Guest guest Posted May 26, 2012 Report Share Posted May 26, 2012 Hi Dori, I can certainly confirm that quite a few of the symptoms sound like those I've had (or still have). People with Ehlers Danlos often have Chiari Malformation 1, or low-lying cerebellar tonsils (sometimes referred to as Chiari 0). As far as I know, I inherited my Chiari type condition from my fathers side and my EDS from my mothers, who could do the thumb thing. Having said that, I was mainly fit and well throughout my life with loads of stamina and endure capabilities. I'd a sharp brain too, I was a high achiever, so it didn't hold me back. As I child, I too was always going over on my ankles and knees. My legs were always thin and I found I couldn't keep up with the others at running (but I didn't care too much because I could whack a rounders ball and really hurl a javelin!!). I did develop debilitating low back pain, when they took out my 2nd ovary (and didn't put me on HRT - for almost 3 years!!). They took a scan and said I had the spine of a 70 year old (when I was only 36!) and they picked up I had a 'rogue' disk. After eventually getting on HRT, this all soon diminished, thank goodness and within a few years my spine was back to normal. I lost my first ovary with a dermoid ovarian cyst (and several others) when I was only 11 years old. The trigger point for me was having a head and neck injury - that started a cascade of weird and wonderful (NOT) symptoms and I slowly lost my independence. I've had velvety skin all my life, except my upper arms, on which you could feel very small pimples. All my skin was strong and so was the tissue underneath it. However, this has not been the case since my accident. I now cannot wear anything with a texture to it, as it leaves an impression on my skin and the area soon becomes sore. My legs even adopt the fine pattern from the smooth support hose that I wear and when I wash them, it sounds like I'm washing a plastic tablecloth! When they tested me for 'Fibromyalgia' by prodding me the discomfort was so similar to the general body pain I seemed to have all over, that I didn't bother saying it hurt. My blood pressure was low side of normal before but, since my accident I now develop higher blood pressure if I stay upright for any length of time. I haven't been diagnosed with it but it sounds like Neurally Mediated Hypertension to me. Heat used to make me ratty before my accident but after my accident I was always cold so needed the heat up abnormally high. My temperature is nearly always low too and sometimes I wake up almost Hyperthermic and it takes me quite some time to build it up to a reasonable level. I have the purple feet (and legs) from time to time, I used to get serious pain in my leg when this first started, so bad it made me cry. I have both bleeding and clotting issues. I'm often dizzy and lose my balance, especially on uneven ground, or if I change direction. I have heard someone else talk of the 'ch ch' sound when moving their head - I think it was Dr Driscoll (at prettyill.com). She has some wonderful videos on her website. I watched the 2 videos where she describes her symptoms (each one is about 10 minutes long) - she had so many symptoms that were exactly the same as mine! Regards Barbara (UK) For your information my diagnoses (so far) are: Postural Orthostatic Tachycardia Syndrome (POTS); Peripheral Vestibular Dysfunction; Empty Sella; Small Fibre Neuropathy; Mild Radiculopathy; Craniocervical Instability (CCI); Retroflex Odontoid; Low-Lying Cerebellum (Chiari 0); Diminished CSF flow; Elongated Brainstem; Cranial Settling; Posterior Gliding; Whiplash Associated Disorder (WAD); Ehlers Danlos (EDS); and now Osteoarthritis! After reading The Driscoll Theory (it's marvellous) and checking my MRI's) I also think I have : External Communicating Hydrocephalus; Chronic Cerebro Spinal Venous Insufficiency (CCSVI); and Mast Cell Activation (MCAD) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2012 Report Share Posted May 27, 2012 check here for symptoms http://chiarione.org/symptoms.html <http://chiarione.org/symptoms.html> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2012 Report Share Posted June 3, 2012 Hello Everyone, I was diagnosed in 07 as borderline Chiari ( 3mm) but have recently gotten worse ( my neurologist says that's not possible) getting referral for Neurosurgeon in NC or VA. I've had severe hedaches, trouble swallowing, neck pain, numbness in left arm, metal taste in mouth, dizziness to the point of falling down when headache is severe. I was diagnosed last month with Basilar Migraines but was told none of my symptons are Chiari related! I have Complex Regional Pain syndrome from car wreck in 06 and had a Spinal Cord Stimulator implanted in 08 so MRI's are out for me. I will probably be a " luker " for awhile but just wanted to wish everyone a low pain day and welcome any & all help with dealing with this crazy diagnosis. Take Care, Beth