Came to see if anyone is experiencing the debilitating pain like I am. 27 and finally found out that this is what has been cause me pain the last few years. The pain can get so unbearable at times 😩
I’m 28 and I can relate. My shoulders burn all the time and I feel like my muscles are getting weaker. I was diagnosed 3 years ago. I want to look for a support group specifically for people diagnosed with syringomyelia. This condition is so isolating. No one understands. Some doctors don’t even understand.
I’ll be 29 and had cervical surgery at 9 and just found out I have this along with herniated disc as a result of surgery. Going on 20yrs living with chronic pain. I could barely work, stand, sleep, hold bags etc life is miserable but good to know I’m not alone
I was diagnosed with a syrinx a month ago. It is likely i have had it and possibly a tethered spinal cord for my entire life. I am very symptomatic with leg and arm weakness, scoliosis, daily chronic headaches and bladder issues among many others. I see my neurosurgeon again on the 28th of june and i hope and pray that he will agree to drain it.
I'm really sorry to hear about your recent diagnosis and the challenges you've been facing. During this time, it's important to take care of yourself both physically and emotionally. I wish you goodluck in your next appointment
I'm trying to find a neurosurgeon to help me. I've been symptomatic for over two years. I have 3 syrinx, bulging disc and spinal cord inflammation. I'm handicap now. I can't walk and have severe trouble with motor functions and my central nervous system. Did you have the syrinx drained? How is your health now?
@@MedicalCentric I understand this but I can't find anyone to help me. It's severe. The only help I have is my mother and she just screams at me everyday. She is 72. My son is in college. I have no one to help me. I want to live. I want to see my grandchildren. I was completely health before this. I'm only 49 years old.
I have it along with a CSF LEAK and no one will treat me. This has been going on for at least 8 years, my lymphatic system is completely destroyed. I can feel it all. Our health system isn't what it used to be.
I understand that discovering you have tested positive for H. pylori after 10 years of stomach problems can be both a relief and a cause for worry, It's understandable to feel worried, given the duration of your stomach problems. However, with the right treatment, there's a good chance you'll experience relief from your symptoms. Remember to follow your doctor's instructions diligently
Just over 4 years ago i was diagnosed with syringmyelia x3 in my spinal cord after an assault I was also diagnosed with trigeminal schwannoma I had no symptoms yet the cysts totalled 20cm in my whole spine The trigeminal schwannoma is a nerve brain tumour I have had spinal surgery on the largest one at 10cm Its hard work mentally and physically
@@MedicalCentric it's a day at a time I'm the only patient here in my state that my Drs have seen with two rare neurological conditions It was very much a shock but after everything else I have been through in life I know I'm tough and resilient It's hard in some ways as I can't talk to any other patients with the sane two conditions I can only be supported by a brain tumour group who all have different tumour
@@SimranKaur-dg8gn They did surgery from T1 laminectomy with pleural shunt, only one syrinx operated on thus far the largest. 2 months in hospital I have left side weakness, numbness in pelvis, left foot and some in hand, right foot was slightly affected. Had to learn to walk again. Almost four years since surgery I'm still rehabbing it's a long long road I've also had to endure sterotatic ☢ radiation therapy 15 months after my surgery have 3 monthly MRI But it's also a long lonely journey
10 years ago I had spinal cord surgery to drain the syrinx and insert a micro catheter. I am still in daily chronic pain and suffer with fatigue and a range of other weird symptoms. Still looking for medication or treatment to help me.
