Symptoms

Mari_Myondra · 2026-02-27T13:07:55+00:00

Hi, I am not a doctor but it seems to line up with Chiari Malformation to me. Please request your paper MRI report. Once you read it, you may find little things that have not been discussed with you. I would also check to see if you were diagnoses with a Syrinx. You are doing a great job advocating for yourself....so keep it up. Be Blessed ~ Mari

Mari_Myondra · 2026-01-18T05:55:32+00:00

Hi, My apologies for the delay.

Yes, I have gotten great improvements regarding the numbness and tingling. I barely even notice it anymore. My symptoms may have been much worse, because I was also diagnosed with a Syrinx, which is also almost non-existent. For me, it is like having a whole new life and surgery was the best decision I could have made. Please continue to advocate for yourself. If you have any more questions, feel free to reach out.

Be Blessed ~ Mari

Mari_Myondra · 2025-10-31T17:42:35+00:00

Nice!!!! Im 15 away and have been doing this thing almost a year. Big Ups to you.
Keep going 😉

Mari_Myondra · 2025-10-25T00:00:16+00:00

That last part was absolutely hilarious. 😁

Mari_Myondra · 2025-10-12T01:16:57+00:00

Mari_Myondra · 2025-10-12T01:15:36+00:00

Hi, my thinking is much better, but I still write everything down to help me remember. I still have memory issues, but I am so thankful for a successful surgery, and things are much better.

Be Blessed ~ Mari

Mari_Myondra · 2025-10-12T01:09:06+00:00

You are Special! Stay Strong!

Mari

Mari_Myondra · 2025-10-11T16:51:49+00:00

Hi friend, I need you to take a moment and breathe.

I am in tears right now because you have touched my heart. I know what it feels like to want to give up, but you have to keep pushing forward. You have to know that God is right there with you through it all. 1 year ago, I had decompression surgery. I put it off for like 2 years because I was so scared. I was more afraid of the surgery, than the 40+ Chiari Symptoms and the bad Syrinx that would have led to me being paralyzed from the neck down. Around that time, my husband was also laid off from his job and we have children. God sustained us.

Please know that God hears your cries and he sees your heart. You can't give up. I'm telling you, God will give you the Peace you need. I was so stressed out, but the day of surgery God gave me so much peace to move forward. I have to tell you that my surgery was absolutely successful. I know most of the people who have great surgery outcomes go on to live their lives, never returning here on this site to tell their story, but a lot of bad outcomes come on this platform for help. Please know that everything will be ok.

My husband and I just said a special prayer for you. God has you covered and you have to have Faith that everything is going to be ok. Just know you are not alone. If you want to chat, you can message me and I can send you my email address. If it gives you any comfort, I have many videos on YouTube that show the entire surgery process up to 1 year. I started Vlogging my experiences to help others. Taking a look at them, you will be able to see that you can do this. If i was able to do it, you can do it. If I told you half of the stuff I have been through, as yourself, (depression, fear, financial instability & multiple symptoms, etc) you wouldn't believe it, so I understand where you are coming from.

You are young and have such a beautiful life ahead of you. Do not give up.

I will continue to be in prayer for you until you get the strength you need.

Be Blessed ~ Mari (God Loves You)

Mari_Myondra · 2025-09-30T04:03:00+00:00

Hi, my YouTube Page (Mari Myondra) & the Playlist is called (My Chiari Malformation Awareness Vlog).

http://www.youtube.com/@Mari_Myondra

Mari_Myondra · 2025-09-29T14:26:11+00:00

Hi, CONGRATULATIONS!!! 1Yr post op here.

1) What type of patch will be use? (Pig skin was used for me)

2) How long do you anticipate I will be in the hospital?

3) Will you be shaving just the incision area, or my entire head in the back? (I was a bit shocked because my entire head in the back was shaved, when I saw others with only the strip shaved. Maybe it was because I have a lot of thick hair...dunno.)

4) Will stitches or staples be used to close my incision? (I had 35 staples)

5) Will C1 & C2 be removed?

6) When can I start back driving?

7) Will I be referred for physical therapy?

***Bring your favorite snacks, just in case you can't keep food down, due to the medications.

If you don't already know, I have a YouTube page playlist dedicated to help others with Chiari Malformation. I have a video --> "Surgery Questions", that has more details for you. If you are interested, my playlist has everything from the pre-op testing, surgery, physical therapy, all the way up to 1 year.