Radigan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2012 Report Share Posted June 4, 2012 There is no such thing as " borderline " Chiari. That's the same as saying someone is a little bit pregnant. Either your brain fell out of your head or it didn't. Tell that drug dealer neurologist of yours to shove it and find a new doctor. From: [mailto: ] On Behalf Of Beth Sent: Sunday, June 03, 2012 4:56 PM To: Subject: My Introduction Hello Everyone, I was diagnosed in 07 as borderline Chiari ( 3mm) but have recently gotten worse ( my neurologist says that's not possible) getting referral for Neurosurgeon in NC or VA. I've had severe hedaches, trouble swallowing, neck pain, numbness in left arm, metal taste in mouth, dizziness to the point of falling down when headache is severe. I was diagnosed last month with Basilar Migraines but was told none of my symptons are Chiari related! I have Complex Regional Pain syndrome from car wreck in 06 and had a Spinal Cord Stimulator implanted in 08 so MRI's are out for me. I will probably be a " luker " for awhile but just wanted to wish everyone a low pain day and welcome any & all help with dealing with this crazy diagnosis. Take Care, Beth Radigan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2012 Report Share Posted June 4, 2012 Just for your own sake, check out all chiari related syndromes. One of them could be causing more of these symptoms, and you may not need to have to go through a decompression yet. This is what happened with my daughter, and we now regret pushing at our NS for a decompression because so many symptoms that could have been chiari related but are not where showing up. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2012 Report Share Posted June 4, 2012 Ummm....! That sounds very similar to my story except they wouldn't even diagnose me as borderline chiari. They said there was no way my symptoms were caused by something like Chiari. But low and behold, I'm 3.5 years post decompression and 90-95% back to living a " normal " life! Definitely see a Chiari expert if you want to get some real help. Welcome to the group! Cortney Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2012 Report Share Posted June 4, 2012 Beth,hi.. Welcome to CCI ...I am sure that you will get a lot of good information and help here. Relying on a Neurologist for most chiari information is not the best plan. Most have very limited experience with it. Another opinion for a chiari-knowledgeable doctor is a " good thing " . But please be aware that even with neuro-surgeons, not all have this knowledge either. You may well have to travel to find one, but it is worth it. This may be of some help in finding one: http://www.chiariconnectioninternational.com/map.html The term " borderline " is used differently by different medical professionals in regard to chiari. Some base it merely on the length of the herniation, which is pretty inaccurate. Someone can have a pretty small herniation and some pretty horrific symptoms. Also others can have a herniation that would " qualify " as chiari but few, if any symptoms. This makes the need for a really experienced chiari doctor soooooooo important. Many of the symptoms that you describe could well be chiari based. This may be of interest. http://www.conquerchiari.org/subs%20only/Volume%202/Issue%202(5)/Wide%20Range%20\ Symptoms%202(5).html .... and again please don't rely on what you have just been told about chiari/symptoms. It could well have been the car accident that was the trauma which caused your chiari to become symptomatic. This is the norm. Please continue to ask questions that may be of help to you..... their are many here willing to share information. All best wishes, Sally R... Decompression '91, Hydro, VP shunt, 2 shunt revisions, Feeling pretty good on NO meds in Bethlehem,Pa PS..My " story " http://www.chiariconnectioninternational.com/goodstories2.html Scroll down to SALLY My Introduction > Hello Everyone, > > I was diagnosed in 07 as borderline Chiari ( 3mm) but have recently gotten > worse ( my neurologist says that's not possible) getting referral for > Neurosurgeon in NC or VA. I've had severe hedaches, trouble swallowing, > neck pain, numbness in left arm, metal taste in mouth, dizziness to the > point of falling down when headache is severe. I was diagnosed last month > with Basilar Migraines but was told none of my symptons are Chiari > related! > > I have Complex Regional Pain syndrome from car wreck in 06 and had a > Spinal Cord Stimulator implanted in 08 so MRI's are out for me. > > I will probably be a " luker " for awhile but just wanted to wish everyone a > low pain day and welcome any & all help with dealing with this crazy > diagnosis. > > Take Care, > Beth Radigan > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2012 Report Share Posted June 4, 2012 I like your style! I have done just that... > > There is no such thing as " borderline " Chiari. That's the same as saying > someone is a little bit pregnant. Either your brain fell