Same here going 3 years it like I can't control my body temp always cold,cold sweats stomach issues bladder issues walk with a cane now always stiff 24/7 pain involuntary muscle spasms bad balance the list goes on
@@acegrxxve8627I’m sorry keep praying, I feel the same way haven’t have to use the cane yes but my balance is off too been going for 10 years, the last 5 is worsening especially when it cold I just can’t not walk just take baby steps, hang in there and keep praying God is good and all the time 🙏
The pain is SO BAD no painkillers have worked for me and none of my doctors have tried to help the pain. I feel so helpless and alone and scared. Now my right hand doesn't work anymore
Hang in there I’m going through this too. Have a bone tumor that led to this and I’m 40. I’ve been in pain since my 20s dealing with this . If u need to talk drop me a message
Thank you so much. I just got out of the hospital. The pain has been so bad that I had a shingles outbreak in my ear canal and in my eye because of the stress as well. A pituitary cyst was found during a scan for encephalitis. The doctor can't increase my pain meds now because I may need surgery in the future and I'm in so much pain. I've been in bed for over 8 weeks. This is a nightmare, @@geocraft96
Was diagnosed with Arnold Chairi Malformation 2, back in 2010. Also have Severe Spinal Stenosis. Have uncontrolled twitches. Med helps somewhat. For the last 2 plus years, have a 4 inch hole on the left side of my neck and head. They wanted to do C3-4 surgery a few years ago. However, I am on disability and am doing good to just pay the rent. No money-no surgery. My neck is as crooked as it can get. Neck is slowly shifting left and sounds like popcorn. Pain has moved down to both shoulders. Might also be responsible for the lower back pain. Been to numerous pain doctors an neurologists. Question is, can these cause the uncontrolled twitches? Any other options. Am staying away from chiropractors . My problems didn't start before age 42. Got really bad at 57. Spine is also curved.
I've been suffering with neck pain for the past 8 years. Severe pain every👏single👏day. Yesterday I got told it was Syringomyelia. I don't wish this on anyone
Hello I would like to know if/where/how do people get chiari malformation treated (from what the video shows at the 3:07 time in the video)? It seems like people can or would get chiari treated without a surgery based on what I saw at the 3:07 time in the video? Unless I am wrong?
@@Ggggsssssskkkkkkk I didn't have surgery on mine. My doctor said it won't do anything for me. I did get lucky and my weakness in my legs did improve. Not everyone improves like I did. I do hope the best for you
@@Ggggsssssskkkkkkk no.. don't have surgery.. surgery is not the permanent solution for this..I had surgery in 2011 but after it my problem increases nd i suffering weakness in my right hand..
I had a dream my dear friend had fluids on the Spine. He went into Surgery and came out crippled, then soon died! I wouldn't leave you for that, I'll take you with me wherever i go and protect you! I once worked as a live in CNA you would permanently be apart of my home and life! I would hire live in help for you too. That's nothing to despise, I don't believe if it happens to me, you would toss me away! I hope you'll always be around!
@CMMC989 That dream sounds deeply emotional and intense, reflecting a lot of care and concern for your friend. It seems like you have a strong bond and are willing to support and protect them no matter what. Your compassion shines through, and it’s clear you would do anything to ensure they are cared for, even in the most difficult situations. Sharing those feelings with your friend can be comforting for both of you, as it shows how much they mean to you.
I've been dealing with this for over a year, and my symptoms have gotten worse in the last 6 months, progressively worsening. The physiatrist I've been seeing has been beating around the bush and doesn't seem to be making any plans to treat it. My pain is daily and nearly constant now, I've been on medical leave for 4 months and can't pay rent or utilities now. I've demanded to be referred to a neru surgeon to have it removed but the one my physiatrist referred me to can't see me for a year. What should I do?
Don't give up. Keep advocating for yourself and search for treatment. Keep a pain diary and supply all your doctors with paperwork of your symptoms and research. Keep going. Good luck.❤
@@GloryDaze73 thanks. Just found out after being out of work for 8 months that I was misdiagnosed. No syrinx! But now they have no idea what's wrong with me
I've been suffering from it and i have been taking Gabapentin 400 mg prescribed by my neurologist but nothing change. I also had pain management procedure but still nothing change. I am too scare to get surgery
I advise that pregnancy with syringomyelia should be carefully managed under the guidance of a specialized healthcare team to ensure the best outcomes for both mother and child.
