Can't say enough good things about this channel!!! Very, very good information explained in a clear and concise manner!! You definitely have a talent for teaching and counselling others. I can see this channel becoming HUGE!! Proud to know you as a fellow Canadian!

@EmpoweredPara

7 ай бұрын

Now I'm crying lol! Thank you. I have lots to improve on to make my channel better but I'll keep at it as long as you guys keep watching!

Man, do you ever provide a lot of information! I had to pause the video a number of times to wrap my brain around a lot of this. I’ve learned a lot from you. Prior to finding you, I had no idea that a SCI affects, and leads to, so many things. Kudos to you on your researching abilities. No wonder we all love this channel!

@EmpoweredPara

7 ай бұрын

Thanks!!!!

I am part of the 7% since birth in 87' and have a syrinx in 3 different parts of my spinal cord. The first is at L4-L5 which is also where my Spina Bifida is located, I have another located in my mid spine and a 3rd at the base of my spinal cord and neck. 2 of the 3 are inoperable or unable to be drained, if ever needed and the syrinx in my mid-back/spine, is the only one that can be drained if ever needed and is also the biggest syrinx of the 3. I was diagnosed with a tethered spinal cord in 2007 which caused severe damage to my spinal cord to where I can no longer walk or stand without the use of canes or a wheelchair for public use. I also am more susceptible to heat and cold, inconsistent tingling and numbness in 3 of my fingers on both hands, as well as loss of feeling/numbness of varying degrees from my waist down. The numbness/loss of feeling gets worse the lower you go below my waist. When I had my tethered cord released in 2007, my neuro at the time had said that it was the worst tethered cord she had ever seen and was absolutely amazed at how mobile I was still with all that damage and then within 1 month after surgery, the cord became tethered for the 2nd time and still is today, as i haven't had a 2nd surgery to untether it.

My brother had back in 1963 and he was C3/4 incomplete. He had a tough life being a Quad for 30 years

Very well done. Excellent research and presentation. Your visual contact with you audience, combined with your use of notes was exemplary. Way better than most public speakers. May I make one suggestion to make your presentation even better? Slow down a little bit, and pause more. It will give you time to breath, and help us as your audience to process the information. However, please don't take my suggestion too seriously. I repeat, your presentation was excellent. Well done.

@EmpoweredPara

7 ай бұрын

I do speak fast! I completely agree with you lol. I was thinking the same thing watching it back. I appreciate the feedback so much! Please keep it coming!

Best video ever, well done!

Love you Brittney, thanks for posting.

WOW! You've taken a topic with sparsely available information and completely explained it. What a gift you are, Britney! Your channel is priceless to many, and many to come as they find it. God bless you and yours!!! ❤

I became injured in 2020 and started going to pain management maybe in 2021 which they schedule my MRI every and I just found last month I have one but I had to meet with a different doctor due to scheduling and couldn’t even pronounce the word so your video had a life saver. Thank you for always talking about things that will benefit us with SCI in the long run ❤😊

❤nice information..

Thank you for making this, not many have heard of this - including doctors. I have Syringomyelia (but not a sci)

Very good presentation.

@EmpoweredPara

4 ай бұрын

Glad you liked it!

I actually had Syringomyelia prior to going paralyzed and didn’t even know it. Spinal stenosis caused my paralysis and went undiagnosed because the neurologist was “distracted” by the syrinx revealed by my first MRI in 2008. By the time I got a second opinion followed by emergency next day surgery, I was a paraplegic. Ironically the syrinx is causing my quadriceps and hamstrings to fight each other 24/7 with not control by me. My thighs are constantly in pain but look they belong to a body builder. I live in an area without a competent neurologist who is willing to offer care.

Been in a wheelchair for 20 years with a spinal cord injury and never heard of this before.

@EmpoweredPara

3 ай бұрын

It's really rare, fortunately!

I had cervical laminectomy C2 - C7 back in 1999 that allowed me to work another few years, but today I can no longer feel any of my limbs, hands or feet. Syringomyelia is A very cruel bitch. 20 years in wheelchair now, from A guy that had been very active Harley rider & auto mechanic. And my Dr. has decided to stop treating me.

