25 year old woman newly diagnosed and scared

Welcome Greetings and Introductions
1

Hi All, my name is Kristen I’m from NJ and 25 years old. I was diagnosed with Type 1 Chiari Malformation in the end of May. I am still very new to all of this and my symptoms are rapidly getting worse.

I had a spinal tap to rule out intracranial hypertension and now my back pain and head pressure are AWFUL. I feel like I have no relief. No syrinx is present and I also have 2 herniated disks, one at c5 and one at c6

There is a constant burning sensation in my head, neck, shoulders and down my left arm. I also have muscle weakness and pins/needles, severe dizzy spells.

Right now my major focus is the pressure in my head. I am trying to find relief for the feeling that my head is going to explode. Can anyone provide suggestions?

Also, do people recommend surgery? I am scheduling a consult with a Chiari neurosurgery specialist in NYC as soon as possible.

Hope to find some support and advice here!

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Hi Kristen Elizabeth, I’m Kelly welcome to the chiari support group!

It could be possible that if you are feeling worse after having the spinal tap you may have a spinal fluid leak. It can cause horrible pain when you stand up or sit up. That happened to me , so I had to go back to the hospital to have a blood patch. I have also heard that having a spinal tap could possibly cause chiari symptoms to get worse, but I’m not 100% sure if that is a proven fact. As for decompression surgery, it is different for each person. I had decompression surgery and I got very little relief from my symptoms, but others have done very well and got their life back. It’s very individual for each person. I wish you luck!

Kelly :slight_smile: