Bobby Jones CSF: Ask the Expert with Dr Ulrich Batzdorf

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While Chiari malformation has become known over the past decade as a much more common disorder, syringomyelia remains considerably more rare. It is also potentially more serious if left untreated.
Dr. Ulrich Batzdorf is a pioneer in the study of syrinx diagnosis and treatment, who currently sees patients in the clinic at the University of California - Los Angeles. Dr. Batzdorf leads an in-depth discussion about syringomyelia: what is a syrinx? How does it form in the spinal cord? What do Chiari malformation and tethered cord have to do with syrinx development? What is the difference between "syringomyelia", "hydromyelia" and a "residual central canal"?
Dr. Batzdorf answers all these questions and additional questions posed in real-time by patients and caregivers.
This presentation was given on Thursday, June 11, 2020 and was presented entirely online. (2020)
Note from Bobby Jones CSF: We want to take a moment to sincerely thank all those who donated in support of this virtual presentation. No one at the organization was expecting that much generosity during such a difficult time for us all. From the bottom of the hearts of our boards, staff and volunteers, we want to thank you for your donations. Your kindness continues to motivate us and makes us all the more certain that this work is valuable and helping the people who need it. Thank you.
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1:40 - Dr. Batzdorf introduction
4:31 - Why Dr. Batzdorf is interested in syringomyelia and the history of syringomyelia study?
6:40 - Some basics: what are the meninges and the cerebrospinal fluid?
12:40 - What causes Chiari malformation?
15:15 - Primary spinal syringomyelia
16:33 - Primary spinal syringomyelia caused by injury or scarring
17:55 - Primary spinal syringomyelia caused by obstruction of CSF flow or compression
19:15 - Arachnoid cysts
20:00 - Tumor cyst vs. syrinx caused by tumor
20:44 - Typical description of a syrinx
22:14 - Dilated central canal vs. syrinx
24:10 - If a dilated central canal, then what are the symptoms from?
25:39 - Does a dilated central canal mean someone is more likely to develop a syringomyelia?
27:17 - How do we think a syringomyelia is formed?
30:23 - How do we think about treatment of syringomyelia? What about shunts?
32:53 - Complications: meningitis and adhesions
34:36 - Can Chiari symptoms worsen after a trauma (car accident), etc.? What about strain?
38:29 - Do you recommend waiting to operate if a patient has a syrinx? Do you operate right away? And when decompressing, what is your take on opening dura or resecting tonsils, etc.?
44:19 - Does syringomyelia always go away after surgery? Or, is it normal for it to sometimes stick around after surgery?
45:53 - Can syrinx cause something like seizure or other neurological symptoms?
51:20 - Can something like bone spurs cause symptoms similar to Chiari by blocking CSF flow?
53:24 - Can anterior cervical discectomy be an appropriate treatment for a syrinx?
54:31 - Possible role that tethered cord plays in the size and symptoms of syringomyelia? Would detethering help?
58:54 - Is there a connection between Chiari, closed spina bifida, cancer and/or autonomic symptoms?
1:02:42 - If there is one thing you could do to change neurosurgical care for connective tissue disorder patients, what would it be?
1:04:13 - If before surgery, symptoms would resolve with a cervical collar or similar treatments, would this be okay post-surgery, too? Any considerations for scoliosis?
1:08:01 - Do you recommend Chiari patients have genetic testing for connective tissue disorders or anything else?
1:09:04 - Do we know the percentage of people with spinal cord injury who end up developing syringomyelia?
1:11:23 - If a patient is still symptomatic after surgery, what else can that patient do?
1:15:36 - Conclusion

[@the_anxious_autistic]

Thank you for this information! I was a syrinx from c6-c7. I had a sports injury several years past and i'm just now finding out why i've been in severe pain in the neck, shoulders and weakness in my hands,

[@stephtaylor3422]

Good evening, I wanted to comment to just support raising awareness of syringomyelia. I am a nurse, but for the purposes of this post I have a syrinx at T7 level last measured 4.7cm. Unfortunately I live in the UK so treatment for syringomyelia is hard to come by! I have scoliosis and reduced lumbar lordosis, concavity to the right, now arthritic facet joint, and spondylosis. For me this is the result of a horse riding accident. So as a person effected it may be useful to consider the day to day effects for people. I am upright, and walking firstly, I am head of quality working for a clinical commissioning group, and have a husband and child. However having been injured at 27 years old, now 39, for you and your colleagues, the degenerative element is very important to note when you see your patients. The progressive limb weakness, is very notable, the altered heat sensation, and neuropathy are a day to day battle for patients. Chronic pain is a real battle, and with priorities set to reduce reliance on medication, my experience in the UK has been one of battling. I find myself explaining to general practitioners, and non medical prescribers that I am not a “non specified back pain”, patient I am a spinal injury patient, to prevent them from stopping my prescribed medication, perhaps once or twice a year. I have had clinicians actually google my condition in front of me, when telling me I should try to give birth naturally. (I didn’t do that, thankfully I was able to access a c-section, after that clinician, did indeed google it)! There is a real lack of knowledge about this condition, the dangers of it, how it progresses, how people live with this, and how to manage it in the UK. So UA-cam lectures, while I know it will be such a small and specific audience, in the grand scheme of things, is a move in the right direction for me, 10 years ago I would not have found a single thing on UA-cam! But I enjoyed the lecture, and thank you for uploading it. There are charities in the UK that may even help with input from patients if it is helpful? And if in the fullness of time, one of you discovers a cure for the awful burning sensation across the shoulders, please do reach out to me! Thanks for the upload and apologies for the long post, but the lecture was worthy of a comment

[@Ashli-es8hi]

I was dx with syringomyelia. But not chiari. Also having extreme facial pain and dx with trigeminal neuralgia. Are these related?