Overwhelmed by my Dr. not listening

[AmyWilkins]

Hello Everyone, I am new here. I just turned 25 and have been diagnosed with Chiari Malformation and Syringomyelia since 2017 when I was diagnosed. From a preteen I always experienced debilitating migraines and unbearable pain in between my shoulder blade area. My mother always told me I was making it up so I lived with it. After I had my son in 2015 my symptoms steadily got worse. I spend countless nights in the ER over the next two years. In mid 2017 It had progressed to the point I could no longer grasp anything, I had to use a walker when I could get out of bed. I could not leave the house without assistance because of sudden onsets of weakness I would just collapse. I was slurring my words and could not hold a coherent conversation. I had to give up custody of my son to his grandmother because I could not take care of myself let alone a child under 2. I was eventually diagnosed with the Chiari and syringomyelia and had decompression surgery. After the initial pain of the surgery I was getting my life back, I could work, I went to school and got a degree in automotive technology because that was my passion. Within a year and a half of decompression I had finished my degree and was working in a automotive shop, and started noticing issues. My legs would grow weak, I could not hold my arms up for more than a minute. I eventually lost my job because i physically could not complete a day of work and if I did I would be bed ridden for the next 4 days. About two months ago my tremors came back, I am loosing my ability to grip things again, i cant hold my hands up for more than 10 seconds without being in excruciating pain, my husband has to help wash and comb my hair, I am slurring my words againexhau. I went for a MRI and the 2 syrinx in my spine have grown, now running the complete length of my upper spine and another the entire length of my lower spine. They did a Mri to check the flow (I had 0% flow of CSF before my surgery) and they said that i have flow so they wont do anything, when I honestly believe it alters day by day. I know this sounds crazy but I can hear when the flow starts moving again and it makes me sick to my stomach. Its like the sound of rice crispies when you put them in milk and  I feel the pressure in my head change. The numbness is back and I cant get rid of it anymore, no medicines are helping. I am at a loss and I can't get help from my doctor. He says it is all in my head, I cant be experiencing these symptoms because I was decompressed and have csf flow. Has anyone else experienced a regression like this? Any advice would me deeply appreciated.

[selmaS]

Hi and welcome to the  Chiari forum.

It is possible to have continued issues after surgery because surgery is not a cure, it is a means to restore CSF flow and slow progression...and you already had a syrinx before your surgery....sometimes they  will shrink and sometimes they continue to grow putting pressure on the spinal cord causing many symptoms like you mentioned.

May I ask, did they rule out ALL related conditions prior to your surgery....and was it a Chiari specialist you have been to?

[AmyWilkins]

Hello,

I'm not sure what they ruled put. I know MS was one they had to rule out due to a family history. It was not a Chiari specialist the only one here is 5 hours away and I've been trying to get to see them for a year.

[selmaS]

Some of the related conditions are Syringomyelia (which you already know you have) tethered cord, Ehlers Danlos Syndrome, retroflexed odontoid, CCI, IIH, POTS.
And some unrelated with similar symptoms like MS....Lupus, Lymes....and a few others...

But the related condition EDS, Ehlers-Danlos is one that is helpful to know prior because those with it tend to reject foreign matter....like a dura patch made of anything but our own tissues....Do you know if you had your dura opened and what type patch was used?