Thank you all for being so welcoming! I haven’t been a member long, but words cannot express how much it means to me to be among friends who understand. I was diagnosed in early 2010 with a 15 mm herniation. I live in Montana where we can’t even get cine MRIs so I went to Seattle for it and it showed little to no CSF flow through the area. I had decompression surgery with Dr. Ellenbogen in Seattle in October 2010 and it has been one rocky road for me since. I still have a lot of symptoms, and my biggest problem here is location. Montana’s population is just too small for doctors to have experience treating it. So I sit here writing this because I just don’t know what to do. The past couple weeks I have been researching the numerous Chiari clinics and institutes and I have no idea where to even start trying to seek treatment. I saw my GP last Friday and she said I need to be seen asap by my neurologist. The last time I saw my neurologist (which, admittedly, was in late 2011) she said the symptoms I experience are nothing to worry about and they haven’t really changed since then so I didn't go back to her. I called yesterday to make an appointment and was told that since I haven’t been there in the last two years, I’m considered a new patient. So it will be months before they can see me (but my GP said to call if I have problems and she will help). I also went back to Seattle 3 months and one year after surgery for checkups and both times they said the cine MRIs looked great at my spinal fluid flow was “beautiful.” I can definitely go back but they weren’t too concerned about the symptoms either at that time. But that doesn’t mean they wouldn’t be concerned now. I feel like all I have done in this post is ramble, sorry about that. I will give you all the nice long list of my symptoms and see what you think. I’ve never had a full spine MRI or any testing for any of the related disorders.
Classic occipital Chiari headaches 4-5 times weekly. The pain starts in the back of my head right around the area the bone was removed and radiates over the top of my head behind my eyes.
Migraine headaches 4-5 times weekly, sometimes daily for weeks on end. I usually have occipital HA pain as well, with neck pain, light, and sound sensitivity.
Nausea and vomiting- almost daily. I am almost always nauseated. I don’t vomit every day and sometimes I have streaks where I go weeks at a time without vomiting but it has been almost daily for months now. When I do eat, I feel full after really small portions. I don’t seem to every really get hunger pains since the surgery, I get nauseated instead. So naturally the digestive issues and lack of nutrition cause me to have diarrhea or loose stools almost daily.
Neck pain almost daily. It radiates from the back of my head, down my neck and down my shoulders.
Cracking sound when I roll my neck along with discomfort. It’s also painful to move my head to look down.
Vision problems- nystagmus, dark splotches
Sensitivity to noise and smells
Heightened gag reflex- I don’t touch my neck because the slightest pressure makes me gag
Hearing issues- hearing heartbeat in ears, ringing in ears
Frequent urination- this one really comes and goes. It hasn’t been as bad in recent months but I go through phases where it is really bad and I feel unable to empty my bladder completely. There’s no way it is a urinary tract infection as it has persisted for over four years.
Excessive thirst- I know, probably the source of the frequent urination. But when I say frequent, I’m talking like one morning when I was living with my sister she asked me if I was ok because I had been in the bathroom 17 times in a half an hour. True story. I’m not always thirsty but it seems like my mouth is always dry. There are a ton of autoimmune disorders in my family (mainly rheumatoid arthritis and Sjogren’s) so I always keep that in mind on this one.
Dizziness
Fatigue
Pain in my hands and arms, mainly my left hand, wrist, and arm but occasionally the right side too.
Excessive sweating- It isn’t like the kind of sweating you would get from a good workout, more like clammy sweating.
Easy bruising
Numbness and painful tingling in my hands and feet
Really painful tingling/crawling feeling on my scalp at the site of the duraplasty. NS said it is the skin nerves re-growing.
Insomnia
Problems finding words when speaking
Difficulty concentrating and thinking
Memory problems
Balance problems- I frequently trip over thin air and walk into doorways and sometimes start to almost topple over when standing. I don’t usually fall but just feel really off balance.
Menstrual problems- very irregular and really painful cramping.
I don’t know if hair loss is a symptom but I seem to lose hair like none other.
Emotional instability- I experience irritability and am really sensitive to noise and people in crowded environments. The most embarrassing aspect of it though is the crying spells. I cry all the time for no reason and I don’t even feel upset or emotional when I do. My eyes also feel like they are filled with tears all the time, filled just below the surface and waiting to escape.
I have this list written on a piece of paper and didn’t think it would be this long typed out. Sorry about that! If anyone has any insight or recommendations for a good neurologist, I would love to hear them. I’ve noticed everyone around here is a big fan of Dr. Trumble and after watching his video I would love to see him, but I doubt that any NS will see me until a neurologist does first and I don’t know that I need to be seen by a NS, I just need help.
Thank you all for the insight. I had heard that Dr. E was one of the best so it’s reassuring to know it is true. I will call his office Monday and see if they can recommend a good neurologist in Seattle or somewhere closer to me or if he will see me. My GP gave me some nausea meds and they have really helped me out the past week with the nausea and vomiting. I spent a lot of time last week pouring over everything about dysautonomia and other related disorders that I can get my hands on and I’ve been over a lot of the material on dinet.org and thought that feeling full after small amounts of food sounded like a huge red flag for it. From everything I’ve gathered about it, I have almost every single symptom for it. I will keep looking into it, though, and let you know what I come up with.
