Chiari Online Support Group

40 yrs of slow progression and 2 yrs of hell


#1

Hello all. I am 42 and just diagnosed with chiari 2 weeks ago. Since I was a little girl I was referred to as the hypochondriac in the family. Always dealing with headache, bellyache or what my parents referred to as “growing pains” in my arms and legs. Thru school and my 20’s I was diagnosed with IBS and hypoglycemia and suffered from chronic headaches and horrific PMS as well as a rather low BP. In my 30s I began having severe vertigo “attacks” and numbness in my limbs. In 2013 I was walking a nature path when I became severely dizzy but suddenly I couldn’t feel my feet touching the ground. I knew they were… I was still upright. I made the half mile back to my house telling myself right left right left… I received an MRI but the Dr didnt see the chiari. I underwent a vertigo study. I was diagnosed with migraines. I thought migraines were excruciating pain… I had regular headaches. 2 years ago I developed what my previous dr said was migraines with aura. Every 7 to 10 days I wished I would die. Vomiting with a migraine is worse than childbirth without pain medications. I know. I found out I’m allergic to acetaminophen and the imitrex family of meds. My vision started getting worse by the month. I began having a constant blind spot in my vision. Thinking I was dealing with my normal stomach issue I began taking OTC acid medication. After 6 mths of those I started dealing with severe nausea and vomiting. I lost 32 lbs in 5 weeks after collapsing twice at home I was taken to the ER and spent 5 days in the hospital ending with my appendix being removed but was told I needed to keep seeing my dr because the surgeon did not think my symptoms were related to the appendix. I had my mammogram show swollen lymph nodes 2 weeks prior to collapsing and the surgeon prepared me for the possibility of having colon cancer after doing my exam and going over my symptoms. I was malnourished and the second time I collapsed I had the same feeling of not “feeling” my feet touch the ground but this time my legs didnt keep me up. After I came home I developed excruciating pain that almost seemed to follow my lymphatic system perfectly. This past summer I developed orthostatic hypotension with even slight positional changes. It would hit me for a week or two then practically go away. My latest issue was upon looking up at an object or whatever I’d bring my head back to center but I’d hear a “crack” feel warmth in my neck accompanied by neck and head pain and my vision had spots for up to 30 mins after. That prompted the MRI that got my diagnosis of chiari malformation. I am now awaiting I believe the cisternography… it’s in January and I’m not going to lie the lumbar puncture has my nervous. Is this something I should be concerned about? Long post I apologize but greatly appreciate all feedback


#2

Ah I almost forgot… I found my current internist this spring… before finding the chiari he diagnosed me with abdominal migraines and regular migraines with aura as well as neuropathic pain. He prescribed amitriptyline for the pain. It has kept the pain from a 7-8 daily to a 2-3 so I thank him for that every time I see him


#3

Hi, we are of similar age and a lot of your symptoms are similar to mine although I was diagnosed 11 years ago. I have never had a cisternography so I honestly don’t know much about it. Not sure I would fancy having a lumbar puncture though. Maybe your doctor is just being really thorough.


#4

Hello I can relate …I am 49 years old now but I found out I had CM 1 at 45. I found out after becoming suddenly very I’ll feeling like I was having a stroke. I had a 16mm herniation and also a Syrinx in my spin. I had decompression surgery May of 2014 and another surgery Dec. 2014 to repair a psuedomenigle leak.
I have had a Cisternogram to look for a cerebral leak with a large needle to my
neck to inject the dye. It was not easy but I found breathing though it and
Focusing as you do not want jump or move during those procedures. Hope this helps feel free to ask me any other questions. Wishing you the best.


#5

Hey Veronica,
‘Long post’ you say, but its been a long journey to get to this point. And please DO NOT be apologizing, we know about this journey.
I too was labelled a hypochondriac as a child and told “It’s all in your head, we can’t find anything…” that was until they did find something and guess what, they were right, it was all in my head. But they were talking psychological and not physical. I was so very angry, they had been told for years, decades even, that something was wrong but it wasn’t until I had a major episode that further, more thorough investigation was undertaken and by this time, in my mid 20’s, it had developed into an emergency situation.
I had been given all sorts of diagnosis, everything from mental health issues to neuropathic pain, from trigeminal neuralgia to migraine, from optical issues to audio issues. Then had all sorts of treatments from pharmaceutical to acupuncture to botox to treat it all, but none of it worked.
So please believe me when I say “We know” we have been there too, you are not alone.

I have had the ‘joy’ (JOKE) of a few neurosurgeries and now have a VP shunt inserted in my brain to manage the build up of fluid. In having the shunt the process of the cisternogram has been a little easier as they now have a point it which they can inject the tracer fluid, but the psychological process still is not fun. Anybody that tells you this is an easy process has never been here and we know that fact from experience, not a textbook. Please do keep us informed and if we can assist in any way, please ask.

Merl from the Moderator Support Team.


#6

Thank you for the responses. I got in with the neurosurgeon finally… he canceled the cisternography the neurologist ordered and I go in tomorrow for a CINE MRI then next week for a consult. He thinks decompression surgery would help with the pressure and headaches but wouldn’t say absolutely until this MRI tomorrow. I pray I have the surgery and get even partial relief from the long list of symptoms


#7

I want to add a line of caution and please do not take this flippantly, not at all.

You say you ‘pray for surgery’ and I completely understand why BUT I wish to warn you that neurosurgery itself can throw up a whole other set of symptoms. Yes, it may well assist you in managing some of your present symptoms but the recovery can be long and hard.
Please believe me when I say I hope it is the miracle you are hunting for, but there is no such thing as simple neurosurgery. Be kind to yourself on the other side of surgery and take the time your body needs to fully heal, however long that is. I say this because I didn’t take the time, did myself more harm than good and now have some permanent symptoms. So… …Ahhh don’t do that. Be kind to yourself and best of luck.

Merl from the Moderator Support Team