@@lisademoss9308 mine wouldn’t either and even tried arguing with me that I wasn’t in pain. Luckily there are a few left who do, what state do you live in?
Yes I did. I’m from Omaha and all the neurosurgeons out here said there was nothing they could do. I ended up finding a blog while researching options one night and came across the fact that there’s a doctor in Denver who knows how to untether spinal cords which helped but they couldn’t get rid of the cyst. I still have pain everyday but he was able to make it so I’m not constantly suffocating and struggling for each breath anymore which really helped
![[Live สด] การออกรางวัลสลากกินแบ่งรัฐบาล งวดวันที่ 16 พฤศจิกายน 2567](http://i.ytimg.com/vi/wPd7VFfWHIA/mqdefault.jpg)
Came to see if anyone is experiencing the debilitating pain like I am. 27 and finally found out that this is what has been cause me pain the last few years. The pain can get so unbearable at times 😩
I'm with you, I just got diagnosed a month ago. The pain is terrible❤️
I’m 28 and I can relate. My shoulders burn all the time and I feel like my muscles are getting weaker. I was diagnosed 3 years ago. I want to look for a support group specifically for people diagnosed with syringomyelia. This condition is so isolating. No one understands. Some doctors don’t even understand.
I’ll be 29 and had cervical surgery at 9 and just found out I have this along with herniated disc as a result of surgery. Going on 20yrs living with chronic pain. I could barely work, stand, sleep, hold bags etc life is miserable but good to know I’m not alone
I hope more people see this so more doctors and medicines are made and people are aware of this.
I hope all goes well for you. Recently found out I have a syrinx in thoracic spine
I was diagnosed with a syrinx a month ago. It is likely i have had it and possibly a tethered spinal cord for my entire life. I am very symptomatic with leg and arm weakness, scoliosis, daily chronic headaches and bladder issues among many others. I see my neurosurgeon again on the 28th of june and i hope and pray that he will agree to drain it.
I'm really sorry to hear about your recent diagnosis and the challenges you've been facing. During this time, it's important to take care of yourself both physically and emotionally. I wish you goodluck in your next appointment
I'm trying to find a neurosurgeon to help me. I've been symptomatic for over two years. I have 3 syrinx, bulging disc and spinal cord inflammation. I'm handicap now. I can't walk and have severe trouble with motor functions and my central nervous system. Did you have the syrinx drained? How is your health now?
@@MedicalCentric I understand this but I can't find anyone to help me. It's severe. The only help I have is my mother and she just screams at me everyday. She is 72. My son is in college. I have no one to help me. I want to live. I want to see my grandchildren. I was completely health before this. I'm only 49 years old.
I had mine drained 3 years ago and I was better off before the surgery now I have more symptoms and more pain
Be careful! The surgery can leave you worse off!! I wish it wasn't so...
This condition is so painful.. so many doctors have told me they can’t do anything.. I suffer everyday.
Sorry about the condition, Please stay strong it gets better.
I also suffer everyday!
It’s absolute hell. You’d wonder how you could be so unlucky to have this very rare condition 😢
I got misdiagnosed with cervicalgia until my MRI last week and it’s like a whole eye opening event for me
I have it along with a CSF LEAK and no one will treat me. This has been going on for at least 8 years, my lymphatic system is completely destroyed. I can feel it all. Our health system isn't what it used to be.
I have it and it’s a living hell …painful everyday for decades and decades with NO SOLUTIONS to it
I understand that discovering you have tested positive for H. pylori after 10 years of stomach problems can be both a relief and a cause for worry, It's understandable to feel worried, given the duration of your stomach problems. However, with the right treatment, there's a good chance you'll experience relief from your symptoms. Remember to follow your doctor's instructions diligently
@@MedicalCentricreally? What sort of treatment...? Nothing seems effective and at best things are experimental.
