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Ehlers Danlos

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  • Ehlers Danlos

    Just an update for the other zebras. I'm officially part of the herd. I saw the geneticist in Baltimore last month and was diagnosed officially with EDS Hypermobile type with atrophic scarring and easy bruising. Dr. Francomano was VERY concerned about tethered cord and craniocervical instability as well. She was happy I already had an appointment with Dr. Henderson that week as well. I am still waiting to hear the results of the CT and MRI he ordered. My neuro exams they each did were less than spectacular. If it was a XC course I would have had lots of refusals.

    So, I know there are other EDSers here. Just wanted to let you guys know there is another one now too. Of course I have added tons of other acronyms in the last few months too but I don't want to get in to all of them here. I have more than one "very rare" disease or syndrome in my med chart. So much for my former neuro and his "do you know what the odds of you having Ehler Danlos Syndrome are?" Ass.
    "You are a child of the universe, no less than the trees and the stars;
    you have a right to be here." ~ Desiderata by Max Ehrmann

  • #2
    Yuck, so sorry to hear that. Jingles for some good news from the Drs.
    McDowell Racing Stables

    Home Away From Home

    Comment


    • #3
      And so glad you followed this through.
      www.specialhorses.org
      a 501(c)3 organization helping 501(c)3 equine rescues

      Comment

      • Original Poster

        #4
        And to keep this horse related I am hoping to get in another session at the therapeutic riding center before the neurosurgeon puts the kabosh on the whole thing. The riding center made me have the neuro sign off on it last time and that was before an EDS diagnosis and all the others. Here's hoping.
        "You are a child of the universe, no less than the trees and the stars;
        you have a right to be here." ~ Desiderata by Max Ehrmann

        Comment


        • #5
          So sorry to hear this. I worked with a teen with EDS dx at Hopkins also. Riding was one of the activities they let her do in lieu of gym at school. Wishing you luck.
          ********
          There is no snooze button on a cat that wants breakfast.

          Comment

          • Original Poster

            #6
            Well, a quick (sarcastic) update: Neurosurgeons's office called this morning to tell me that I'm "fine." From a neurosurgical standpoint there is nothing wrong with me. When asked if I would get a report to that effect I was told there was really no need because it would just say that I'm fine and there is nothing to fix.

            To say I am frustrated is a bit of an understatement. I'm happy not to need fusion or surgery, but VERY disappointed that there were no other suggestions offered. The office staff suggested I contact my geneticist for ideas on how to address the issues I am having. So, apparently having absent or +1 reflexes, balance, vertigo, and a whole host of other issues is not anything neurosurgeon can help me with.

            I understand that surgeon's fix things with knives, but I guess I was expecting more in the way of referrals or suggestions because of his prominence in the EDS community. I will confer with the geneticist by phone in a couple of weeks, have a message in to my PCP, and saw my kick ass PT Friday. My advancing neurological symptoms are being caused by something. The fact that an opinion or read on my lumbar MRI (and the destroyed discs) was not even offered is disappointing too. I was hoping for a report for my file, even if there was nothing to be done about it.

            GRRRRRRRRRRRRRRRRRR.

            I am now told that I should check with his office to be sure the doctor actually read my films. Others have had experiences where the office staff called to say "you're fine" and then a week later the dr called to contradict that. For now though, I have lost 90% of my reflexes (or they are supressed), my condition continues to decline, but I'm fine! Guess I can still get cleared to ride after all. See? I knew there was an upside. *eye roll*
            "You are a child of the universe, no less than the trees and the stars;
            you have a right to be here." ~ Desiderata by Max Ehrmann

            Comment


            • #7
              You said you were at Johns Hopkins. Are you in MD? If so I would recommend a visit to my Dr. He is fantastic.
              McDowell Racing Stables

              Home Away From Home

              Comment

              • Original Poster

                #8
                I wasn't at John Hopkins. I was there to see another prominent neurosurgeon though. I will be traveling to Baltimore often to see my geneticist though. Taking suggestions for competent neuro's. Feel free to PM me. Thanks!
                "You are a child of the universe, no less than the trees and the stars;
                you have a right to be here." ~ Desiderata by Max Ehrmann

                Comment


                • #9
                  My sister has it big time and refuses to get it checked any further. Supposedly it is affecting her heart. I guess me and my other sister are said to have minor parts of it? Don't know
                  Draumr Hesta Farm
                  "Wenn Du denkst es geht nicht mehr, kommt von irgendwo ein kleines Licht daher"
                  Member of the COTH Ignorant Disrepectful F-bombs!*- 2Dogs Farm

                  Comment


                  • #10
                    Welcome to the herd. It sucks to have the diagnosis but it's good to have something that explains what's going on.

