Living with Syringomyelia

Posted by nancy82415 @nancy82415, Nov 2, 2019

I have been a member of Connect for a couple of years. I am hoping to connect with others that are living with Syringomyelia. Hoping to share experiences. I was diagnosed with both Chiari Malformation and Syringomyelia. I follow the Brain and Nervous System page for Chiari, but would really like to connect with individuals living with Syringomyelia. I haven’t found a discussion on Connect regarding this. So lets start the discussion.........

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Can someone please help me interpret my results?

“Only potential cause for the symptoms identified is syringomyelia from about T3-T7 level.
No evidence of cervical stenosis or chiara malformation to account for the syrinx
Possible causes include past trauma or tumors
For this reason, given the absence of an apparent cause, the patient should come back for a contrast-enhanced study to exclude any underlying lesion in the thoracic spine”

I’m just confused on whether or not they have found a syrinx.
The only way I’d have one is if I have syringomyelia, but that says “potential”
I’m just concerned as it states “account for THE syrinx”
Does “the” imply that I have one but they just can’t say yes until they find the actual cause?

Or is that just said as a just in case?

REPLY
@agee3003

Can someone please help me interpret my results?

“Only potential cause for the symptoms identified is syringomyelia from about T3-T7 level.
No evidence of cervical stenosis or chiara malformation to account for the syrinx
Possible causes include past trauma or tumors
For this reason, given the absence of an apparent cause, the patient should come back for a contrast-enhanced study to exclude any underlying lesion in the thoracic spine”

I’m just confused on whether or not they have found a syrinx.
The only way I’d have one is if I have syringomyelia, but that says “potential”
I’m just concerned as it states “account for THE syrinx”
Does “the” imply that I have one but they just can’t say yes until they find the actual cause?

Or is that just said as a just in case?

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@agee3003 I understand that your MRI results have given you more questions than answers and a second MRI was suggested which is a standard response when a test is inconclusive. From your posts, it seems you have improved a lot and you’ve described lifting heavy boxes with poor ergonomics. That may get you in trouble with your back in the future. You could learn a lot from a physical therapist about this on how not to cause an injury from habits.

Other members here can only share their experiences and what they know from their conditions, but cannot interpret your results. That takes the skill of many years of medical training, and as you know, your providers have not been able to give you definitive results. If another member were to make a diagnosis for you, that post would be removed by the moderators because it is against the community guidelines.

There is a lot to learn from what other members share. Medicine isn’t always straight forward and sometimes conditions are diagnosed by excluding things with similar symptoms. There are also anomalies even though anatomy follows a general pattern. For examples, nerves or arteries could be in different places from what they are in most of the population, etc.

I remember a doctor telling me that I wouldn’t want him to find anything wrong with his testing. He was a cardiologist and I was under a lot of stress and having chest pains. That was good advice and he was right. My dad was a heart patient and I worried about that, and my results showed no issues.

I hope that can help you ease your mind. It sounds like you are recovering from the muscular issues which is very good news.

REPLY
@jenniferhunter

@agee3003 I understand that your MRI results have given you more questions than answers and a second MRI was suggested which is a standard response when a test is inconclusive. From your posts, it seems you have improved a lot and you’ve described lifting heavy boxes with poor ergonomics. That may get you in trouble with your back in the future. You could learn a lot from a physical therapist about this on how not to cause an injury from habits.

Other members here can only share their experiences and what they know from their conditions, but cannot interpret your results. That takes the skill of many years of medical training, and as you know, your providers have not been able to give you definitive results. If another member were to make a diagnosis for you, that post would be removed by the moderators because it is against the community guidelines.

There is a lot to learn from what other members share. Medicine isn’t always straight forward and sometimes conditions are diagnosed by excluding things with similar symptoms. There are also anomalies even though anatomy follows a general pattern. For examples, nerves or arteries could be in different places from what they are in most of the population, etc.

I remember a doctor telling me that I wouldn’t want him to find anything wrong with his testing. He was a cardiologist and I was under a lot of stress and having chest pains. That was good advice and he was right. My dad was a heart patient and I worried about that, and my results showed no issues.