Krissy agree about dysautonomia and possible cranio cervical instability (secondary to Ehlers Danlos syndrome- see Brighton Criteria and Beighton Criteria to get an idea of how it is diagnosed) Also on the cranio cervical instability see these videos
CSFinfo.org Scroll to videos Scroll to metropolitan Area Watch anything with CCI and EDS in it
You are not alone with these symptoms, after my drcomoression i developed dysautononia and CCI. Not every NS understands about these tag-along conditions so it is up to us to find the NS who knows...I don't know if Ellenbigen deals with CCI with their Chiari patients. NSs who do (that I now of) are:
Sandhu, MD Henderson, MD Rosner, NC TCI, NY Trumble, fL (not 100% sure if he does CCI - but a great doc) Frim, IL Patel, SC
So sorry you are dealing with this but there are more answered for you out there, just need to get the doc! Hang in there Krissy!
Thanks, Jenn! That list of doctors is a huge help for me. I’ve been looking into all of the recommended videos, as well as anything and everything. Thank you all for your support.
Beeba, from my previous research before I posted this, the dysautonomia really hit home for me. I think I have majority of the symptoms but I think it is going to be challenging to get a doctor to diagnose me. I keep looking into whether or not you can have EDS without the symptoms like stretchy skin, joints that go beyond the normal range of motion, etc. I haven’t found any answers yet but I am still looking. I think I definitely need to be for CCI and Intercranial Hypertension just to rule them out. I’ve always complained since surgery that it’s just hard to hold my head up. I always feel way better when I am laying down (ha, the dysautonomia symptoms just keep piling on). And with the cracking sound and discomfort when I roll my neck, I think it is likely something is unstable back there. I think it might be good for me to go to one of the chiari clinics that offers more comprehensive care and knows about the related disorders and how to treat them. Any recommendations?
Thanks Jenn! Do you know if any of them screen for dysautonomia? Or if they would help me get diagnosed? I’ve been looking into the Chiari Institute and I’ve heard great things about Dr. Trumble.
It looks like I forgot to mention this, but after the surgery after I was released from the hospital, I started leaking spinal fluid out of my incision. I was readmitted and they talked about reopening the incision to make sure the duraplasty had held up, but they never did. They probably told me why they decided not to, but I have no recollection of it now. I vomited nonstop after surgery for weeks on end. It wouldn’t surprise me if it the trauma pulled some stitches loose on the duraplasty. Has anyone ever had problems with the duraplasty holding up? I wonder if it could be contributing.
Gees Krissy you had a really tough go. Did you ever have a follow up mri to make sure the CSF leak sealed back up? I have not experienced this but I know here who have dealt with it…some are left for it close up on its own and some are opened up again and rematched.
I had a cine MRI at Harborview one year after surgery and they said the spinal fluid flow looked great. At the time I knew so little about Chiari so I didn’t think twice about it. But knowing what I know now, it seems kind of strange that they never went back in to check. When I was readmitted to the hospital, it was only 5 days after the surgery so it’s not like it was super healed or anything. They must have had reason to believe the leak was just coming from the incision. But how would they know without an MRI or reopening?
Krissy, if you have a CSF leak that means there is a hole in your dura. Sometimes they resolve on their own, though. Do you have any pockets of fluid in your neck or base of head? If I had a leak I would want follow up imaging to make sure it had resolved.
Hi, my name is Lisa. I don't have internet so I havent been able to be an active member. But today I read your post and it made me cry, I swear we could be twins. I read the replies and now have alot of homework to do. :)
A little background on me is : diagnosed with chiari in 2010. C2 bilateral ganglionectomy in 2012. This year they told me I also have arthritis in my neck and disc degeneration and i recently underwent another ganglionemtomy for C3 nerve and a decompression surgery. And i have all but 2 of your symptoms. I have also lost half of my hair and it is really freaking me out. I am unable to work and have never met anyone with chiari or any of my symptoms.
Thank you, for some reason just knowing you arent alone is a huge relief. I thought i had that 4 years ago when a doctor finally said your not crazy, i know whats wrong with you. My neurosurgeon is great but very busy and I just finally got a neurologist and saw him for the first time. He put me on inderal and it helps with the vertigo and balance problems. But the only thing they have me on for pain is lyrica for the lightning bolt type nerve pain i get intermittenly throughout the day and Imitrex for the migraines, which helps about 15% of the time. But they only give you 9 a month.
Welcome, Lisa! When I first found this forum a few weeks ago, I started doing searches with keywords that indicate problems after surgery. I looked into headaches, GI issues, etc. and I found so many people who seem to have similar problems. I know exactly how much relief you feel when you realize you aren't alone. I'm so glad you found us! If you ever need someone to talk about all you have been through, just know I am around. Jenn, the leak must have resolved itself because I remember everything looking good on my last MRI. Unless I did more damage, but if I did, it would have occurred more than a year after my operation. It seems like it would have been healed enough by then to avoid that. And Beeba, I was driving yesterday from a town 90 miles from my home and I was having all the usual neck problems. About half way through the drive, I just burst out laughing. I thought of what you said about how you didn't know how to describe CCI symptoms other than you are just a bobble head. Turns out, I am a bobble head. I don't know why I thought it was so funny, but I think I have just never realized it before. But yeah, based on the amount of neck pain I have daily, I think it is a possibility I have CCI.