Chiari Online Support Group

Just diagnosed 2 days ago

So I’m obviously new here. I have joined a few fb groups but needed somewhere else to be for when I close out my fb. So about me… I’m mom to 3 kiddos with autism, a wife to a CRPS warrior husband and a chicken, goat and dog mom too. As I read through some of these threads, I’m like HOLY CRAP I HAVE HAD ALL THESE SYMPTOMS FOR A LONG WHILE!!! Headaches that seem like my head will just explode at any minute, Chest pain I thought might have been phantom gallbladder pain (I had my gall bladder removed some years ago) vertigo for about 10 years that would come and go, and even would wake me in the night. Neck pain into my shoulders for years. And the list goes on. But the last 3 weeks have been hell. I thought it was a non epileptic seizures. I went to the ER they ran all the normal labs and such. And sent me home telling me to reduce my stress… uhhhhh yeah. Anyways they diagnosed it as dystonia. These episodes haven’t stopped. They have come on at least once a day. My speech has been effected terribly. Stuttering and slurring really bad. My MRI was just done this past monday, a ct scan was done 2 nights ago at the ER when I went in for my voice. They transferred me from 1 hospital to the other for me to see the emergency neurosurgeon. I had to read the radiologist report to find out that I have Chiari 1 with a 5mm tonsil… so googling all the info I can, this is really scary. It was recommended for me to get the conquer chiari book… it will be here on the 9th. I’m only 33. And it seems like my poor self has just been falling apart the last few years. Does anyone else have dystonia???

Hey Plottwist,
Welcome to Ben’s friends. My names Merl, I’m one of the ModSupport team for our network. I too have a neurological condition, it is not directly Chiari related, although many of the symptoms are very similar.

I have had many years of misdiagnosis, 90% of which were psychological in nature because they really had no idea what was going on and cervical dystonia being one of the diagnosis. I was trialled on a whole range of medications and it was as if I was in a constant fog. Being that I’d been given a psych diagnosis, no matter what the symptom, it was all labelled as psych. Then I’m driving down the road one day and the lights went out, I couldn’t see. This was the trigger that got the medicos investigating further. They sent me for scans then they came out with the line ‘Ohh look what we found…’ like it was all something new. I’d been telling them for many years there was an issue only to be discredited each time. When they couldn’t give a diagnosis it seems it was easier to say ‘He crazy in da coconut’ than to admit they had no idea. Even after obtaining a defined diagnosis and undergoing numerous neurosurgeries the medicos still gave me even more diagnosis from nerve pain to chronic migraines because ‘We operated, We fixed’ but this is all far from fixed.

So now, I have a VP shunt (x2) to remove the CSF from within my skull. I’ve had a craniotomy to reduce (not remove) the blockage with all of the associated ‘Fun and Games’ (NOT) this has involved. For me, now it’s become a case of symptom management and that has been really difficult to manage with symptoms fluctuating MASSIVELY from one day to the next. My surgical journey started back in '96 and has been ongoing ever since.
Just know you are not alone on this journey and that we are here if you ever feel the need to chat.

Merl from the Moderator Support Team

Howdy, welcome. First, let me say that I am truly sorry you are going through all of this. Since you were just recently diagnosed (by reading your radiologist report…which is ironically how I found out initially as well), you may not know yet, but Chiari is almost always something you are born with. Sometimes the symptoms do not show up until later, but it has always been there. I was diagnosed at 39, but after diagnosis I started doing research and realized that I had actually had symptoms from the time I was about 2.

As for the Conquer Chiari book…if it is the “Conquer Chiari: A Patients Guide to the Chiari Malformation”, I can honestly say that the book is amazing. I happened to just come across it on Amazon and bought it right after I was diagnosed, and it was the best thing I ever did. Since then, I have probably bought, and given away, 30 or 40 copies of the book. It is just such a great book.

I also have dystonia, although it has mostly just affected my hands. Mine actually started after I had decompression surgery 5 years ago. It is better now, but I still have issues with it. I even had to replace a cell phone because of a cracked screen because of it.

Good luck on your journey, don’t be afraid to ask for help or ask questions. I will say be somewhat mindful of the groups on FB. There are some that are absolutely great and some that remind me of middle school or high school all over again. lol. I really do believe they mean well, they just do not come across as very understanding or polite. Some of them are very blunt and come across as rude. Take it all with a grain of salt. Realize that everyone’s journey is a bit different. What causes issues with you, may not for another and vice-versa. Good luck.

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Well, let me begin by saying that I’m sorry to hear that you suffer from this issue.

I was diagnosed in 2013 with Chiari type II, 11mm elongated. All I can do here is share my experience with you, in the hopes that it will at least help you make an informed decision.

It was discovered when I had a fit of vertigo while I was at work (at a beer warehouse, riding a pallet jack) and crashed through a pallet of Heineken. They called me in the day after to do another ser of MRI’s and said it was probably nothing. They discovered the issue, told me it would be fine, just a routine surgery and I’d be back out and on my feet in a few days.

I went in August 1st 2013 for the first surgery. I was in the hospital for 2 days, and sent home. 3 days home and the dura patch they used to put my brain covering back together burst, and I went back on August 7th 2013 for a second emergency surgery. I was in the hospital for 4 days, discharged and sent home. 1 day after arriving home, the patch let go a second time and I had to be rushed back to the hospital. They discovered that I had gotten a Staph infection in my brain from some equipment at the hospital (it’s a hospital, there’s bacteria everywhere) and it has eaten through the patch. I went in for the 3rd and final (for better or worse) surgery on August 14th 2013. They botched the third surgery but managed to get an old fashioned cow heart leather patch to hold. I was clinically dead for 4 days, and spent the next 30 days in the ICU with a spinal fluid drain/filter in my back. I spent the next 3 months tethered to an IV pole at home as I needed IV vancomycin every 8 hours for 3 months.

I still have all the headaches. More often now and usually more severe. I also have deficits and light brain damage from the failed surgeries, and can no longer lift things above chest level without causing an immediate Orbital migraine. No vertigo though!

Please bear in mind, this is not intended to scare you, simply to let you know that not every sirgery is a success, and that you need to be very selective about which surgeon works on you. If you are not comfortable or confident in them, they’re not the surgeon for you. Educate yourself on the neuro team that will be working on you before you make any decisions, and stay the course with a positive attitude. You will survive it no matter how it goes, as long as you believe it will work.

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Hi, my name is Robbie! I am 56 years old and diagnosed with Chiari 1 with 5mm tonsil also… small world. I had decompression surgery in Dec 2014. Prior to my diagnosis I experienced a myriad of symptoms… dizziness/vertigo, hands shaking , severe migraines, memory loss and did faint at least 3 times. Surgery went well, recovery was difficult and lasted alot longer than I would have liked. Unfortunately, I do still experience pressure and pain at the base of my skull, migraines and have been diagnosed with bilateral occipital neuralgia. I have been seen by a specialist addressing it and decided not to go thru any procedure that involves invasive surgery.

Bottom line, everyone is different and experiences different symptoms. I will say that having a positive outlook definitely helps. I meditate and rest when I need to. Sleep is so important as well. Best of luck to you!

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