Just over 4 years ago i was diagnosed with syringmyelia x3 in my spinal cord after an assault
I was also diagnosed with trigeminal schwannoma
I had no symptoms yet the cysts totalled 20cm in my whole spine
The trigeminal schwannoma is a nerve brain tumour
I have had spinal surgery on the largest one at 10cm
Its hard work mentally and physically
Sorry to hear that, I hope you are doing much better now
@@MedicalCentric it's a day at a time
I'm the only patient here in my state that my Drs have seen with two rare neurological conditions
It was very much a shock but after everything else I have been through in life
I know I'm tough and resilient
It's hard in some ways as I can't talk to any other patients with the sane two conditions
I can only be supported by a brain tumour group who all have different tumour
@@deethom5902 My brother also this. what after surgery recovery is better or surgery have side effects?
@@SimranKaur-dg8gn They did surgery from T1 laminectomy with pleural shunt, only one syrinx operated on thus far the largest. 2 months in hospital
I have left side weakness, numbness in pelvis, left foot and some in hand, right foot was slightly affected. Had to learn to walk again. Almost four years since surgery I'm still rehabbing it's a long long road
I've also had to endure sterotatic ☢ radiation therapy 15 months after my surgery have 3 monthly MRI
But it's also a long lonely journey
you are strong and resilient. We have to be. We are fighting for our lives. @@deethom5902
Very detailed💯💯❤️
Glad you think so!
10 years ago I had spinal cord surgery to drain the syrinx and insert a micro catheter. I am still in daily chronic pain and suffer with fatigue and a range of other weird symptoms. Still looking for medication or treatment to help me.
Same here going 3 years it like I can't control my body temp always cold,cold sweats stomach issues bladder issues walk with a cane now always stiff 24/7 pain involuntary muscle spasms bad balance the list goes on
@@acegrxxve8627I’m sorry keep praying, I feel the same way haven’t have to use the cane yes but my balance is off too been going for 10 years, the last 5 is worsening especially when it cold I just can’t not walk just take baby steps, hang in there and keep praying God is good and all the time 🙏
The pain is SO BAD no painkillers have worked for me and none of my doctors have tried to help the pain. I feel so helpless and alone and scared. Now my right hand doesn't work anymore
Hang in there I’m going through this too. Have a bone tumor that led to this and I’m 40. I’ve been in pain since my 20s dealing with this . If u need to talk drop me a message
This is my story as well, the pain is so horrible in my legs that I can't walk and no one will help me.
Im going thru this disease too if you ever need someone to talk to im here
Thank you so much. I just got out of the hospital. The pain has been so bad that I had a shingles outbreak in my ear canal and in my eye because of the stress as well. A pituitary cyst was found during a scan for encephalitis. The doctor can't increase my pain meds now because I may need surgery in the future and I'm in so much pain. I've been in bed for over 8 weeks. This is a nightmare, @@geocraft96
Pain medications don't work for me but I've found relief with CBD and CBG
Was diagnosed with Arnold Chairi Malformation 2, back in 2010. Also have Severe Spinal Stenosis. Have uncontrolled twitches. Med helps somewhat. For the last 2 plus years, have a 4 inch hole on the left side of my neck and head. They wanted to do C3-4 surgery a few years ago. However, I am on disability and am doing good to just pay the rent. No money-no surgery. My neck is as crooked as it can get. Neck is slowly shifting left and sounds like popcorn. Pain has moved down to both shoulders. Might also be responsible for the lower back pain. Been to numerous pain doctors an neurologists. Question is, can these cause the uncontrolled twitches? Any other options. Am staying away from chiropractors . My problems didn't start before age 42. Got really bad at 57. Spine is also curved.
I'm 57 as well and no pain medication works.
I've been suffering with neck pain for the past 8 years. Severe pain every👏single👏day.
Yesterday I got told it was Syringomyelia. I don't wish this on anyone
Sorry about the condition, I hope you get better soon
I also have syringomyelia, I feel the same way.
