florida. He has devoted his practice to patented technology he gas created for this type of surgery. The next thing i would recommend before surgery is called an atlas orthogonal chiropractor they do the same things without surgery

@HealingWithRachael

5 жыл бұрын

Unfortunately, there are only like 3-4 doctors in the US that diagnose and treat CCI. Fraser Henderson, Paolo Bolognese, Sandhu, and Jeffrey Greenfield. I hope you don't have CCI, though. There are other causes of skull-base pain such as chiari and intracranial hypertension. Best of luck!!

@nikki10114

4 жыл бұрын

CNt wait to meet the guy in Mryland

May I ask what doctor you used . I live in Delaware and I think I have what you have . I’m searching for a doctor .thank you for your videos . Hope your well .

It definitely gets better- unfortunately I had to do it three times to get the fusion to stick butttt it’s better now!!

Hi what hospital were you going and what doctor? I have very hard problems with Chiari and my neck. And having a Hard time finding Help! Thanks for your videos :)

Thank you for this video and sharing your story ❤️ it's honestly hard to watch because I am scheduled for o-c3 fusion in a month. I was wondering, is there anything you suggest having ready for recovery? I'm wondering if I should look for easy on clothes or anything.

@HealingWithRachael

3 жыл бұрын

Hi Erin! Wishing you all the best with your upcoming surgery. ♥️ For things to bring to the hospital, I'd say: button down pajamas, soft blankets, soft pillows (if you have access to them), and a stuffed animal to cuddle. You've got this!! I hope it makes a difference for you! :)

@veronicareynolds372

2 жыл бұрын

How did your surgery go?

@westsidekasper4860

2 жыл бұрын

@@veronicareynolds372 she died or something

I've had a 2 level cervical fusion and it is hard to get used to having a foreign object like feeling in your throat, but it does go away. Best of luck to you

God Bess YOU Sweet Heart !!! Wish You all the best ! Heal Well !! eat lots of fresh veggies and fresh veggie juice. Do deep breathing t slow your heart rate . its always worth it . You will be OK . seriously eat tones of fresh raw veggies&fruits so you heal well.

@JDB61698

7 ай бұрын

And most importantly animal based protein.

👍Tapfere junge Frau,ich wünsche Ihnen gute Besserung ✊✊👍🇸🇰

U r so brave n beautiful

@HealingWithRachael

4 жыл бұрын

Thank you so much ❤️

Ive been in hospital for 3 gunshot wounds and i gtta admit this scares me more but o well live in da hood my mom never told me living was going to be painful i sure hope death is sweeter to me

Hey! Hope you get better soon. I was wondering do you still have PoTs or was it this actually this craniocervical issue?

@HealingWithRachael

5 жыл бұрын

Thank you!! 💚 Yes, I do have POTS still unfortunately. We are hoping that it will improve when my brainstem heals from the damage from my CCI/chiari.

@kirsxc

5 жыл бұрын

Gone to POTS oh! I hope it all goes well💓 are/were you on any heart meds?x

@HealingWithRachael

5 жыл бұрын

Thanks girl!! And yes, I was on and still am on a beta blocker called propranolol. It helps some but I wish it did more

Hello elizabeth whot problem success full

Recovering from surgery will boss eyebrows yass

@HealingWithRachael

4 жыл бұрын

hahaha thanks girl 😂

@mackenzieb2218

4 жыл бұрын

@@HealingWithRachael I hope your recovery is going well!

I am the same with the pain meds. Do u use any tricks or are successful with any other ways to cope with the pain

I'd love to hear if your dystonia & seizures have improved...I'm hoping my surgery helps this for me, it's 8 days from now...getting so anxious. Thx again for sharing so much.

@HealingWithRachael

4 жыл бұрын

Unfortunately they haven’t improved much yet-but mine seem to now be very correlated with high intracranial pressure. They go away after a spinal tap. So I may end up needing a shunt. I know several people that have had huge improvements in dystonias from surgery, though 😃 Everyone is just a little different, huh? Really hoping that surgery will make a huge difference for you!

@ehlersdanlosmom6847

4 жыл бұрын

@@HealingWithRachael I'm sorry yours didn't resolve after surgery but it sounds like you're onto something with high intracranial pressure. I really hope it helps you. I have an 8 year old little girl and I absolutely hate having these episodes in front of her...so hopeful mine resolve. I'll keep following your journey, you and your family are wonderful.

@HealingWithRachael

4 жыл бұрын

Oh my goodness, I can’t imagine! Sending prayers for you and your sweet family 💚

Hoping you're doing well. Do you have an update?

@HealingWithRachael

5 жыл бұрын

Yes I do! I’ll be posting another video with an update either tonight or tomorrow ☺️

💗💗💗💗

I am illness i am effected syringomyeliy please help me sir

had that 2001 all the best

💪💪💪

Oh man my fear is the puking part

@RenTheRoot1

3 жыл бұрын

If it makes you feel any better, I didn't like at all after mine. It varies person to person.

Ty for thid

Is comment is late but my mum has chiari and she got the surgery

Or any meds besides narcotics to help control pain

DOROTHY SAYS,LOOK UP ROSS HOUSER MD‼️‼️‼️‼️‼️‼️‼️‼️‼️‼️‼️‼️‼️‼️‼️‼️‼️‼️‼️‼️‼️‼️‼️‼️‼️‼️‼️‼️‼️‼️‼️‼️‼️‼️‼️‼️‼️👍

Im 9 days after chiari surgery..im at home now, but i still feeling very sick..my head explode when i move him.... 🥲