I'm just curious - I feel like I'm still on a learning curve even though I've known about the Chiari a year and a half and have had decompression over a year ago. Why are their continuing symptoms after successful decompression? I can understand some permanent nerve damage but why is it some people still have headaches and etc?
I personally have never had headaches, but I think I have some sort of abnormally high pain tolerance. Mine herniation was 20 mm and I had pretty decent blockage. But I still have severe vision issues (which were what prompted the initial MRI that found my Chiari) and I have facial droopage and odd symptoms like tongue numbness which didn't start until 6 months after decompression. I'm also chronically tired to the point where I feel physically ill most days - this has gotten worse even after the diagnosis.
I did go see a specialist surgeon so I have no worries that it wasn't successful and my CINE showed good flow but the only symptom I had before my surgery that left was I used to get tinging in my forehead. It stopped, but recently my nose started getting the same sort of tingling. Some of my neuro consults think it's all my Chiari but don't have any answers for what the continuing would be after successful decompression.
Csmom, have you been screened for cranio cervical instability? I know some symptoms can be permanent, but I don’t know about aquirring new symptoms. Are you hypermobile? EDS? When was the last time you had a brain and c-spine MRI?
Thank you for the reply Jenn I am hyper mobile (as are my kids) but any consults I’ve asked about it says it doesn’t say much. Last MRI was July & I’ve only has one spine MRI to look for a sphrix (sp?) and luckily I did not. But I about got laughed out of the rheumatologist office when I asked about EDS.
Christi, this is a good talk about EDS and instability.
CSFinfo.org
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Scroll to the video about EDS and cranio cervical instability.
I’ve got some new symptoms too since surgery- incontinence, worsened headache (which is controlled if I wear my cervical collar), dysautonomia, shoulder and arm pain and numbness. I think my issue is CCI, so I found a surgeon who is a Chiari and CCI specialist. I’ll see him in a month. He uses flexion extension Mris and rotational ct scan to diagnose it.
I think you should look into dysautonomia too, it can make you very tired and make you feel ill. Cervical stenosis and disk disease of the neck can cause neurologic symptoms too. I had a c-spine MRI a year ago with no pathology, then a new one done recently and it shows several torn and dehydrated disks and stenosis so a lot can change very quickly, especially if we have EDS. I’m sorry you are feeling so bad after surgery- this stinks! And sorry your rheumy was so dismissive!
Hang in there, I think that as long as we continue to research and find the right doctors that we will find answers.
Thank you for the extra info, Jenn - I appreciate it. = ) I have wondered about dyautonomia for myself, my blood pressure drops upon standing and some other symptoms. I did suggest a tilt test at one point and the neurologist was going to schedule one and I never heard from him again. I figured it wasn't really worth pursuing, feel like a bit of a conspiracy theorist with my health. Darn google. = )
I too had decompression 15 months ago,now I have developed dysautonomia it has been a real hard thing to deal with,but the surgery is still to my opinion is a success.It’s not unusual to develop certain conditions connected to chiari.It might be worth while to get the tilt table test.I have just started a beta blocker in hopes that will help, not sure yet what will happen,just hope it will work.Hope you soon find answers but there no cure for chiari.
I am hyper mobile (as are my kids) but any consults I’ve asked about it says it doesn’t say much. Last MRI was July & I’ve only has one spine MRI to look for a sphrix (sp?) and luckily I did not. But I about got laughed out of the rheumatologist office when I asked about EDS.