I found the link below whilst thinking of how I can possibly get someone to take a member of my family's severe neck issues seriously. Apart from the obvious & repetitive reply, which is EDS is a painful condition etc..
I find it fascinating that in the UK Chiari is rarely mentioned in association with EDS, yet in the US I increasingly find more and more blogs with people diagnosed with EDS being treated for symptoms associated with Chiari. I don't know why this condition is not really discussed even by the professionals renowned for their knowledge of EDS in the UK.
It seems many symptoms including POTS, swallowing difficulties, ear problems and more are associated. I find the reading of the surgery for this condition really pretty scary. I have read recently of some sort of scandal associated with a doctor there who treats Chiari EDS patients?
There is a Chiari Institute in the US which it seems on reading blogs patients travel thousands of miles to for help.
I am left confused really about the whole thing because in the UK mention the word Chiari to a medical professional & there is a stony silence. Please don't misunderstand me I don't yearn to have this or think I have it already. Its a complex medical condition and to be honest much of it mystifies me. But I do wonder why my (& other family members with EDS) neck and associated issues have never been explained or in fact treated, when in the US it seems common place that if you have EDS there is a high probability that you also have Chiari Symptoms.
http://www.nwrei.org/downloads/Education/Francomano.pdf
12 comments:
It's the same here. I've got EDS, but nothing is ever made mention of other things associated with EDS.
I admit I'm mystified as to why they would be "stony" when asking about a Chiari's connection. After all, Chiari's is fairly easy to diagnose. After all, it's never *just* EDS. It seems that one genetic condition often is related to or leads to other physical problems. But doctors can be unaccomodating at times. And sometimes you have to push them to do their job.
i know what you mean, my neck has been the bane of my existence for more than several years now, and nobody (neurologists, neurosurgeons) could figure out what i was talking about until i did enough research myself and found the Chiari Institute online. i have classical type EDS, but not Chiari I malformation; just low-lying cerebellar tonsils. i actually have an appointment there tomorrow, i'm looking at probable invasive cervical traction as a diagnostic study before fusion surgery. this article might be very helpful if your/your family members' situation is anything like mine: http://thejns.org/doi/abs/10.3171/SPI-07/12/601?url_ver=Z39.88-2003&rfr_id=ori:rid:crossref.org&rfr_dat=cr_pub%3dncbi.nlm.nih.gov
good luck with everything, i'll keep checking in to your page!
The link between EDS and Chiari malformations is relatively well known in the EDS community. I've never had any of my doctors (in Canada) mention the possibility of it, and they seem fairly unwilling to send me for tests regarding my not-quite-EDS-related symptoms.
It seems that most doctors feel that being a medical zebra is enough, let alone having one patient be a whole herd of zebras.
I hope your family finds some answers.
Hi! I am very interested in your interest in this... Mostly being that I have a chiari, all be it small compared to some, it is a result of the lax joints in the neck making everything "settle". If I didn't have EDS, I probably wouldn't have a chiari.
Also I have been to the Chiari Institute that you refer to and I traveled more than 2000 miles to get there (air plane of course ;) ). I can tell you that even here in the US we have a difficult time getting this diagnosed. The Institute has seen/treated many of us that have the ED/Chiari combo because many other neurosurgeons simply don't "believe" in the coexistence. It seems rather taxing and frustrating that they could not possibly see the connection, it's so obvious, but I think it is more an issue with lack of knowledge and bad education that led doctors to think the way they do.
I sat in front of my last neurologist (before the institute) with printed out pictures of my chiari and measurements drawn out and EDS in my conversation and she flat out refused to listen. Cut me off, said "absolutely not, that is not what it is."
The other problem you run into is that with Chiari in EDS the chiari tends not to fall under the traditional "rules for diagnosing" a chiari. They are usually less than 5 mm, and being that the diagnosing imaging is MRI, well, upright an EDSer's chiari may be more protruding than laying down in an MRI. PLUS, as we get more tired our joints get more lax, so maybe I'm not so bad in the morning, but by 6pm I can't hold my head up, and around "that time of the month" well, you can just forget it...
