I wish my doctors would be willing to learn about this. I feel I am dismissed when I present my symptoms to doctors, no one acknowledges or watches the syrinx for growth. So glad you are able to help those in need. We are a neglected community. Thank you for this video.
@@gatesbrainhealth2639 hello dr i have syringomyelia and it is very difficult for me to walk stand and muscle weakness hand and leg also weaknesses i am taking medicine but still symptoms i have what should i do and how many years after we have to do surgery without surgery how we can control syringomyelia? I herd surgery is danger and from syringomyelia will be pyaralise is that true please help me.
I have have this condition. My syrinx is micro , cannot be removed. Had C 5 through C 7 cervical 2010. Pain stated back in 2005. I still have daily pains. Now I believe syrinx has grown. Unbearable pain. Weakness. My right lungs not functioning ? Constant continuation. Extreme sternal Chest pain. Doing all the necessary scans at this time. I understand your pains. ❤️
I was injured when giving birth to my daughter by the anesthesiologist. The doctors and hospital covered it up for eleven years and once I was finally diagnosed I realized how it happened because I had a trauma when the doctor was doing the spinal block. I was not able to bring a law suit because of the time involved. I’m in California where the Mal practice laws are 3.5 years or one year from knowledge, but after eleven years of being covered up no lawyer would take the case. I am damaged for life and disabled and the hospital and doctors got paid to do this to me. They also got paid for eleven years while running many tests and knew what was wrong with me all along. I don’t have health insurance so I’m not being monitored as I continue to slowly progress. I’m damned angry! I’m in pain and dysfunction with no help because I can’t afford it. This should not of happened, but certainly I shouldn’t have been left to struggle alone.
What is the difference between menagitus and syrnix can you have it removed if only 3mm I am taking gabapentin and flexarial and it's not working anymore what are my options
Thanks so much for the information I have Syrinx and mine is is not big enough to operate on was told the Syrinx is not what's causing the Pain in my legs and back I have scoliosis as well but can't get a doctor to just help me Im in south Carolina
Frustrating, I have seen a number of patients like you and I'm saddened to hear that doctors do not give their patients a better explanation of pain/nocioceptive physiology.
Hello Dr., Did you ever see a patient with a syrinx (no chiari), classical tethered cord and klippel-feil? That is my case, and haven’t found a doctor that can understand and explain what’s going on in my body😢
I have seen syrinx with no chiari and tethered cord, but not these together with Klippel-Feil. Contact our front desk if you want me to evaluate your case (775) 507-2000
There is a syrinx measuring 2.5 cm in length and 3 x 3 mm and axial dimensions spanning T3-T4. I also have There is also central canal visualization throughout the majority of the thoracic spine. What's this mean doctor sir please
Need better scanning systems. DMX rays, sit/stand MRI. Much more common than first thought. Mostly has to do with structure, bad posture, bad cervical curve then add a fall or whiplash. Hard to diagnose if laying down in scan. More common in people higher on the hypermobility spectrum. Banging around your brainstem , blocking fluid then fluid will find path of least resistance. Fix your posture. Thanks doc.
My daughter in law is a C2 spinal cord injury. She’s not a complete. She was in a car accident in 2010 she was 24. She has a lot of nerve pain. She would be walking but she is a type 1 diabetic. When they gave her steroids for the the inflammation it almost killed her. She’s 100% dependent. She has use of her left arm. My son has her walking of course she can’t jump up and go to the bathroom. I know I’m grasping at straws but I’m curious if you think there is any type of therapy that can be done to bring back more movement? Or if you have any advice on nerve pain.
Hey dr gates I have a question. I’m 27 male former competitive athlete I was diagnosed with a mid-level thoracic syrinx hydromyelia pretty small a year ago I’ve also had pressure in my temples for the past two years my doctors are telling me that it’s perfectly OK for me to go back to do weight lifting and not limit myself would me doing weights again not only aggravate the syrinx??
Great question. I can't give specific advice to your situation as I haven't looked at your scans or done an exam on you. If it were me I would be cautious of forceful valsalvas while lifting, grunting, tight weightlifting belts etc. If it were me I would stick more to high reps, body weight exercises, and have someone watching my neurological signs through neurological exam, symptoms as well as regular MRI's to ensure there is no progression rostrally or caudally of the syrinx.
I have Syringomyelia and Klippel-Feil Syndrome and need a Doctor with experience with someone like me. I am getting worse and worse and have been looking for a doctor for 15 years! My pain is not controlled because doctors don’t seem to think my fusions, osteophytes and syrinx cause pain.
I wish my doctors could find out why I’m so much pain I have a cervical thoracic syrinx which is small however I suffer with a lot of headaches,neck lower back and leg pain my left leg is also weaker than my right,and I have numbness on my left side and all I’m getting told is my syrinx is to small to cause me pain go away type of thing I feel I also have fibromyalgia but they won’t test me for that so I’m at a loss 😢
Trouble is the drs don't no half of wat we go thru and no syrinx is too small to cause pain come and join my face book support group hun at least yr have support facebook.com/groups/1650855131800205/?ref=share
Any chance this diesease could be lsd induced? I have a strong feeling ive been drugged since it fits the timeframe of my symptoms and am working on a vivil suite. Just finished my deteathering operation. Any information could really help thanks!
