What is syringomyelia?
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- Опубліковано 19 вер 2024
- At the NORD Rare Disease and Orphan Drug Breakthrough Summit in Arlington VA, we talked with Beth Nguyen, RN, a patient with syringomyelia, about the rare disease in which cysts form inside the spinal cord. These cysts lead to multiple symptoms that impacts the person's ability to walk, breath, digest, etc.
For more information, visit www.wstfcure.org
I have syringomyelia and it sucks! The physical pain associated with this condition is unbearable at times. There is also bowel and bladder incontinence. God Bless anyone and everyone that has been affected by this rare condition.
Same here bro
Same problm
We love you Beth! You are one of my heroes.
When found out that
had this, I actually talked with Beth Nguyen and
she helped me
immensely. You could
say that she saved my life.
I injured my neck in 2009 and the peripheral neuropathy only started to show up around 2015/2015. I always had pain in my neck but it was more of an annoyance with restricted movement. When I had the mri and the doctor told me what it was , once I looked it up , I thought my whole life was going down the drain. Definitely hasn’t been easy to live with and I always advise people to never take their health for granted.
Brother,, how can i contatc you..??
c1-c2 fixation is the new modality of treatment. No shunt required. No decompression required. Just Fixation. This will improve condition dramatically that you will be in aww... Thanks to Prof Dr. Atul Goel for making this surgery.
I travel with a handout just in case I end up in a hospital. It is disheartening how I consistently have to inform nurses and doctors what it is and what it does to the body, let alone my own.
I just found out I have a 4.5 cm cyst in my thoracic spine area.
I just got diagnosed with a syrinx in my T2-T5 a month ago. Pretty certain i have had it my entire life due to the symptoms and chronic pain i have had all my life.
If a patient is symptomatic with no obvious trauma or tumor, are surgeons willing to do the shunt procedure?
I have just been diagnosed with a syrinx at L5 and L6. I am feeling so scared and overwhelmed.
I have one at c3 to c5 and a second one forming in my t spine. It is really tough and I am so sorry you are going through this. It is very overwhelming and all I can say is don't push yourself too hard. Join a support group and know it is not your fault that you are a complicated case. You are loved and important, even if there are times you feel the exact opposite. Losing independence and function of your own body is scary but you make a difference. Always remeber that and do the best you can. Unfortunately people who do not have this disease do not understand (that will include loved ones) how much it impacts our daily lives. But those who do have it understand. You are not alone and it is not your fault! Sorry if I seem to be preaching, it's just I wish someone would have said this to me during the struggles of getting diagnosed.
@@DSbubsnconky I LOVE YOU GANG GANG TRULY WHAT I NEEDED TO HEAR 😪😪😘❤❤🙏🏾
@@Deevirgotarot2222 LOVE YOU TOO! I'm going to look at what support group I am in on Facebook. Then I'll post a response to this with it so you can join if you want. That way you can look me up and can fb messenger me if you ever need a fellow syringo person to just vent or get advice!!
@@Deevirgotarot2222 here are the support groups I know of and am a memeber of: 1. living with syringomyelia, 2. syringomyelia, Chiari, Chronic and Rare diseases and 3. Syringomyela (syrinx)is are the groups I am in for syringomyelia. So many people in there will understand and support you! I hope it helps or at least brings you comfort. We have to be our own advocate, doctor, psychologist and researcher all the time. I hope this helps 🙏 💕
@@DSbubsnconky thank you ❤❤
This disease is killing my strength to keep pushing forward.
My wife has syringo cyst on spine. She is 37 & we have 8 young kids. She has major depression and not being herself lately. Life been really rough for the last 2 years. She isn’t the same person I married. Kids and I are extremely worried.
