Just curious how many people on here have been dx'd with Ehlers-Danlos along with the Chiari? It seems like a reoccurring theme...Chiari, Ehlers-Danlos, Endometriosis, Scar tissue build-up etc.
Endometriosis?? Really?? I have that as well. Never heard about that being a common thing. Wow.
it makes you wonder if there is a correlation between Chiari and Endometriosis.
I don’t have Ehlers-Danlos (as far as I know anyway), but I do have Chiari, Syringomyelia, and Endometriosis. I know of at least two others here that also have Endometriosis.
Not sure but my son is being evaluated by a geneticist in Sept for EDS. Had to talk to a medical couselor and go over his medical history just to get the appt but after we did, she said he needed to be evaluated for it. shrug. We'll see.
I fought Endometriosis from the time I was 11 until age 38 (last year) when I ended up having a full hysterectomy. I went through two very painful rounds of Lupron injections over the years and several surgeries to remove the growths. I was diagnosed w/ migraines 10 years ago, and just very recently w/ Chiari... during my last Lupron round (which puts you into artificial menopause to kill off the Endometriosis) I found myself becoming very emotional and angry (surprising even myself) - and now that I think about it, my headaches got worse during that time...
Anyone else notice a correlation of any kind or go through these injections and notice a tie-in to their Chiari?
Well, now that I read your post I also realize that besides my son being evaluated for EDS(per previous post), my neuro did mention a connection between menopause and migraines. My migraines were diagnosed when I was 17 (my son was 17 when he was diagnosed with Chiari and migraines) but my Chiari wasn't diagnosed until last year when I was 43. My migraines and what I now realize were Chiari headaches increased dramatically last year leading to the mother of all headaches I had had previously which led to the first CT diagnosing the Chiari. My neurologist, who is also a headache specialist, mentioned that it was common for migraines to increase as we approached menopause due to fluctuating hormone levels and I had been having premenopause symptoms for the previous 2 years(7 months no period, hot flashes, etc). SO, if your body was forced into early menopause, it only makes sense that your headaches would have increased during that time frame as well, if we follow her logic.
Type III EDS for me. I'm supposed to go to a specialist as soon as I finish this long questionnaire. Somewhere in between the little boot camp I'm trying to follow to get myself up to speed for work in the fall after 1.5 years off from recovering from surgery. I had a decompression, cranial fusion, and partial correction of a crazy basilar invagination back in Jan. 2011. My physical therapist is an all-around queen and taught me what normal motion is, because if you have EDS, you don't know normal and end up hurting yourself repeatedly.
When I read atricles about EDS, it says it is common for an EDS patient to have hyperflexibility in their joints (double jointed). I am not by any means double jointed, but I am curious if you have other symptoms that are present from the EDS.
Dandangenki said:
Type III EDS for me. I'm supposed to go to a specialist as soon as I finish this long questionnaire. Somewhere in between the little boot camp I'm trying to follow to get myself up to speed for work in the fall after 1.5 years off from recovering from surgery. I had a decompression, cranial fusion, and partial correction of a crazy basilar invagination back in Jan. 2011. My physical therapist is an all-around queen and taught me what normal motion is, because if you have EDS, you don't know normal and end up hurting yourself repeatedly.
Hi everyone,
We are live with the stand-alone network for Ehlers Danlos Syndrome Support Group: http://www.ehlersdanlossyndromesupport.org/
Note it asks for your full name when you sign up but do a screen name. We're not able to edit the signup form right now.
Please spread the word!
Scott
I was also dx'd w/ Endometriosis after years of pain and several surgeries, they finally found it and I had a Hysterectomy in 2007 at age 32. At the time I was unaware I had Chiari, but recently discovered taht a NL I was seeing for seizures back in 2004, read my MRI report that stated I had Chiari (6mm, now 8mm) and he never bothered to tell me. I wish he had, it would have saved me the last three years of tests, numerous specialists, my sanity, not to mention a great deal of money. You are right Nicole, I'm noticing the same thing myself, perhaps there is a connection there! As far as the EDS, I'm not sure if I have it, but I'm hoping this new NS i'm seeing in a couple weeks will test me for it. Which brings me to my question, how do they test for EDS? I'm definately going to insist they test me for POTS, being that the cardiology issue is what led me to my recent Chiari dx. Good question Nicole!
We have a new EDS -Ehlers Danlos Syndrome Forum-http://en.wikipedia.org/wiki/Postural_orthostatic_tachycardia_syndrome
It just started. Abby and Barb Salisbury is great to talk to about EDS. We also have a Chiari & EDS Group on this Forum. I am educated but not an EDS expert it can be very complicated. I think just as many Chiarians have POTS- Postural Orthostatic Tachycardia.
Tracy Z.
Well, thank goodness for small miracles! I have not been told that, and in reading about it, I don't have any of what it describes. Wheeew! One thing I "don't" have. : ))
OH.....I have had a mitral valve prolapse since about 20 years of age....am 44 now. That seems to be worse since developing my chiari as well as, if I don't eat often....it will make me feel horrible....terrible head pain and nauseas, my brain shuts down even more and have no memory or ability to think clear at all. That is something new since developing my chiari and has gotten worse over the past years of having it. Don't know what that is about or what causes it, but it's scary at times and unnerving at others.
My daughter, who is 4 years old, has both EDS and Chiari. She is not officially diagnosed with EDS yet, as they won't officially diagnose her until she is at least 6...but we have seen 2 geneticist (including Dr. Tinkle, who specializes in EDS), and both feel she has EDS based upon the Brighton and Beighton Scale, and skin involvement. We have been told that if she has decompression, she will most likely need a cervical fusion from Occiput to C2 at the same time.
Duke University, who is running the genetic study on Chiari, has now added questions and tests regarding EDS to their research, as they kept hearing so much about the two correlating. Dr. Franmancano, and EDS expert in the DC area, feels that EDS may be a cause of Chiari in some of the population, due to things like instability, cranial settling, abnormal clivioaxial angles, etc.
Have you seen a doctor familiar with Dysautonomia and POTS? Google them, and see if possibly the symptoms fit possibly.
mariarich37 said:
OH.....I have had a mitral valve prolapse since about 20 years of age....am 44 now. That seems to be worse since developing my chiari as well as, if I don't eat often....it will make me feel horrible....terrible head pain and nauseas, my brain shuts down even more and have no memory or ability to think clear at all. That is something new since developing my chiari and has gotten worse over the past years of having it. Don't know what that is about or what causes it, but it's scary at times and unnerving at others.
Thanks. I'm going to look into these conditions. Usually once you have one condition....you are more prone to getting others. So thanks for the notice. I'll let you know what I think.
Have a good eve
Do you know how common this is...for people with chiari to have EDS? Have you heard or done any research on it?
Abby said:
Diagnosed October 2012
When my son and I were diagnosed with EDS by a geneticist, she said that 12% of patients with EDS also have Chiari. We both have both conditions. Genetic lottery winners. Yes, that;s sarcasm. :)
Hi,
I am wondering.....how did they diagnose your EDS? Is it all by blood work or that way and another way? Did your insurance cover the test? And one last thing.....what all symptoms were you having that made them test you for it?
Sorry to bombard you with questions....
Thanks,
Maria