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

4 жыл бұрын

Thank you Camille, I really appreciate you saying this. Wishing you the best.

@pache2112

2 ай бұрын

That is SO true! You aren't alone.

Thank you for spreading awareness of Syringomyelia & Syringobulbia!

@gatesbrainhealth2639

4 жыл бұрын

Thank you Shanna B, wishing you all the best as well!!

@homemagar3670

3 жыл бұрын

@@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 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.

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. ❤️

@pache2112

2 ай бұрын

Same here! Hang in there!!

Hello Dr. Gates I have a 33 year old son with Digeorge Syndrome. He is non-verbal. He has been having headaches about a year and also periods of manic-like behaviors whete he will go 4 or 5 days without sleep and apparant rapid thinking. I am his gardian and he lives with me. Reseatching for answers I ran across and watched some videos about Chiara malformation and my son has many signs/symptoms inline with that dx . He also has an occult spina bifida diagnosed when he was very young. He also has 2 copies of MTHFR gene I know which one but cant think ofnit right this second. I researched more and found out 19:55 Chiari malformations are frequent in patients with digeorge. Syndrome. The mainstream medical doctors are really clueless in many ways. I would like to do a phone consult if possible . Im goung to call your office and see if I can set one up. J

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

@gatesbrainhealth2639

4 жыл бұрын

Hi Kim, how about your email us at info@gateswaytohealth.com. I'm familiar with this but I can't talk about it on a public forum.

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.

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

@gatesbrainhealth2639

4 жыл бұрын

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.

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

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😢

@gatesbrainhealth2639

2 жыл бұрын

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

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...is it possible to have Chiari malformation but the syrinx been located in the T10 and not in the cervical area ???

@gatesbrainhealth2639

3 жыл бұрын

Yes, I have seen that before.

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??

@gatesbrainhealth2639

2 жыл бұрын

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.

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.

Does a syrinx and vasculitis have a connection?

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.

@gatesbrainhealth2639

3 жыл бұрын

Oh my goodness. My heart goes out to you and give us a call if you want me to look at your case. Nonetheless, wishing you the best!

@TuggerAbbey

3 жыл бұрын

@@gatesbrainhealth2639 so you have experience with Syringomyelia or Klippel-Feil

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!

@gatesbrainhealth2639

4 жыл бұрын

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.

@PDM-95

4 жыл бұрын

@@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.

@gatesbrainhealth2639

4 жыл бұрын

@@PDM-95 well you are in my thoughts and I really hope the surgery goes well. Keep us updated on your progress!!

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 😢

@stephbrowning1690

3 жыл бұрын

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

@nyxthecat9545

3 жыл бұрын

@@stephbrowning1690 thank you the link I’ve joined so hopefully see you there

@nyxthecat9545

3 жыл бұрын

@@T-storm1 I wish I had a dr like him in London

@gigiguzman2747

3 жыл бұрын

@@T-storm1 this doctor is in Las Vegas? I live in Las Vegas and it’s quite difficult to find knowledgeable doctors here.

@shellybell1108

3 жыл бұрын

@@nyxthecat9545 your symptoms sound like Chiari Malfunction. I would have your doctors do a brain MRI to rule that out.

Hi sir I would like to visit your clinic for hypothyroidism but I live in India can give you me online advice for it

@gatesbrainhealth2639

4 жыл бұрын

Hi, please give our office a call to discuss this on Monday 833.374.2837 or email us at info@gateswaytohealth.com

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

@gatesbrainhealth2639

4 жыл бұрын

I hope that you find some improvement in your symptoms this year!!

@joegarcia2400

3 жыл бұрын

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

@stephbrowning1690

3 жыл бұрын

@@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

3 жыл бұрын

Steph Browning and what you’re explaining is it will continue to get worse if I don’t get the surgery?

@stephbrowning1690

3 жыл бұрын

@@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