Going for an MRI to monitor my Syrinx: why I might be a quadriplegic someday
Вставка
- Опубліковано 15 сер 2021
- I have a condition called Syringomyelia, which is an abnormal accumulation of cerebrospinal fluid in my spinal cord. The extra spinal fluid creates something called a Syrinx which is basically just a cyst in my spinal cord that can damage healthy nerves. Every year I have to go for an MRI to get it monitor my Syrinx to make sure that it is stable and is not affecting the function in my upper body. If I'm lucky the doctors will be able to prevent any major loss of function but if treatments are not effective then I could become a quadriplegic someday.
In this video I take you with me to see what a typical MRI experience is like.
#syringomyelia #mriscan #waitingfortheresults
For more information on Syringomyelia:
www.ninds.nih.gov/Disorders/P...
Follow me:
Instagram:
/ bneunzig_em. .
Facebook:
/ empoweredpara
My Website:
empoweredpara.com/ - Розваги
Hi Britney, thanks for talking about your syrinx. A lot of people don’t know about them so it’s great that you use your channel to educate people. Your channel is brilliant 👍
Thanks ❤❤
New SCI in March. I just wanted to say Thankyou for your videos! They have helped me a lot! My prayers and good vibes are with you!
thank you! Keep your head up! Can't promise life in a wheelchair is easy but I can promise you will get stronger and life will start to feel normal again!
I am so impressed with how you got onto the mri bed!
thanks! Took years to get confident enough!
Loved the video Brit!
Thanks!
You are SPECIAL thank you for filming your life. My life is almost over but watching you keeps me going. Take care and may GOD BLESS.
I'm glad my contents makes you feel good:) Sending 🫂 🤗 your way!
May God bless you
Thank you so much for showing how your syrinx is monitored. I have never heard of this before so I’m a complete newbie I was recently told I have 12 syrinx cysts in my spinal cord. I’m trying to learn all about this so I can hopefully prevent it from getting worse and try and understand what it all means
Thank you, that was very informative.
You're welcome!
I actually didn't know this was pretty common thing for people with an sci. This is why it's great for people like you in the community to make this videos to let us know the signs to look out for. Thanks for posting this and i'm glad that your results didn't show anything getting worse.
Thanks! I'm relieved. And getting so many comments from people that also have a syrinx. It's even more common than I thought !
Im glad you’re bringing awareness to this. When I found out that was why I was in so much pain no doctors around knew what was going on. They just made me feel like I was crazy and gave me no hope. I eventually found a chiropractic neurologist “gates brain health” and he helped a lot. I’d love to learn more from you and hear what you’ve learned.
I've learned a lot from subscribers. Here's a doctor that specializes that I have heard many good things about
falcispinalcord.com/services/posttraumatic-spinal-cord-tethering-and-syringomyelia.dot
A few other people have written saying that they had their arachnoid tissue cut and it has worked to reduce the syrinx symptoms.
I think those are the biggest things that remember learning from people! Hope it helps!
Hi i know this is 2 years old now but I'm watching because i recently found out that my 24yr old daughter has Chiari Malformation type1 with severe Syringomyelia. I had no idea what it was prior to reading the radiology report. She had a brain MRI after she started having seizures. It has been a real shock to read about it. My daughter has an abnormal brain with thickening in a lot of areas among other things but i never knew about the Chiari or Syringomyelia. Im meeting with her neurologist in about 2 and a half weeks but like all the her medical things in the past I try understand as well as im able to be the best mom and make the right decisions for her. Thanks for documenting your story/life. Strange actually as i was subscribed to your channel already because I have permanent nerve damage in my lower spine due to Degenerative Disc Disease. Ive had surgery on my neck twice and have titanium disc in C6/C7 and fusion C5/C6 and then i had surgery in L5/S1 and that's where i now have permanent nerve damage. So i came across your channel looking for my own interests and now I'm looking for my daughter. Oh my word i think i just repeated eevrything. Apologies for that. I'll stop now. But thank you for sharing and i hope your Syringomyelia is stable. Dont know if stable is the right terminology but hopefully you know what i mean. If you even see this message that is.
It's a scary diagnosis to receive for sure but thankfully it's very treatmentable. Stay positive and good luck!
@@EmpoweredPara thanks so much for that!! Take care 🌺
For me thinking about your future as a possible quad, i feel the biggest hurdle would be getting over the fact that you can't do the daily tasks that you normally do for yourself (ie cathing/bowl) and the tasks you share as a wife/mother. But if I can find a way to feel ok with those same feelings even though im VERY single and don't have kids. It's been a pleasure getting to know your friend group as I don't have too many para friends that im super tight with. Sport is my MAJOR outlet for my personal happiness. It brings me back to when i was most fulfilled growing up racing motocross.