out of your head > or it didn't. > > > > Tell that drug dealer neurologist of yours to shove it and find a new > doctor. > > > > From: > [mailto: ] On Behalf Of Beth > Sent: Sunday, June 03, 2012 4:56 PM > To: > Subject: My Introduction > > > > > > Hello Everyone, > > I was diagnosed in 07 as borderline Chiari ( 3mm) but have recently gotten > worse ( my neurologist says that's not possible) getting referral for > Neurosurgeon in NC or VA. I've had severe hedaches, trouble swallowing, neck > pain, numbness in left arm, metal taste in mouth, dizziness to the point of > falling down when headache is severe. I was diagnosed last month with > Basilar Migraines but was told none of my symptons are Chiari related! > > I have Complex Regional Pain syndrome from car wreck in 06 and had a Spinal > Cord Stimulator implanted in 08 so MRI's are out for me. > > I will probably be a " luker " for awhile but just wanted to wish everyone a > low pain day and welcome any & all help with dealing with this crazy > diagnosis. > > Take Care, > Beth Radigan > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2012 Report Share Posted June 4, 2012 Sally, Thanks for the warm welcome & wonderful links. I have been in touch with my insurance company this morning to help find me a specialist. I have fired my neurologist & I am " interviewing " specialists! lol Hopefully, I will find the right one. I look forward to learning as much as I can from all of you & maybe add a few cents worth along the way. Take Care, Beth > > Beth,hi.. > Welcome to CCI ...I am sure that you will get a lot of good information and > help here. > > Relying on a Neurologist for most chiari information is not the best plan. > Most have very limited experience with it. Another opinion for a > chiari-knowledgeable doctor is a " good thing " . But please be aware that even > with neuro-surgeons, not all have this knowledge either. You may well have > to travel to find one, but it is worth it. > > This may be of some help in finding one: > http://www.chiariconnectioninternational.com/map.html > > The term " borderline " is used differently by different medical professionals > in regard to chiari. Some base it merely on the length of the herniation, > which is pretty inaccurate. Someone can have a pretty small herniation and > some pretty horrific symptoms. Also others can have a herniation that would > " qualify " as chiari but few, if any symptoms. This makes the need for a > really experienced chiari doctor soooooooo important. > > Many of the symptoms that you describe could well be chiari based. This may > be of interest. > http://www.conquerchiari.org/subs%20only/Volume%202/Issue%202(5)/Wide%20Range%20\ Symptoms%202(5).html > ... and again please don't rely on what you have just been told about > chiari/symptoms. > > It could well have been the car accident that was the trauma which caused > your chiari to become symptomatic. This is the norm. > > Please continue to ask questions that may be of help to you..... their are > many here willing to share information. > All best wishes, > Sally R... Decompression '91, Hydro, VP shunt, 2 shunt revisions, Feeling > pretty good on NO meds in Bethlehem,Pa > PS..My " story " > http://www.chiariconnectioninternational.com/goodstories2.html Scroll down > to SALLY > > > My Introduction > > > > Hello Everyone, > > > > I was diagnosed in 07 as borderline Chiari ( 3mm) but have recently gotten > > worse ( my neurologist says that's not possible) getting referral for > > Neurosurgeon in NC or VA. I've had severe hedaches, trouble swallowing, > > neck pain, numbness in left arm, metal taste in mouth, dizziness to the > > point of falling down when headache is severe. I was diagnosed last month > > with Basilar Migraines but was told none of my symptons are Chiari > > related! > > > > I have Complex Regional Pain syndrome from car wreck in 06 and had a > > Spinal Cord Stimulator implanted in 08 so MRI's are out for me. > > > > I will probably be a " luker " for awhile but just wanted to wish everyone a > > low pain day and welcome any & all help with dealing with this crazy > > diagnosis. > > > > Take Care, > > Beth Radigan > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2012 Report Share Posted June 5, 2012 Thank you to everyone who replied to my intro (both here and by email). I'll take a look at your suggestions. My apologies for taking so long to reply; my energy is so low that it takes me a long time to do everything, including responding to email. dorij > > Hello, > I found out about chiari on one of my endless Google searches trying to find a reason for one of my many physical difficulties. This time I was trying to find out why I keep getting hang-nails, my cuticles are always ragged, some are hard, and some are encroaching on my nails. For years I've been (guiltily) using a razor blade to trim them. > Quote Link to comment Share on other sites More sharing options...
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