Hello Dr. Gates . I have a question for you . I’m a very complex case of Syringomylie. Have you ever heard of a spinal cord running all the way down to the tailbone? Thank you , Kim
I am hlab27 positive, have an elevated ANA. Since my sacrum does NOT show degradation on the MRI, my rheumy called my condition non-radiographic ankylosing spondylitis or non-radiographic axial spondyloarthritis. I have pain all day, everyday in the neck, mid-back and low back. My neurosurgeon has recommended, and I am scheduled for January 10th, to have an artificial disc replacement of c5-c6. My most recent MRI says that I have "an unchanged 1 x 7 mm in AP and craniocaudal dimension syrinx. Do you think that this syrinx could actually be the culprit for all of my constant pain? Below is the actual finding of c5/c6 and C6/C7: At C5/C6: Congenital hypoplastic pedicles. Moderate loss of disc height. Low-grade posterior disc osteophyte complex. Relatively unchanged asymmetrical left greater than right posterior broad-based disc bulge measuring up to 4.5 mm on the and 3.5 mm on the right causing complete effacement of the ventral epidural space with flattening of the ventral aspect of the cord/severe spinal canal stenosis. Severe bilateral neuroforaminal stenosis/severe bilateral exiting nerve impingement. No evidence of cord edema or myelomalacia. At C6/C7: Congenital hypoplastic pedicles. 2 mm right foraminal focal disc protrusion causing moderate right neural foraminal stenosis. 2 mm circumferential dis bulge extending to left neural foramina causing mild to moderate left neuroforaminal stenosis. No high-grade spinal canal stenosis. An unchanged 1 x 7 mm in AP and craniocaudal dimension syrinx. Under Impressions, it says: Diffuse low-grade bone marrow signal throughout the cervical spine. Correlation with CBC is recommended to rule out any myelodysplastic syndrome/anemia. In the Thoraacic spine, there is a lot going on as well. multiple paracentral annular fissures. Disc protrusion impressing on the right ventral aspect of the spinal cord. In the lumbar spine, "there is diffuse marrow hypointense signal comparable to the prior examination. L4/L5: posterior disc osteophyte complex, Grade I (3 mm) anterolisthesis of L4 upon L5 with associated disc under-coverage causing severe right and moderate to severe left neural foraminal, severe bilateral lateral recess stenosis. At L5/S1: Unchanged 1.3 cm posterior central more towards right annular fissure/tear with a superimposed 4 mm disc bulge. A Schmorl's node along the L5 inferior endplate with surrounding marrow edema. Sorry for all the details. There is so much more. This is just some of what stood out to me. And to be honest, I do NOT know what the majority of these issues are. Whenever a neurosurgeon or PCP or nurse practitioner take a look at the notes, they say that I've got so much going on, but they do not really elaborate. So the plan right now is to have the disc replacement in at C5/C6 and fusion in the lumbar spine. But like I mentioned earlier, I wonder if the syrinx plays any role in the issues in the neck. I also have constant pain in the middle of my spine, just below the shoulder blades. All of my pain is essentially local pain. I have little to no radiating pain. If anyone that sees this has any suggestions, please let me know. I'm at my wit's end, and feel like having surgeries to reduce even a small amount of the pain outweighs the constant hell that I have been enduring. Thank you!
Hi Michael, if you wanted to discuss this in a consultation that would allow me to discuss this in much greater detail and possibly explain all of this in a way it makes sense. In the meantime keep following up with your doctors and I'm wishing you all the best.
@@gatesbrainhealth2639 Thank you! I guess for now, I'm going to move forward with the surgeries. I had an oncologist say that if there were only issues in a couple of spots, then go for the surgeries. But since there are issues all up and down my spine, he said he wasn't sure how much(if any) relief I would get from the surgeries. The neurosurgeon that I got a second opinion from suggested that I try to get my inflammation markers lowered for a few months first. If I was still having pain from the mechanical issues, he said THEN give surgery a try. My surgeon is doing the Mobi-C disc replacement, while the second opinion neuro was against replacement and all for fusion. I suppose doctors/surgeons will be all over the board regarding their plan of action and specific preferred methods of surgery. The whole process has been overwhelming and can cause analysis paralysis.
Hi I have both chiari malformation and syringomyelia but since my forum magnum decompression surgery the syrinx itself has shrunk very significantly to just around my c spine it was all the way to the conus before. But I have lost sensation on my right side o cant feel heat cold pin prick pain I have loads of medical conditions a list of 13-14 I have severe pain can barely walk as I cant balance my feet feel like thy r burning alot too. The list is endless
I’m scheduled for surgery for same Thing. Do you recommend I even go through with surgery? The syrinx itself is real small but the Chiari will be decompressed. I’m afraid and still very anxious since I don’t know what to expect
@@joegarcia2400 if u have a syrinx then It will probably get worse over time which means the worse it gets the more it will crush the spinal cord and nerves causing extensive damage.
@@joegarcia2400 I can only tell you what I no hun I have a support group I created on Facebook called chiari malformation & syringomyelia support group the picture is black and purple with loads of words on of symptoms