Gracias amiga exelete informacion felicidades 🌻
de nada mi amigo
Thank you for posting this. I also have a syrinx and it is very painful to live with for me personally. I’m not paralyzed thank God but I can’t wear certain pants because it’ll rub up against my scar because it’s so sensitive. I have had my back cut open twice. I’ve been to plenty of mris myself I’m not a fan lol. So thank you so much for sharing this video. I also deal with numb hands a lot too. I get itchy in the hands also.
I am glad that you aren't paralyzed but a syrinx is no fun no matter what . I'm glad there are a group of us that can share this very human experience and at least know a little of what each other goes through.
Hang in there sis you going to be alright everything will be fine without appointment
Thanks friend! Helps having people in my corner to reassure me!
@@EmpoweredPara it's not a problem you know I'm there for you..you know you can always talk to me if you want
Here watching to learn more about syrinx as ive just found i also have it
I hope my videos help you feel less alone:)
I've just found out my daughter has it. She's 24 but with the mind of a child and it's scary to know she has this an Chiari Malformation type 1. I only found out a few days ago after reading the radiologist report after a brain MRI. Going to discuss it with her neurologist in about 2 weeks. Her dad is kind of playing it down, like doesn't want to take the news seriously because she's fine or showing no symptoms. I'm scared.
I am always late for everything 🤦🏼♀️ too! I don’t know 🤷🏼♀️ how I get anything done! Love the Jaws sweatshirt!
I read somewhere that people that are habitually late are more optimistic lol. I tell myself that way too often. I should probably start leaving on time, it's probably the adult thing to do haha. The sweater is actually my son's! But is steal it sometimes because I like it so much!
I saw the hospital sign, 'Gamma Knife'. If you look up Dr. Thomas Morgan in RI, they brought a special Gamma Knife machine in for his acoustic neuroma. It's sitting in the hallway in RIH.
Interesting!
@@EmpoweredPara yeah...it was actually flown in from Switzerland. He is listed as the top 20th doctor in the US...but he is an ass and his reviews reflect that. I'm also his foster sister and concur with those reviews. In fact, I have no clue how he got listed as top 20 doctor...but he goes against insurance policies and companies...so money talks and BS walks for sure. This is probably how and why there is a Gamma Knife machine sitting in the hallway at RIH. He's a neurologist...but I would NEVER recommend anyone go to him.
@@morgancalvi6675 money talks and its who you know!
@@EmpoweredPara right on
I have had a syrinx and chairimalformation had surgery 18 years ago in Toronto have been fine ever since
slightly different issue than a traumatic syrinx
God bless You princess 😉😊
Thank you!
My cochlear implant has the latest magnet in it that is free to rotate in an MRI machine so it doesn't get twisted out of my skull. I never got an emergency button or headphones when I had MRI's. Just told to put in ear plugs and be still. The did my brain once to look for MS and my back once to see if I had a tumor on my spine. Turns out, nothing in my head. No surprise there.
Lol. They wouldn't find anything in my head either haha
You know you scared the s*** out of me when I read the title of this video
Awe you were worried? Well that's sweet 😉
@@EmpoweredPara you are a friend why would I not be worried when I see MRI
I tried telling her that.
I just found out I have this sounds a lot like where my starts and ends
I have a syrinx from T2 to T12 end plate that has put me in a wheelchair. I feel nothing from chest down and lost control of bladder and bowls. Happy someone could do a video and about it. I don't walk at all these days no surgery my doctor is very slow.
That is unfortunate. I hope your surgeon hurries up so there is no more loss of function! I feel your pain 😞. We are in this together ❤.
My doctor is also very slow Beverly, but sadly, with spinal cord injuries, they can become permanent...so I wish he'd pull his slow thumb out of some other place slow.
@@EmpoweredPara thank you. We are in this together. Hope all goes well for you
@@morgancalvi6675 I understand I wish mine would. In March last time I was hospitalized with the syrinx they said my neurologist had given up on me which scared me, but I hope he stops blaming everything else and sees the real reason to it. Hope all goes well for you also
@@beverlymartinofficial293 you might want to get a different neurologist. If he has given up on you, he may not have plans to fix it...you know? I think my surgeon is just stringing me along. Here I am suffering with no quality of life and I'm 60. I've been sitting here 2 years really suffering...and this bloke is coming up with one excuse after another not to help. I am really ready to throw the towel in.
Tho I’m not having issues with syrinx I am having issues with my ulnar nerve. It’s causing the same type of symptoms with loss of hand function, pain and numbness. Trying to avoid surgery at all cost so trying everything else instead. Praying for good news for you!
And I can’t get an mri, so I’m totally screwed there!