What is the treatment for this
Hello I would like to know if/where/how do people get chiari malformation treated (from what the video shows at the 3:07 time in the video)? It seems like people can or would get chiari treated without a surgery based on what I saw at the 3:07 time in the video? Unless I am wrong?
I had a syrinx that went from c2-t12, 8mm wide in one section. Had surgery and had a shunt installed. Not fun times.
Are you better now? How were u post surgery?
I am suffering this ,last 7year
How can i do
Pls tell me
Thanks for the video. I have this and it looks like I need surgery. I have weakness in the legs. Will that weakness in my legs go away after surgery?
Hey bro do u have surgery ? After surgery your weakness still or not? Plzz replay ... because I have this
@@Ggggsssssskkkkkkk I didn't have surgery on mine. My doctor said it won't do anything for me. I did get lucky and my weakness in my legs did improve. Not everyone improves like I did. I do hope the best for you
@@MetroidMeisterwhat your syrinx size
@@Ggggsssssskkkkkkk 5mm and it's a stable one
@@Ggggsssssskkkkkkk no.. don't have surgery.. surgery is not the permanent solution for this..I had surgery in 2011 but after it my problem increases nd i suffering weakness in my right hand..
I had a dream my dear friend had fluids on the Spine. He went into Surgery and came out crippled, then soon died! I wouldn't leave you for that, I'll take you with me wherever i go and protect you! I once worked as a live in CNA you would permanently be apart of my home and life! I would hire live in help for you too. That's nothing to despise, I don't believe if it happens to me, you would toss me away! I hope you'll always be around!
@CMMC989 That dream sounds deeply emotional and intense, reflecting a lot of care and concern for your friend. It seems like you have a strong bond and are willing to support and protect them no matter what. Your compassion shines through, and it’s clear you would do anything to ensure they are cared for, even in the most difficult situations. Sharing those feelings with your friend can be comforting for both of you, as it shows how much they mean to you.
I've been dealing with this for over a year, and my symptoms have gotten worse in the last 6 months, progressively worsening. The physiatrist I've been seeing has been beating around the bush and doesn't seem to be making any plans to treat it. My pain is daily and nearly constant now, I've been on medical leave for 4 months and can't pay rent or utilities now. I've demanded to be referred to a neru surgeon to have it removed but the one my physiatrist referred me to can't see me for a year. What should I do?
Don't give up. Keep advocating for yourself and search for treatment. Keep a pain diary and supply all your doctors with paperwork of your symptoms and research. Keep going. Good luck.❤
@@GloryDaze73 thanks. Just found out after being out of work for 8 months that I was misdiagnosed. No syrinx! But now they have no idea what's wrong with me
I have syringomyelia could you help me please
I've been suffering from it and i have been taking Gabapentin 400 mg prescribed by my neurologist but nothing change. I also had pain management procedure but still nothing change. I am too scare to get surgery
I am sick siringomeylia until now i not walk
I'm sorry to hear about your condition with syringomyelia; it's essential to consult with your healthcare provider for the best management options. ❤️
Can I pregnant with Syrincomelia
I advise that pregnancy with syringomyelia should be carefully managed under the guidance of a specialized healthcare team to ensure the best outcomes for both mother and child.
Is Pragnancy possible with Syrincomelia?
Hell on earth.
Absolutely & my Dr's won't treat it.
@@lisademoss9308 mine wouldn’t either and even tried arguing with me that I wasn’t in pain. Luckily there are a few left who do, what state do you live in?
@@nalabishop402 I live in Indiana. So sorry to hear that you have the same problem 😞. Were you able to get any treatment?
Yes I did. I’m from Omaha and all the neurosurgeons out here said there was nothing they could do. I ended up finding a blog while researching options one night and came across the fact that there’s a doctor in Denver who knows how to untether spinal cords which helped but they couldn’t get rid of the cyst. I still have pain everyday but he was able to make it so I’m not constantly suffocating and struggling for each breath anymore which really helped
@@nalabishop402 Ameh, I'm so happy for you!! 😊❤