I hope that can help you ease your mind. It sounds like you are recovering from the muscular issues which is very good news.

Jump to this post

Thank you.

I think I’m just stressed and need some reassurance or guidance.
Even though my results are non conclusive, and I am getting better with only physical therapy.

I know no one here can diagnose me, just needed the reassurance that I’m okay.

REPLY

Hey guys,
Good news!
I’ve seen a doctor, one of the best in my area, and they said that the results are inconclusive and if it were that, they would’ve picked it up straight away.

Plus, they checked my back and it’s all muscular related due to work, not lifting boxes correctly, and looking down too much on my phone, so my posture.

They said my symptoms don’t relate to syringomyelia so the radiologist was just trying to find or point out the first thing they thought of.

They said if it doesn’t still improve doing physio, then I need to go back.
But for now, not to worry and just know that it’s a muscle injury or muscle tension due to work and posture.

REPLY

Hey,
Just a question, in my report there was no mention of a syrinx being found.
No dimensions of what or anything like that.
Just says “evidence of syringomyelia”
But could the evidence be referring to the syrinx?

Surely if it was a syrinx they’d be a lot more specific with measurements and dimensions.

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To @Jennifer Hunter
Further to my original post I wish to add my profile. I am 83
Years old and live in Australia.
I have Poly Neuropathy and recently with a syrinx from T4 to T10, spondylosis with central canal stenosis. The neuropathy started in my toes about 15 years ago and progressed to below my knees.
For the last three years i have managed that ok. Since September 2022 it progressed rapidly to the tops of my thighs (prickling pain and itching) the pain in my feet increased to the stage that I consulted a Neurologist. I am now on 600 mg Neurontin a day. This has settled the nerve pain a little but makes me drowsy. Im slowly losing the use of my legs. The Neurologist said that the symptoms were moving too fast to be Neuropathy, so reffered my for a full spinal MRI. There is Spondylosis all down my spine with multiple nerves compressed, and a syrinx in my spinal cord from T4 to T10. I felt the syrinx explained allthe upper body pain that I have had for years that no GP could give me an answer to. The Neurologist referred me to a Surgeon for an opinion on the stenosis in the lumber area and the syrinx. The Surgeon was not interested in discussing either of these problems, he only wanted to talk about the neuropathy. I asked him about the syrinx and he waved his arm around and said " They're nothing I see them all the time" That advice cost $260 for ten minutes. I wish I had read his patient reviews beforehand I am yet to go back to the Neurologist, the Surgeons report will make interesting reading. Regards rob39

REPLY
@agee3003

Hey,
Just a question, in my report there was no mention of a syrinx being found.
No dimensions of what or anything like that.
Just says “evidence of syringomyelia”
But could the evidence be referring to the syrinx?

Surely if it was a syrinx they’d be a lot more specific with measurements and dimensions.

Jump to this post

I’m so sorry for all of the questions.
I’m a major stress head, and am driving myself insane overthinking and having really bad panic attacks.

I’ve never been good at coping and my way of stressing less is by talking to people.

REPLY

Saw a new physiotherapist.
She said not to worry, and if it were what was on my mri that I’d be having symptoms on my lower back as that’s the area of spine affected.

She did say to just keep an eye on symptoms and said this back and neck pain is purely muscle and stress.
She said that she thinks they have picked up something but it’s not what they said.
She said that if it were a cyst legally they have to put down measurements and location, not just state it.
Plus she said they never mention a syrinx.
She said in a year or so to get another scan to make sure I’m genuinely okay.

REPLY

Hey guys,
I’m still highly unsure on if I have syringomyelia or not.

I saw a neurologist, and passed all of my neurology tests, and have all my senses, and he said that the pain I’m currently experiencing isn’t related to the syrinx.

I need to go for another mri but with the neurologist, and I’m petrified to find out conclusively if I have it or not.
He says if I do have it then it genuinely isn’t affecting me.

Can you have a syrinx that never portrays symptoms?
Also, if I do have one but it isn’t doing anything, am I able to get surgery to remove it so it doesn’t start symptoms?

I also got told it can’t grow unless there’s a tumor, is that true?

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Can someone please respond to me I’m really scared

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