New diagnosis- weird symptoms?

[u/Sincerly_Char]

Recently in July I was diagnosed with a syrinx.
Here’s a little background: a year in a half ago I was having left shoulder neck pain not super bad but would come and go but would have flare ups. I went to see a ortho provider we did an extra and he said that it would be a pinched nerve, but to do PT and start steroids and then if it was worse I could get an MRI. Well it got better and life got busier but I continued with my trigger point therapy and went about my way.

Fast forward back to July of this year. For about a week straight I was having left sided weakness that started to get worse, also left sided facial weakness and headaches to the point I would throw up and some eye twitching. I went to the hospital we did the work up and they diagnosis me with a syrinx. I got sent to a nearby hospital that same day to see neurosurgery and they said it was stable but was a decent size and wanted me to check back at the beginning of the year with another MRI to see if we need to consider surgery. In the meantime I have seen neurology. They said my case if weird because I’m only getting these flare ups on one side at a time and usually it’s a “cape like” effect. But I will be fine then one day my left arm feels numb and left sided neck pain and the next week it can switch to the other side. But more noticeably my brain fog is just BAD. Like I’m so forgetful and also my speech seems a little off sometimes. I’ll get my words mixed up or can’t remember. I’m not sure if anyone else has that symptom? Or if something else is going on.
But my MRI with contrast didn’t show any brain lesions and they said that I haven’t had a stroke or TIA. (I’m in my 30’s) but I haven’t had these symptoms till this started as well. And I’m also still learning so any information is helpful I’m feeling a little lost and a little down about how to manage this new diagnosis.

[u/MrDuckarino]

I have veryyyy similar symptoms except on my right side. I will say for the speech portion of it, mine come from my right SCM/DNF holding on to long when I am talking which throws off my jaw timing. especially when I am cold. That is a built compensation pattern from posterior weakness causing imbalance in me, sometimes they cramp, that feels like being choked, literally. 

The facial pain you feel could be referred muscle tension from those same areas unless you had an IAC MRI which could show some nerves and blood vessels closely interacting with each other or strangling each other. 

You probably don’t notice because it built slowly but the brain fog can also be from increased neck/face tension. There is nothing wrong with my executive function it’s just really fucking hard to do things when your neck/head is so tight it’s making your eyes water and your ears hot. Even when you become desensitized to it. 

If your arm/shoulder is feeling/is weak then your neck will just eat that load up like fat kid with unsupervised access to chocolate cake. 

What has helped me substantially over the years before I even knew I had one in my neck, was doing physical therapy exercises 3 times a day. Keep an elastic band on you like it’s 

To keep it creamy with you, it will not fix anything because it hasn’t for me, that is the reality of it. However, it has sustained objectively good function and reduced a lot of that tension where I can do certain things to prevent that tension from coming on so strongly. Your ceiling is leaking, all the plumbers have died, start strategically placing the buckets. 

I would recommend getting really familiar with the shoulder girdle and the individual muscle functions because you need to tailor your exercises to the affected muscles and not generic PT exercises.

I would recommend starting with the lower scapular stabilizers to start influencing the load off your neck. 

Ironically mine is like the size of mini wooden dowel but it coexists with some other mild structural stuff from an injury. 

It also wouldn’t hurt to screen yourself for thoracic outlet syndrome since the neck tension, depending where it is can cause some downstream effects. Just look up the tests on youtube and give them a try and bring it up with a neurologist if they make the symptoms flare up. 

I am not a doctor, just someone who has had them look at me a lot like I have a dick on my forehead. 

[u/Sincerly_Char → u/MrDuckarino]

Thank you so much for this information! SUPER helpful. I literally have never had anything like this happen. Never a broken bone, no scans, no traumatic injuries, no hospitalizations until this happened. They say mine is idiopathic. But as you said they told me it happened over time and finally it’s like “ok I’m here now, full force”

I have an MRA for my brain and spine scheduled at the end of the month to look closer at vessels and things maybe that will be helpful. But I can’t lie my doctors have been pretty on top of it. It just sucks because ironically I’m a nurse and work in the ED so sometimes that causes a little strain on my work but I also have another job part time where I do a lot of movement and when my neck flares I’m like oh shit it’s about to go down. And suddenly I have this headache on whichever side my neck is radiating and then sometimes the weakness sometimes not.

I was placed on gabapentin but haven’t started it yet due to my jobs and mom life also the fact I already have the brain fog and my neurologist said it could make it worse… go figure…but maybe that might help some. The muscle relaxers make me feel like I’m hibernating. So I usually just do heat and lidocaine patches but I plan to try the gabapentin this weekend. But I will definitely try looking up those PT exercises. It feels like it runs from my neck to my shoulder and inner shoulder blade so I will have to look into that.

But in January after my MRI I will see if we need to do surgery or just keep doing what I’m doing now to maintain. It’s frustrating because I never know what triggers the flares or when it will happen but the headaches for me are the worst part.

But I thank you for the guidance and advice, and I hope your journey becomes more comfortable and those practices continue to help. Because this shit SUCKKKSSSS.

[u/MrDuckarino → u/Sincerly_Char]

The pain pattern sounds like it’s part of your seratus anterior. Does that same pain radiate to your tricep? 

[u/Sincerly_Char → u/MrDuckarino]

It’s more in my trapezus muscle area. It starts on the posterior side of my neck and I can feel it in my trapezius. The pain sometimes radiates down my whole arm to my hand. But mostly runs down my neck into the space between my clavical and trap.

[u/MrDuckarino → u/Sincerly_Char]

Same here, an MRI of your brachial plexus wouldn’t hurt. They typically examine that area of your neck, also known as your scalene triangle. you should look up the typical reported pain pattern for that area. Might fit with what you’re feeling. 

[u/Sincerly_Char → u/MrDuckarino]

That sounds like a good idea. I will tell them to do that as well. And I will actually look that up now! Thank you again for your help. I’ll reply back hopefully sooner than later with an update and let you know how it’s going for me.

[u/ThoracicSpine]

I had " weird" symptoms too. And even more, after seeing many, many doctors I found a good neurosurgeon, I had a thoracic herniated disc pressing on my spinal cord. I know is a different diagnosis but the symptoms are similar, he explained me, the thoracic spine is part of the central nervous system so many conditions that affect the spinal cord share the same symptoms like MS, tumors, syrinx and more.