Living with Syringomyelia

Hi,
I’m a 20 year old female, who received her mri results and I need help.
My mri says that there is evidence of syringomyelia from t3-t6.
Then it says “potential cause of pain is syringomyelia”.
I’m confused on whether or not I actually have it. My doctor didn’t seem too convinced and I’m highly unsure.

I’ve never had any past trauma to my spine, nothing showed up on mri either, and I haven’t been diagnosed with chiari.
There is no indication in my mri of injury or anything like that.

I lifted a box then symptoms started straight away, from what I’ve read syringomyelia occurs over time not straight away.

The pain is in my upper back, but started as chest pain.
Moved to shoulders, however it’s getting better overtime not worse.

I think I’m just really nervous, and need advice or just reassurance.

@agee3003 Hello and welcome to Connect. I'm glad you had an MRI to check things out, and because you are getting better, that is a very good sign. I am a spine surgery patent for cervical cord compression, and I have thoracic outlet syndrome which causes compression on the brachial plexus where the nerves leave my spine to go to my arm. That is a muscular type of compression of the small spaces those nerves travel through, and you described what my symptoms are like. My saying this doesn't mean that you share the same issues with me. Often symptoms of various issues overlap, and it takes a detective to figure out their source or sources.

When something is too heavy, unknowingly, we recruit other muscles to help and often with poor ergonomics. It's common to use your neck muscles to assist in lifting, and those attach to ribs and the shoulder blade. It is the rotation of the shoulder blades that allows the arm to move above the shoulder because the shoulder blade rotates supporting the weight of the arm and they move around suspended by the muscles attached. My physical therapist tells me to set my shoulder blades before lifting something... that is move them backward and together. Why? Because if my shoulders are forward the shoulder blades are rotated and shifted forward around the side of the ribs in back, and they are not in the position of strength to support a heavy weight on lifting. When you use good posture, straight back and make sure not to bend forward on lifting, you put less pressure on the neck and spine. That is why they tell people to hold the box, but lift using your legs if possible.

Also, interpretation of the MR imaging is subject to the opinion of the specialist. A radiologist needs to point out any possible problem to the doctor who ordered the scan so that they may do further testing. He wants to cover his responsibility for finding anything and everything because he is held accountable for errors of omission. The patient is handed a report without knowing how to interpret the results and that is a bit traumatic sometimes. Sometimes reports are wrong, or misdiagnosed or there is something found that has no consequences. It takes the training of the spine specialist to interpret the results, and it seems your doctor doesn't accept that as fact. That is actually good news. The report called it a "potential cause", not an absolute cause of pain.

What you may want to consider is a physical therapy evaluation. That can identify your pattern of how you move and function, as well as retrain your muscles to avoid bad habits and build core strength to protect your spine. If you are still worried, you can get another specialist's opinion. You are correct in that spine problems that are not the immediate result of a recent injury often take time to develop with symptoms that can come and go. In my case, I had a whiplash injury which did cause a spine problem about 20 years down the road, and I was probably in my very early 40's when the whiplash happened. It is good to keep records of these things because sometimes, there is an early sign of something that becomes important much later down the road as a clue to the beginning of what develops over time.

The important piece here to focus on is that you are getting better. Keep that in mind so your brain can let go of the fear. We are programmed to respond to fear as a survival mechanism, and that gets in the way of rational thinking. So, you can now say to your brain, OK, thank you, I heard your message, and things seem to be OK now, so please stop worrying.

Thank you for responding.
I’m just concerned as it says “no evidence of cervical stenosis or chiari to account for the syrinx”.
But then tells me syringomyelia is the “potential cause”
So, now I’m unsure if I have one or not.
The report isn’t specific enough, I’m left with a lot more questions than answers.

I honestly think it was me lifting the box, it wasn’t heavy, but was really wide, and I’m 4’11, so probably wasn’t the best idea.
Symptoms like pain came on straight away, not gradually like they do with syringomyelia.

I need to get another mri, this time with contrast dye in my system.
Hoping the results are more definitive.

Again, thank you heaps for responding to me.

Hello @rob39. I see that you were looking for a discussion on syringomyelia, so you will notice I have moved your post into an existing discussion, which you can find here:
- Living with Syringomyelia: https://connect.mayoclinic.org/discussion/living-with-syringomyelia/

I see that @jenniferhunter has joined you and directed you to the same post.

Members such as @cydsings and @agee3003 may also have some things to share based on their experiences as well. How long have you had this?

Hi guys,
Another question, what makes syringomyelia worse?
Or what activities trigger it?

I’m not having muscle weakness, just pain, and it’s very isolated, only in one spot when I touch my upper back.
Is that a symptom?

@agee3003 was a MRI of your head also done to rule out a Chiari Malformation? The doctor you saw were they a neurologist? Did they go over your MRI report and explain the findings? Did they suggest seeing a neurologist? Did your doctor send a referral to the neurologist or was it left up to you? Has the neurologist copies of you MRI images and report? Once you see the neurologist they should be able to give you a proper diagnosis of what is causing your issues.

I have attached a link from the Mayo Clinic website about Syringomyelia and Chiari Malformation. You may find this helpful.

Do you have any numbness or tingling in any of your extremities? Do you have the sensation of a cape feeling in your upper back when someone touches your upper back.

I agree with @jenniferhunter and get a PT evaluation as maybe it is your posture.

I would also recommend starting a journal to note what you do each and everyday, how you are feeling after anything that you did physically. You may find this helpful as you wait for your appointment with the neurologist.

I have been journaling since I had surgery for both Chiari Malformation and Syringomyelia. Both were so severe I needed brain decompression surgery. Journaling has helped me in finding areas where I need to adjust to prevent my body from hurting.

I see my neurologist annually for monitoring and my journal is helpful in remembering things that I need to ask about and any questions I may need to ask that I think of between annual appointments.

Just to let you know that before diagnosis and all thru my journey and as of right now, I am still working full time in data entry. I plan to continue until it is time to retire.

It will be 8 years in August and September that I was diagnosed and had surgery. I continue to live my life as I always did with a few adjustments.

Keep us informed as you move along on your journey for a diagnosis. I will tell you it will not be easy, but you cannot give up. Just take one step at a time and not look further down the road then the step right in front of you.

Thank you for responding.

I am yet to see a neurologist as the earliest I can book is August, everywhere is closed at the moment because of Easter unfortunately.

No tingling or numbness in my extremities, and my back has never had a cape feeling, it’s purely just muscle pain is what it feels like.
My upper arms hurt but it’s when I wake up as I tend to sleep in weird positions. Mainly on my arms.
Once I put ice gel on though when it’s on my shoulders the arm pain stops straight away, so it’s like radiation pain from my shoulders and neck.

My hands burn, but only ever after washing my hands.
I use too much soap, and have had a past of contact dermatitis before, so it could always be that playing up on me again.

It could be my posture.
I work a physical job, lifting boxes, and I don’t lift properly.
I tend to only lift with my back not my legs, no matter how heavy the box is.

It’s fine sometimes, some days I have no muscle pain, then some days I do, all I know is that it isn’t as bad as it was a couple weeks ago since actually doing my physio exercises.

I’ll definitely start writing down what I do in my day and when it worsens.

Putting on ice gel and deep heat tends to really help as soon as it hits my skin which is good.

Thank you, again.

I forgot to mention that I also did chiro for about a month, when the pain initially started, the pain got a lot better from it.

Stopped it now due to money reasons, but could chiro have caused this?

Sorry for all the questions,
If it were syringomyelia, would physio be helping as much as it is.

My pain has gone down significantly.
When I first hurt my back, I couldn’t even sit or walk without pain, and now I’m able to.

I’m supposed to get another mri, however can’t afford it at the moment.

I’m going to ask for a CT scan as I’ve read that the same thing can show up