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Ehlers-danlos syndrome - Online Doctor Chats

Date : 21-Feb-2012
User rating for this question
Very Good Posted in: Headache and Migraines
Answered by

General & Family Physician
Practicing since : 2009
Answered : 675 Questions
User :   I have cervical spondylosis with arthropathy and have Ehlers-Danlos Syndrome (mixed type) with craniocervical instability. I tried to have chiropractic decompression about 2 months ago, but after the 2nd session, I had a seizure - 4 minutes long - with decorticate posturing and loss of consciousness, I have been having excruciating headaches and other symptoms, but mainly headaches. They start in the back of my head, where the hole in the skull is, and radiate to behind my eyes, mainly on the right side. The MRI last year showed a narrowing of the spinal canal, but not strictly meeting criteria for stenosis (10.8 mm). The headache NEVER goes away completely, and I have been taking 5 mg hydrocodone every 4 hours, and 650 mg aspirin every 6-8 hours, and am still hurting. I had another MRI done 2 weeks ago, but do not see the doctor for 4 days. The doc tried neurontin, which eased the pain in my arm, but didn't help with the headaches. Do I need to go to the hospital if the pain gets severe? Laying with my head upside-down on the edge of the bed makes me feel very altered, but lowers the intensity of the pain somewhat.
Doctor :   hello
Doctor :   give me a min please, let me go thru your query
User :   ok, thank you
Doctor :   may i know your age and gender please ?
User :   28 yo female
Doctor :   and since how long you have been having this problem now ?
User :   since i went bungee jumping in late 2009, that's when the headaches started, the neck pain has been there on and off since about 2002
Doctor :   ok
User :   i have some pictures of the old MRI from last year, if you'd like to review them, and also pictures of the joints that are hyperextendable
Doctor :   do you have any visual symptoms when the headaches happen ?
User :   when i bend over, yes
User :   it's like sparkles, like glitter
Doctor :   sure please do email me the reports
User :   ok, i'll send the links, i don't have the MRI report with me at the moment, let me send all the pics to that email
Doctor :   ok let me go thru them . give me a min please
User :   ok
Doctor :   so the pain is constant ?
Doctor :   and its only the medications thats been keeping the pain down ?
User :   yeah, pretty much, unless i lay upside down
User :   it's weird that aspirin seems to help more than the vicodin at this point
Doctor :   i see
Doctor :   well have you discussed your condition with a spinal surgeon ?
User :   that's who i've been seeing, he wants to do a rhizotomy
User :   dr. brown, mckinney, tx
Doctor :   ok
User :   he ordered a new MRI and a 3-view x-ray, and upped the dose of my pain meds to 5mg every 4 hours instead of 7.5 every 8 hours
Doctor :   well in your case i can understand that you are in tremendous pain and also on high doses of steroids and pain killers to curb the pain and having symptoms with movement, therefore its HIGHLY RECOMMENDED that surgery is the best option in this case
User :   ok, that's what i was wondering...i'm just concerned with a chiari-type situation with any kind of swelling or herniation making the pain constant
Doctor :   Rhizotomy is the procedure of choice
Doctor :   and it will be a big relief for you
Doctor :   as the medications are only temporary holding up the pain
Doctor :   but we need to curb the cause
Doctor :   so that you can live a pain free normal life
User :   i had facet joint injections last year that got rid of the headaches for several months
Doctor :   these are all temporary procedures which will help for few months or days .
User :   the cervical traction was supposed to "fix" the problem, but it felt like it "fixed it" too quickly and maybe put too much pressure on the cerebellar tonsils
Doctor :   the area in question is extremely DELICATE and we can never 100% predict the outcome
User :   i know, i'm just wondering if I should go to the hospital if it gets to the point where i'm altered loc or can't stand up without passing out or something
Doctor :   yes please
Doctor :   you should
User :   ok, that's what my boyfriend is concerned about, he's had to deal with me being like this, and doesn't know when to just take me to the ER and when to just let me go pass out on the bed, you know? thank you for your advice
Doctor :   infact you should set up and appointment
Doctor :   your most welcome
Doctor :   take care of yopur self
User :   thank you, i will
Doctor :   good bye
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