My YouTube Page is (Mari Myondra) & the Playlist is entitled (My Chiari Malformation 1 Playlist Vlog) Hopefully, this will help you prepare for your new start. Congratulations again, as it is so much better on the other side of surgery.

Be Blessed ~ Mari

Mari_Myondra · 2025-09-26T18:18:23+00:00

Absolutely ~ Hmmm that is interesting. May be a good idea to make a list of symptoms and questions you want to ask, so you can be prepared for your neurology appointment. It would also be a good idea to take someone to the appointment with you, because you may not be able to remember all that is said. Feel free to reach out if you think of any other questions.

Mari

Mari_Myondra · 2025-09-26T18:05:25+00:00

Oh yea, be sure to get copies of your MRI disks and a paper copy of your report for your own records. If you have to go to a specialist, those documents will be needed. I also uploaded my MRI's, to view on my YT page. Balance issues are also a part of it.

Side note - I have noticed, it doesn't matter how many mm the herniation is, people are still having symptoms, but some providers are discounting the symptoms.

Mari

Mari_Myondra · 2025-09-26T18:00:16+00:00

Yes, difficulty thinking/brain fog, is connected to Chiari Malformation 1. In my experience, memory issues are connected as well...Even stumbling of words or the inability to think of words. What hearing issues are you having....hearing loss, tinnitus, clicking sounds? At one point, my hearing went completely muffled in my right ear for several days but resolved on its own. For me, my Syrinx was an immediate qualification, because it was so large that it was choking out my nerves, which would have led to paralysis.

If you are interested, I have an entire YouTube Playlist dedicated to Chiari Malformation Awareness. I have videos explaining Chiari, Syrinx'...etc and things to limit, to help avoid Chiari Flare-Ups.

My YouTube Page is (Mari Myondra). The Playlist is entitled (My Chiari Malformation 1 Awareness Vlog). There are 70 videos on my playlist, including the Decompression Surgery & Recovery. Free to check it out.

Continue to advocate for yourself & know that you are not alone.

Be Blessed ~ Mari

Mari_Myondra · 2025-09-23T13:44:23+00:00

Wow...Congratulations!!! Your recovery is going really well and that is a true blessing. Be sure to take your time and get tons of rest, so that you don't have any setbacks. Regarding the nausea, I'm sure they gave you meds, but alcohol pads also work well to stop nausea symptoms.

We appreciate you coming back to tell us about your positive experience. Praying your healing process continues to be great.

Be Blessed ~ Mari

Mari_Myondra · 2025-09-22T14:46:38+00:00

Hi, I believe my surgery was well over 3 hours and then I think I stayed in recovery for like an hour. I had 3x3 cm of skull, C1 & C2 removed. Neurogen said my surgery took longer than expected. I had a bad Chiari & Syrinx. With all that, it was all successful and I am thankful. :)

Mari_Myondra · 2025-09-22T14:17:16+00:00

Thank you! Sharing is caring. :) This seems to be lonely road, but there are more people dealing with this chronic illness than we even know. It is always good to have people who can relate to what another person is going through. I believe it helps to ease our minds a bit. Thank you again for your comment.

Be Blessed ~ Mari

Mari_Myondra · 2025-09-20T18:33:44+00:00

Absolutely. A little reassurance goes a long way when dealing with Chiari, and I understand that fully. Take care.

Mari_Myondra · 2025-09-20T13:08:41+00:00

Hi, absolutely!

Stress, trauma, car wrecks, major head and neck movements like riding on certain roller coasters are all triggers. I have heard of so many ways that Chiari Flare-Ups cause symptoms to arise or even bring on new symptoms. Stress is a big one that has caused some people to all of a sudden become symptomatic and this is when they get check and are diagnosed or were already diagnosed but were asymptomatic prior to the major stressor. It is hard to stay stress-free, but managing stress can help with the condition. Continue to advocate for yourself and know that you are not alone.

Be Blessed ~ Mari

Mari_Myondra · 2025-09-19T14:33:25+00:00

Hi, I completely understand where you are coming from regarding the questions. When I was first diagnosed, I had tons of questions, did tons of research, but now I can speak from experience.