I am so sorry to hear that. I was recently diagnosed with syrinx too and I know what she is going through ♥️
I am a 56 year old male dx 2020 with syrinx in thoracic T12 and having too many ailments to list. Been healthy most of my life and this came on suddenly and has been a steep and rapid decline over past two years. I too am not the same person as I was because of chronic pain and many relationships including family are being damaged because I have isolated to rest in hopes to feel better. Also difficult to control anger at times when others make hurtful comments in disbelief. Just to let you know that WE who have this are the same people deep down inside and we do not want loved ones to leave or stop trying to listen or be supportive. I am single and 3 siblings who don’t understand what I have because I look the same. I am unable to work and declined disability. Two parents close to 90 and I am looking at potential homelessness soon with debilitating leg pain and no help. Dire situation and doctors deny your symptoms as related to the syrinx.
@@nahord33 thanks for story. The cyst I believe automatically qualifies for disability benefits.
@@ddtrahan yes thank you, you’re right but what I found is it doesn’t guarantee anything. NH is my state and they were very difficult. I should’ve hired a lawyer to help me fight. Also the neurosurgeon who dx me would not side with me even when I told him and my PCP that I was having a lot of pain and stiffness etc… I needed to find a second opinion and one that understands this disease no matter the size of the syrinx. I wish you all the best with everything.
I used to be a healthy strong man without a negative thought in my head. I’m nowhere even close to that person anymore , so I can relate to your wife in a major way. The biggest struggle is mourning the healthy version of yourself and trying to force yourself to except the fact that you will never be that version of yourself again. 😞
I wish I could contact her I got decompressed last year but I see minimum progress and the constant pain
I'm suffering with this condition since 2010, it appeared after my discectomy surgery.. c5-c6 syringomyelia pain is so depressing, debilitating and so stressful..
I also have a cyst at C5-C6. My neck and shoulders are so stiff it’s unbearable having social interaction sometimes. People don’t understand why I’m stiff which causes anxiety which re-enforces my symptoms. Do you relate? Has your syrinx expanded since 2010? Any tips on how to cope? (Sorry for all the questions, but it’s rare to find someone else who is experiencing this condition, in the exact place)
@@Randomhumaan it grows in a very minute only but the damage that it has caused is a lot.. i undergone physical therapy from time to time, taking meds prescribe by my doctor. Collagen is one of my maintenance so that stiffness may lessen. I wear soft neck collar everytime I travel because no forward neck flexion is advised.
@@orikopuppy I just bought some collagen supplements and I’m about to start physical therapy! I hope it helps. A soft neck collar is a good idea….I might look into that. Do you mind if I ask for a recommendation? Also I’m impressed that you wear it during travel. I feel like I wouldn’t be confident enough to wear it outside of my house 😂 you’re right though. Screw what strangers think, this condition is too painful to not prioritize ourselves
@@Randomhumaan Nice, collagen is good and take Vitamin B6, B12 too it also prescribed by my Doctor. Yes, don't mind others, wear a soft collar and it will surely give you relief like me. I actually wear it at work because this past four days because of stressful computer and paper works.
One of mine is from C6 to T3 and the other is from from T3 to T12. There is a small gap in the C6 area, so I have to assume that it is not one long one.
I was diagnosed in January of 2021. Doctors don’t seem to know much about it. It’s so painful and I have symptoms all over my body. I’ve tried Gabapentin and Baclofen, neither of which helped much. I’m currently on Cymbalta, which helps a little with the pain, but not much. I know opioids would help, but doctors don’t want to prescribe them. It’s awful.
Ask to see a pain management doctor. That's their job.
@@JoeVinson I saw one in early 2021 and all he wanted to talk about was epidural injections. No way am I letting them inject anything back there!
I feel your pain my dear. I have the burning or tingling in my face , hands and feet. The pain in the back of my head and for about the last 5/6 months , I haven’t been able to sleep at all. Doctor gave me gabapentin also multiple times. But I always couldn’t bring myself to take them and have been always trying natural remedies. But recently out of desperation, I took a gabapentin before bed to see if I could get some sleep. I woke up in tue middle of tue night and felt horrible. It really is hell on earth.
I was told no epidurals because of my condition
Im having the problem and im scared...will it happen again after surgery
It can.