I have minor problems with my ulnar nerve. Definitely painful. My symptoms are mostly at night. Try ulnar nerve flossing. Google it! There are lots of exercises.
02:27 No, it doesn't look weird! 👍
thanks 😉
Sending Postive vibes
Thanks!
@@EmpoweredPara can chiropractic medicine help?
I have lots of spinal cysts they go from my cervical vertebra down to my sacrum. I also have two tumors (non cancerous) several herniated discs, spinal stenosis and some other lovely issues. It is causing me issues with pain, weakness, loss of feeling, numbness and tingling, and I had to have two anterior cervical discectomy and fusion surgeries. I did have a plate holding my cervical vertebra together but they had to remove it when I had my second surgery.
Oh. My. Freaking. Gosh!!!! You are basically a walking miracle lol. Can't knock you down! I love must be very difficult living with all of that! What do you do to remain positive?
@@EmpoweredPara I just remind myself that I’m lucky to be alive and lucky to have my wonderful children. They keep me from getting too tired of my life. They help me smile and laugh. I also have my cats to keep me company. I fought tooth and nail to get my medicines and I also go to strengthening pt. Right now they are worried about cauda equina syndrome and I am honestly scared about it as well. I would say that you’re a miracle as well, I watched your video about how you became paralyzed and I admire the way you pulled through that. I enjoy watching your journey and if I felt more confident I would make videos as well.
@@Jaggededge112 there needs to be more youtubers with disabilities! You should make videos! I was scared at first too:)
My kids keep me positive as well. How old are your kids?
@@EmpoweredPara I will try to start making videos. Thank you for the encouragement. My son turned 19 on August 6 and my daughter is 16. I might be biased but I think they are very handsome and beautiful. Your kiddos are so beautiful as well. How old are they?
@@EmpoweredPara I want to wish you luck on the results of your mri.
The title really cut me deep. 😭
Do you deal with much spasms while laying flat in the mri machine?
some, but not bad
It's funny how I knew you would be late whenever you were talking to me today
Lol. Yep. You got that spot on!
@@EmpoweredPara it wasn't hard to figure out I do watch your videos. And I do know you're a wife and a mom.
Great informative video. Where is your Syrinx located and how wide? Have you had any surgeries yet to eliminate the root cause?
I've had 2 surgeries to drain the syrinx but I am under the impression that there is no root cause that they know of. The syrinx goes almost the whole length of my spine.
@@EmpoweredPara I am guessing they placed a syringo-subarachnoid shunt to drain the syrinx. You have idiopathic syringomyelia and syrinx goes the whole length of spine, that's something rare. At least I had never heard before. Did you ever consulted with the institute which does the minimal invasive surgery in Barcelona to release the filum terminale? This surgery has helped many.
@@iamatrooper98835 no I've never heard of that! Can I have more information?
How do you know about the Barcelona clinic? Do you know anyone that has gone there?
Hey ! I am german .One year I be in a weelchair after a "schlaganfall" . Your vid?s for me good .Make it more please. Rale 65y old
I make a video once a week so if you subscribe you will get notified! Is there something you would like me to make a video about?
Thanks for the video ... I'm a T-10 paraplegic for 38 years. I ask able-bodied people to try and pull up their pants while sitting down without using your legs. Then they will know what we go through every day. 🙂
Lol. Able bodied people still can't fathom even if they try!
Why you paralyze?it is because of syrinx?
I was in snowmobile accident when I was 13.
Just went through this...you can only go from a para to a quad with a second spinal cord injury. That needs to be made known so people won't panic. Erin Field just had a huge syrinx removed...it was just about to her brain stem. She did not get function back. Again, it's only a spinal cord injury that can make you worse people. Brittney, the name of this video is guaranteed to make people panic and they won't even watch the video and if they do, they will be hung up on the phrase, 'para to quad'. Please correct this. Really stupid question here...why don't they just take it out and how did they not notice it when doing all the surgery for the hardware? Really, really stupid question...why not just wear jogging pants and a sports bra and T-Shirt?
Um you're wrong. I can 100% become a quadriplegic. I know people thay have lost habd function from their syrinx
Respectfully, I am only saying what I have seen and been told by my neurologist. He told me that if nothing works it could eventually be life threatening. And a syrinx can't be removed. It can only be drained . It is just fluid.
@@EmpoweredPara if they lost anything, it was because the spinal cord was more damaged...a syrinx would do that for sure...you just left that part out. I've read comments here...you scared the beejeebers out of people. The name of the video should have been how a syrinx can change my function. you can't just go from a para t a quad.
@@morgancalvi6675 well I explain in the video that it is the syrinx that causes damage to the nerves. At least I thought I did lol
@@EmpoweredPara you probably did...but what I was trying to say is many will just start panicking and not even look at the video. Can they not remove it?