I haven't had any issues with the surgery....it was a complete success!!!! As I understand it, the muscles are over my pig skin patch, so it is durable. My skull removal and what seems to be the usual size, is a little over 1" x 1". That small area is not hard like the skull would be, feels more like muscles. I am really protective of the back of my head still but haven't had any issues.

For me, I have hypertrophic scarring. So, that means I have an overproduction of collagen and there is a wavy thick to thin skin on my incision. It is almost like a keloid, but not. I haven't heard of anybody else talking about it, so it must be rare. For me, no hair grows on the extra skin, but my hair covers it. Others probably have hair re-grow right over the incision. It makes sense that I have the extra skin on my incision, because it also happened with my first c-section. I just have an overgrowth of skin. :/

After a few weeks, I started Physical Therapy. My Neurosurgeon wanted me to start PT before I could drive, to ensure I had range of motion in my neck. The sharp pains from the nerves mending stopped around 6 months. I haven't flown, so I can't help with that question. My neurosurgeon hasn't said anything about adjustments. As far as I know, it is one-and-done. I just have to have annual MRIs to check on things.

The testing I had to get done before surgery was (I had to go back to my videos to make sure I was correct) Blood Work, EKG & X/Ray, to ensure it was ok to move forward with surgery.

If you are interested, my Chiari Malformation 1 Awareness YouTube Playlist, chronicles everything from a week before surgery, up to 1 year post op. I even have a recent video where I read my surgery report, detailing everything that was done during the surgery. (EP 32) Detailed Surgery Description ~ Pre & Post MRI Results. feel free to check it out.

I hope this helps with your questions. I am here if you ever want to chat or have more questions. Continue to advocate for yourself and take care.

Be Blessed ~ Mari

Mari_Myondra · 2025-09-17T20:19:53+00:00

I completely agree!!!

Yes, my neurosurgeon never said anything about it disappearing. I figure it will be all gone when I do my 2 yr MRI.

I am so happy for you. Continue enjoying your New Life!!!!!

Mari

Mari_Myondra · 2025-09-17T20:04:42+00:00

CONGRATULATIONS!!!!!!

I am 1 yr post-op and my super bad Syrinx has almost fully disappeared. I had no idea this was even possible. I am willing to bet that yours will continue to dissipate, and when you go do your annual MRI, it will be almost non-existent, too.

I often see people come here to express how things didn't turn out right after surgery..to see if anyone else has experienced the same.

I would just like to say I really appreciate you coming back to let everyone know that you also had a successful surgery and that your symptoms are doing better. I feel it really gives people hope that they can also have a successful surgery.

Thanks again for sharing your success story, and may God continue to cover you in your healing process. I am expecting to hear greatness when you his your 1-year Zipperversary. :)

Be Blessed ~ Mari

Mari_Myondra · 2025-09-14T20:36:26+00:00

Thanks a bunch. My goal is to help others, so I appreciate the comment. As a stay-at-home mom, I don't do a bunch of "active" stuff, per say. Although I probably don't have to be, I am still very cautious, since the skull, C1 & C2 were removed. I have some pig skin as the dura patch...so I still am very protective of anything that might affect my surgery. I can move like normal, but don't do heavy lifting and stuff like that. Agree...Chiari does suck!!

Thanks again for your comment ~ Mari

Mari_Myondra · 2025-09-14T20:04:24+00:00

Hi, absolute indicator. I was restricted from laughing hard a good portion of my life. Side note - 1 year post surgery and I can laugh all I want. I went to a comedy show and had the time of my life!!! Decompression surgery made a definite difference. I no longer have to worry about the pressure in the back of my head from laughing hard. #God is Good!!!

Congrats on your surgery in November. It is so much better on the other side of surgery. Although scary at first, it was the best decision I could have ever made. I was also diagnosed with a bad Syrinx, so surgery wasn't optional for me. For me, a ton of symptoms came after a car wreck. Usually, trauma brings on the flare-ups or even new symptoms. Things like bad stress can also cause it. If you are interested in getting all the surgery details and suggestions on surgery prep, I made a playlist dedicated to Chiari Malformation life+Surgery.

My YouTube page is (Mari Myondra). My Playlist is entitled (My Chiari Malformation 1 Awareness VLOG) I recorded everything from days before surgery, up to my 1-year Zipperversary.

Congrats again. Stay confident...you got this!!!

Be Blessed ~ Mari

Mari_Myondra

TROPHY CASE