@EmpoweredPara

7 ай бұрын

That's really hard...and scary. I know this may be my fate someday and I am trying to mentally prepare for it but not sure it's really possible to do before it actually happens. Praying my syrinx stays stable 🙏. Sending healing thoughts your way. Maybe the Falci Institute would be a good place for a second opinion?

It's great to hear the full explanation of some ttechnical terms that Google Translator don't seem to fin a right translation from english to spaniard or.. maybe we don't have a single word, that i know about.. , this technical/clinical terms; anyways, thanks for the info, the more i know the better i am imo.

I slowed the video speed down to 1/4th speed so I could see the Falci Institute for Spinal Cord Injuries name. many in the United States are very leary of a similar name here. I finally got the video stopped so I could read the name correctly. maybe gave a few more seconds on the research papers. thank you for all your research time and sharing your experiences. be blessed and well.

thanx

Thanks for the video really good info. I found out recently I have two syrinx, one C2-C5and another T2-T11 both about 6mm in diameter. I don’t have any known trauma to that area. Just had an appointment with a neurologist and she can’t explain why they would be there. So more imaging for now and we will see where it goes. I say this because I was having back pain and only found out about this after paying out of pocket for a full body MRI. All the drs were telling me it was nothing or just some normal degenerative stuff. Not so. Like she said there is not much that is known about how or why these form. Be your own advocate and know most drs and insurance companies are reluctant to help you get an answer. Even if you haven’t had any trauma if you are suffering back pain or other strange issues this needs to be ruled out.

@EmpoweredPara

5 ай бұрын

Good for you for advocating for yourself!

Thank you so much for sharing your story. I am a parent of a 16 year old boy. He had been very active, playing basketball. We noticed he had delayed reaction when playing sports. We also noticed fatigue, ringing in his ears and tingling on left hand. This was very concerning so I had him undergo an MRI exam. He was then diagnosed with syrinx on his spinal cord. We don't know what to do now to help and remove the syrinx. I am talking to children's neuroscience doctors. Is there a technology that can remove the syrinx? How long is the recovery process? Will he be able to play sports and lead a normal life again after syrinx surgery?

@EmpoweredPara

5 ай бұрын

I wish I could answer all these questions but I am not a doctor. I csn tell you that I know quite a few people with a syrinx and the progression seems to be slow and the treatments (surgeries) seem to be effective. I recommend contacting the clinics I mention in the video:) You can absolutely email me if you have more questions! empoweredpara@gmail.com

good to lison to.👍

Can it be drained or cut out

I have a incomplete spine cord injury, T9 my left leg is not doing anymore wat a want, but the last 2 month my hands are tikkels, no feeling or sleep, just like my left leg does, is that possible by a T 9 injury? I thought that it only was / is possibly by C injury…

Are you paralyzed because of your syrinx condition? Were you paralyzed before the surgery or after the surgery?

@hollielupton4145

5 ай бұрын

She has a video about how she got the injury.

Is it possible to contact you via phone and talk to you?

@EmpoweredPara

5 ай бұрын

you can email me empoweredpara@gmail.com

I am a complete T4 para in NC. I have a Syrinx of the thoracic cord extending from approximately T6 to T9. It was diagnosed in 2022 and my accident was in 2021. I started having increased back pain and my nerve pain is always terrible. I go to UNC chapel hill, NC to see a spinal cord specialist. Nothing has been done yet because they are “watching it”.

@EmpoweredPara

4 ай бұрын

My syrinx is mostly just "watched" also. It can sometimes feel scary to just wait and see but as long as you are vigilant about monitoring your symptoms then watching and waiting is often the best choice

Maybe I have this too.

@EmpoweredPara

7 ай бұрын

I hope not! But if you have some of the symptoms definitely get checked!

Question for you. Are you in a wheelchair because of recent surgery? And are not able to walk because of your condition?