Chiari Online Support Group

Symptoms appeared suddenly and progressed fast!

I went to sleep one night started feeling slight tingling on my left shoulder blade the next day the tingling was bouncing around all over, and by the day after that I began experiencing numbness throughout my body that would come and go. I am a 25 year old male. My mother died of multiple sclerosis last year and my symptoms matched MS fearing I had that I went to the ER and was given an MRI of my brain and cervical spine which revealed I had no MS lesions in my brain. However in my cervical spine I have a massive Syrinx that the neurologist said was the biggest she’s ever seen which went down to the bottom of the scan which ended in the upper thorasic region. I can’t have an MRI done of any more of my spine because I have metal rods that corrected scoliosis when I was younger, so I’m afraid that the Syrinx probably extends further down and it takes up almost my whole spinal canal! Currently it’s been a week since my symptoms started and I’m still able to walk although I have bad numbness that’s all over from face to my arms and legs and my feet. I’m scared it’s going to get worse and I’ll be paralyzed or something. I see a neurologist in two weeks, but I’m afraid I can’t wait that long… also I do have a Chari Malformation 1 I’m not sure if that’s the cause of my Syrinx or not but I figured I should mention it since that’s what this group is about. Anyway any advice stories or anything really would help sometimes I feel like I’m about to die and I’m scared thanks for taking the time to read this.

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You are describing neuropathic pain, classic for a syrinx.

Chiari is a common cause for syrinx.

In general, Chiari + syrinx = surgery.

With the symptoms you are describing, you need to get to see a neurosurgeon in a timely fashion. Call and speak with the neurologist. Ask them if they think you should see a neurosurgeon instead of a neurologist and change the referral.

Hope these thoughts are of some assistance.

Just curious on your thoughts is two weeks too long of a wait for this cause I’m having difficulty finding a neurosurgeon who can see me immediately. Any ideas?

Also I’ve read these surgeries don’t work all the time or cause people more problems do you have any knowledge of the outcomes of these surgeries?

2 weeks is actually really fast to get into a neurologist.

The point I was trying to make was that what you describe doesn’t need neurology. You should see neurosurgery. If you have the neurologist look at your images(rather than just the scheduler look at the reason for referral), you may save yourself some running around.

Certainly, you don’t want surgery if there is an alternative. However, the only way to affect anatomy is surgery.

I often discuss the Chiari Severity Index with patients. Here is a figure from the 2015 article. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4332988/figure/F1

The importance here is that myelopathy(evidence of spinal cord dysfunction) is a concerning finding. Surgical success drops from 81%(head-aches only) to 58% if you have myelopathy. There is concern that, once there is evidence of spinal cord dysfunction, surgical success is lower because there may already be some permanent damage that can’t be reversed.

I see thank you for that it’s very interesting. I’m just scared I had no myelopathy symptoms a week ago. Is it normal to progress that quickly? I’m scared I’m going to end up with permanent paralysis within two weeks. I know I’m reading too much about this on the internet and need to calm down but it’s scary. Thank you for getting in touch though and sending that info. I know I need a Neurosurgeon I have an appointment with one on Sept. 11th

If you know any good neurosurgeons in the Chicago area let me know also thank you

I HIGHLY recommend finding a Chiari specialist. It really does make a big difference. I also have a very large Syrnix. I had surgery done by a locally well known and highly recommended surgeon. Three months after surgery I was told nothing had changed but at least the symptoms were not worst. A few months later I sought out the Chairi Clinic in Cincinnati (2 hours away). The first surgery was in May. I repeated the same surgery in December of the same year with very different results. My syrnix is now shrinking. The syrnix can cause nerve damage and once the damage is done it can’t be repaired. Seek out a specialist. It is worth the time, money, and hassle.

I don’t have advice but want to say I feel what you’re feeling. Not alone. I don’t have syrinx that I know of but had chest pain and burst of headache with full spinal pain. It only lasted a minute or 3 but it scared the crap out of me. Not trying to go into that just saying the sh!+ hits the fan and often we are feeling alone when it does. However, even if we are pioneers (in a sense) of some of these symptoms sharing about it here if you’re able can save and encourage another to face this. I’m rambling I think so I’ll just say I hope to hear of your journey and to join you on the path.

Thanks for your response I appreciate it. Besides looking for advice I mainly posted here because I saw there was a actual site dedicated to this thing and I figured it’d be nice to get opinions from people that actually have it. I’m sure you understand since it’s hard for someone who doesn’t have it to truly understand how scary it is. The Syrinx I have is causing me numbness all over sometimes it’s worse I have weakness in my arms and legs, but thankfully no paralysis yet hopefully I can get a neurosurgeon who can solve it before it progresses that far. Anyway as far as the Chiari goes I have headaches occasionally usually behind one of my eyes that feels like pressure ache. Also in one eye I have double vision almost all the time. It’s like I see a ghost image above the real one that overlaps a little bit. As of right now the vision issue is probably more annoying than the numbness. I’m wondering if that’s something Chari related I read that it can cause double vision but I’m not 100% sure. Anyway sorry for the long message but I will try to keep posting. Like you said maybe someone who’s scared might read this and atleast know they aren’t alone.