Hello! Thank you for adding me to this group. I have had Ehlers Danlos Syndrome my entire life but had not been diagnosed until age 61. Within the last six years, I have severe headaches when I get up from a chair and relief when I lay down. One of the neurologists I have seen did scans and found that I have dural ectasia in several places in the spine and in the cervical medullary area with pouches of csf fluid. I have had constant pulsations (in sync to my heartbeat) in my head for years mainly I notice behind my left eye. The doctors do not have a clue…I was even sent to Johns Hopkins, no clue. Several months ago I experienced a very strange visual distortion when I put my head back on my couch. The windows in my living started to move and got bigger and smaller (I do not drink or take psychotic meds). Neuro told me it was “Alice in Wonderland Syndrome.”??? Putting this all together in my non medical way, I am wondering if I have a csf blockage which is causing the pulsations in my head with the csf fluid going into pouches in my spine where they should not be. This has been a nightmare for me to get this diagnosed. My herniation is only 3mm, one Neuro says I do not have Chairi, the other Neuro says I do. I have four grands that all have Ehlers Danlos and my two children have it also. I am trying to get answers (for years) for their sake as they get older. We all have sleep apnea and all my grands (4) and my children plus myself (28 yrs.) are on cpap and bipap. Thanks for listening and please help if you can. I am now in my 70’s - with lots of pain in back of my head, I don’t know how to proceed, - Huey
Goodness, sounds like you have a lot have a lot of things going on, a lot of questions, and not many answers coming your way. It can be quite a challenge when you do not have an easy diagnosis. I have found that if medical folk do not know what is wrong, it is best to keep going until someone knowledgeable is found. I am not sure if you have seen one, but a neurosurgeon might be a better candidate to read your MRI’s for their opinion. Ask if they deal with non-surgical treatment if you are not keen on that idea.
Good luck with your journey of finding answers for yourself and also your family.
I’m so sorry to hear about your pain, I have a small descent as well and so did my sister who had decompression and tethered cord surgery which helped her a lot. Have you heard anything about a tethered cord? I don’t believe it shows up on an MRI. Myself and my sister have EDS and have chiari with a small descent. I would pursue looking into chiari and tethered cord? (I’m fairly new to this but I hope this helps!) xoxo
Here in Canada they say it is not a Chiari malformation if the herniation is under 5mm. My granddaughter who is two had a 6,1mm shown in an MRI done in July and the neurosurgeon said it was too small to cause any symptoms. It has now grown to almost 9mm so a big increase in 4 months and they still say it is very small. Only symptoms is sleep apnea that causes her heart rate to slow in the 30s range and oxygen in the 80s, but it doesn’t’ Happen every night. We have gone to see an acupuncture in the meantime and no more sleep apnea since. She is only 2 years old. Do the specialist in the states take a Chiari 1 malformation seriously because here they don’t
thank you very much! I saw a new Neuro. today and he told me to throw out the report that said I did not have Chiari (because my herniation was 3 mm not 5 mm). He says I do have it.
I am having a very difficult time finding someone that knows about this. I think I did finally find one today. I pray your granddaughter gets the medical attention she needs. This is hard on adults and doubly hard on children… thank you for your reply.
thank you very much Britt, you have been very helpful.
I am feeling like the doctors know nothing about chiari so out of sight out of mind. If they don’t believe it, it isn’t happening. I am talking family doctors.
Wrumble, you are so right… illness bad enough then we have to convince these “doctors” we are sick.
Especially when she misdiagnosed me and I had to find a neurosurgeon myself. Then I had shunt surgery n a chiari surgery n she says my symptoms I still have are not chiari. She says people go their whole entire lives without having symptoms from chiari. So what does that mean? I guess I am just crazy. Really?