I think because doctors cannot pinpoint the same symptoms with the same protrusion with the same diagnosis it makes them nervous to even attempt to take it seriously.
The "scandal" with the Chiari Institute was a mere blip in their history of helping people. Not everyone has successful surgery, and as such, some people in the US like to take advantage of our system of lawsuits. It's so easy to sue now days. As far as the patient scheduled for surgery, there are certain protocols in the US that surgeons/hospitals must follow before proceeding with surgery, and those protocols were not followed by the hospital staff and anesthesiologists. That patient should have never been put to sleep without the surgeon present.
I must say, that I, like many others feel so blessed by the Chiari Institute because the physicians there took us seriously. They understood our symptoms, and even symptoms we had that we ourselves did not recognize as such. I wish there were a better way to raise awareness that chiari, retroflexed odontoid, brainstem compression, and the laxity in the head/neck need to be taken more seriously in EVERY EDS patient, here and in the UK! Sorry this is so long, I really feel strongly about this! =)
Oh, and thanks for all your encouraging and warm comments on my posts! It's been a very rough time lately. I wish more doctors could see the day to day , maybe they should read my blog too...
Nite! =)
Oh, and one more thing I forgot...
I am a nurse in an orthopedic childrens hospital here in Texas where we do one form of this surgery that you read about on a daily basis on children. The surgeons I work with perform the fusion part of the surgery on children with spinal instability and cervical instability all the time. It is a big surgery from the standpoint of the patient, and as a person with a more rare and complicated disorder it is a big surgery for those who have multiple problem with healing, osteoporosis, etc.
So, yes it is a bit of a scary surgery. But the surgeons I work with I know take extraordianry care of their patients. I was told by one of the neurosurgeons at the Chiari Institute that as far as surgery goes, it is not a very complicated surgical procedure, however he would have to fuse my neck from my head down to cervical vertebrae number 6, being almost all of my neck, and as such it would take away about 60% of the motion in my head/neck and that part is what makes this surgery a big deal, along with complications EDSer's suffer on general.
That is why they always chose conservative symptom management first. Physical Therapy to strengthen the neck and back muscles, with traction on the head and neck periodically to relieve symptoms. That is one way they know the cause is chiari and instability is if traction on the head takes away the symptoms. Then when the conservative are not enough (and for some it can be enough), then they consider surgery.
If you would ever like to discuss this more, as a health professional and as a patient with this very problem, I would have no problem talking! I feel very strongly about this issue and hope to one day do a great deal of research/awareness when I finish my Nurse Practitioner. Hahaha.
Ok, all seriousness aside, have a BEAUTIFUL and painfree night! =)
wow - thanks for the comments people.
I have a feeling that no matter how much we push on this one we will not get anyone to make any chiari related diagnosis. Is there any UK EDS'ers out there who have even had it mentioned, investigated or got anything other than a raised eyebrow when mentioning in association with EDS - I think probably not!
I do not know much about this condition and I am glad to be here learning from you. =)
Interesting!
My anaesthetist this week was very insistent on asking questions about my neck movements, prior to putting me off to sleep.
She seemed to be fairly knowledgeable about EDS and was aware of the difficulty of accessing veins.
I think I might pick Prof B's brains on this subject next time I see him as like you I'm seeing Chiari referred to more and more but it's never been mentioned by any of the specialist medics I've seen.
I couldn't tell you why, but every instinct I have goes into wibble overdrive whenever I see Chiari mentioned. Hope you're doing well now my friend, BG Xx
Hi BG sorry am so busy reading blogs I forget about my own! It would be great if you could pick Professor B's brains on this one. One theory I heard was something do with the different health systems in the US compared to NHS here. It just seems to me that particularly with my relative that many symptoms sooo point to chiari that I can't believe no one will investigate the possibility or even have the discussion. Thanks so much for the comment its great to see you here. Not that I am writing much these days.
I had never heard of chiari until right this minute. I will have a talk to Veronica about it. thanks. and thanks to Trish for her lovely informative comment x
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