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What is the life expectancy of someone with Syringomyelia?

Life expectancy of people with Syringomyelia and recent progresses and researches in Syringomyelia

Syringomyelia life expectancy

Syringomyelia is a rare neurological disorder characterized by the formation of fluid-filled cysts within the spinal cord. The life expectancy of individuals with syringomyelia can vary depending on various factors such as the severity of symptoms, age at diagnosis, and treatment options. While it is difficult to provide an exact life expectancy, early diagnosis and appropriate management can significantly improve outcomes. Timely medical intervention, including surgery or other interventions, can help alleviate symptoms and slow down the progression of the condition. It is crucial for individuals with syringomyelia to work closely with healthcare professionals to develop a personalized treatment plan and receive regular monitoring to ensure the best possible quality of life.


The life expectancy of people with syringomyelia depends on the severity of each case. Life expectancy is generally similar to that of the general population, but in cases where syringomyelia manifests itself severely and surgical intervention is needed, the prognosis can be worse and life expectancy less than that of the general population.
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8 answers
Normal life span

Posted May 30, 2017 by Linda 900
This can vary greatly. Some people can live with that for years and not have any symptoms, myself personally I have lost two friends who had this and were diagnosed with stage four cancer. I myself with the amount of diseases that have been compiled, I may have between 3 to 7 years to live. I have a connective tissue disorder that is the second leading cause of this disease called fibrosis that is going after my pulmonary system and affecting my ability to breathe. And causing then scarring throughout my body.

Posted Mar 22, 2018 by Tammie 4000
I for one am not happy with the poor life expectancy that is given to us. One study says 10 to 13 years after being diagnosed, another says early 60s.

Posted Sep 20, 2018 by Austyn 3500
I have inoperable post Traumatic thoracic Syringomyelia, I am told I have 18 months to live.
This is the very worst type to have, my entire spine is dissembled there for cerebral brain fluid is pouring into my spinal cord and it is already ripped completely in half tethered and has pierced my cerebellum sack.
Typically most people can get a shunt operation and live a normal life. But the majority of people have never experienced true horror like I have. Therefore they whine about saying this to me that feel comfortable. Sunice 3rd vertebrae all the way down my vertebrae space all different directions. My brain fluid comes out of my ears nose and ocular cavities when I cough. I don't even take an aspirin. I'll tell you being interrogated and tortured for 18 months will give you a completely different view on life and pain. I have learned to make a friend of pain horror and moral Terror

Posted Jun 24, 2019 by Jack 2200
I believe it depends on the severity of the syringomyelia.
I had my first shunt put in at 27yrs of age in Chicaho in 1992, in the cervical spine. Then after losing a great deal of weight at the age of 40yrs of age in 2005, I started to develop weakness in my legs, so I knew something was wrong, I went to the Mayo clinic in Rochester, MN and they put a shunt in my thoracic spine, it partially clogged right after they put it in, but it still took pressure off of the spinal cord, so I left it alone. It's now 2022, 30 years after my initial shunt surgery and I'm experiencing new symptoms, my left leg is very weak and my leg refuses to straighten out, I just know something is going on in my lumbar spine, I never wanted another surgery, but I may not have a choice. But I'm still fighting this disorder, it started in Chicago in 1992 and now I'm in Minnesota 2022 and still kicking. God bless anyone dealing with a traumatic issue.

Posted May 4, 2022 by WoundedBear64 600
I have post traumatic syringomyelia of my cervical and thoracic spine. I had a sub arachnoid shunt put in 2011 because I went into respiratory failure. The freaking syrinx cut off my CSF flow. I have had major trauma since as well, my back, shoulders and neck are mangled. I just turned 41 last week, and I battle daily with chronic debilitating pain. Mentally and emotionally it's an everyday quest for recovery and rehabilitation, or conquer maybe? I guess I wonder frequently, how long do I really have? I was paralyzed from the waist down after the surgery. I lived in a wheelchair and then made it to a walker. I regained my motor skills but had no sensation in my legs and feet for six years almost. I was classified as incapacitated for a few years; my body was immobile. They originally said something about eventually I would be paralyzed again, or at least back in a chair by my 60's. I was told a lot of things, I have beat several odds, I suppose. I don't have regular monitoring like I should, because I lost my social security, by a technicality. I fell right through the cracks; I don't even have medical coverage anymore. They literally dumped me and left me with a condition like this, with no health coverage. Anyways..I would like to hear about some cases that have overcome and conquered this horrible illness! I want to still thrive and keep up with my children, and grandchildren. I also want the truth though. What are the odds that I am up against??

Posted Jan 31, 2024 by Venus Celeste 100
Translated from spanish Improve translation
There are more risks in terms of surgeries, accidents , psychological problems porndepresion

Posted May 16, 2017 by María Angélica González gallon 1800

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HELLO EVERYONE! MY NAME IS BETH NGUYEN RN, CEO OF WORLDWIDE SYRINGOMYELIA & CHIARI TASK FORCE.  I AM 38 YEARS OLD WITH A DIAGNOSIS OF SYRINGOMYELIA, INTRACRANIAL HYPERTENSION, POTS DYSAUTONOMIA, HEART FAILURE, AND PULMONARY HYPERTENSION.  I HAVE A...
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In 2007 I was diagnosed while pregnant with my son. I remember the dr calling and saying I had a rare condition called syringomyelia and I said syringo-what? I remember that phone call like it was yesterday. I was told I needed surgery ASAP but they ...
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I developed a syrinx from t1 - t8. Loss of temperature feeling in left arm, shooting pains down left arm. Had a shunt placed, post surgery had sensory loss down left side and in my right leg. The shunt failed and the syrinx was growing fast again. We...
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I was in a car accident on july 10th 1999 and was ejected through the windshield. It wasn't until 2006 that I became symptomatic and was disabled permanently in 2008. I have syrinx in thorasic and cervical and have had a drain placed in the cervical ...

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