                    I got a diagnosis earlier this year and have found that doctors have very different opinions on it. I got a workup from both a rheumatologist and a sports medicine doctor in our area, and have also been working with a spine/pain specialist, and last week had an appointment with a neurosurgeon at UCSF (Dr. Chou). The sports medicine doc organized a conference on EDS and the former president of the EDS association goes to the same clinic. The PT people there are very familiar with EDS. One doc (the rheumatologist) said that I should quit all potentially high impact sports, like riding and skiing. The sports medicine doc said I need to be careful lifting and that horse care (like mucking stalls) has been problematic for some of his other patients with EDS, but if I'm skilled at riding it's fine to keep doing it. You can guess which one I listened to. With respect to the spine and disc issues, it's really hard to tell how much is EDS and how much of is just degenerative. My husband and I are both in our forties and both have serious back problems, but he certainly doesn't have EDS. I have disc degeneration in both my lumbar and cervical spine, along with big bone spurs in the cervical area which are causing nerve damage and weakness in my right arm and hand. I've found that a mix of PT, especially with a person also trained in Pilates, medication and injections have been helpful with the lumbar spine. The cervical? Not so much. I just was prescribed a Saunders home traction unit by the neurosurgeon I met with at UCSF, and we are trying one more round of epidural injections. If that doesn't work I may be doing decompression surgery.

                    My advice is to keep looking for a good doctor, and you may need to interview a few to find one (or a few!) who meet your needs.

                    Comment

                    • Original Poster

                      #11
                      Thanks vali. I certainly am good at interviewing docs. I have gone thru a few specialists already. Some get to stay on "the team" and some get put on waivers. The most important are the hardest to fine it seems; a good rheumy (the good one here has a 5 year waiting list for new patients) and a good neuro (starting to think that's an oxymoron). I am really thankful to have a great PCP and PT who are keeping me held together and in appropriate meds (mostly.) I guess I got my hopes up thinking that an EDS expert would see the same issues his colleage saw and was happy I had self-referred for. To be told "you're fine" when I am so not fine was a huge emotional blow to the stomach. On the upside I can probably get in at least one more session at the riding center without needing to find a neuro to sign off again on my neck and spine since I'm "fine."

                      On a funny/sad note, I went to a local park for a walk yesterday and was told there was one short hill that was a little steep. It was ridiculous and between the POTS at the top and then the muscle fatigue that led to bone on bone pain the whole hike down I was getting a real reality check. The emotional toll of EDS is just as hard, if not harder than the physical sometimes. Of course it could be because of how quickly my body is falling apart.

                      Good luck to you. Stay active as much as possible. I was told that was why I was as healthy as I was/am for as long as I have been. I'm trying to stay active but with all the complicating factors it is hard.
                      "You are a child of the universe, no less than the trees and the stars;
                      you have a right to be here." ~ Desiderata by Max Ehrmann

                      Comment


                      • #12
                        He isn't a neuro but IS a miracle worker who pioneered many of the spinal techniques used everyday around the country.
                        http://www.drmcafee.net/
                        McDowell Racing Stables

                        Home Away From Home

                        Comment


                        • #13
                          I believe I ran across a mention awhile back, in an article on horse disease conditions actually (so this is HR!), that EDS in humans has some similarity to the connective tissue disorders in horses. The name of DSLD was recently changed to something I do not recall, but might want to do search engine search on DSLD. If they are actually related, some of the field trial things being used on horses might be worth trying. I believe Dr. Kellon was recommending AAKG (an amino acid) plus a Chinese herb jiaogulan aka gynostemma pentaphyllum. The combo has apparently helped some horses, and may be worth a try? Good luck and keep us posted!
                          ETA a URL:
                          http://dsldequine.info/

                          Jeanie
                          Last edited by sdlbredfan; Sep. 11, 2011, 11:27 AM.
                          Jeanie
                          RIP Sasha, best dog ever, pictured shortly before she died, Death either by euthanasia or natural causes is only the end of the animal inhabiting its body; I believe the spirit lives on.

                          Comment


                          • #14
                            The majority of people with some form of Ehlers Danlos are minimally symptomatic- they have a higher incidence of joint laxity, some are more prone to dislocations, but it does not shorten life span, and in general is just an incidental finding. Some few will have spinal problems, but this is the minority. My partner has Ehlers-Danlos- he can pull his neck skin out 6", he has dislocated his acromio-clavicular joint, but he is a surgeon, rides bikes 30+ miles per week, plays league basketball, has climbed many mountains, hiked in the Amazon,Patagonia, Keyna, Alps, etc.

                            Maybe if the neurosurgeon says the spine is ok, it is, and the fatigue and other symptoms are something else.

                            Comment

                            • Original Poster

                              #15
                              This is so completely offensive and insensitive that I don't even know where to begin. I am very glad for your partner that he is minimally affected by his (what I would guess is classic by your description) EDS. However, just because you know one person who has not yet been severely affected by their EDS does NOT mean that EDS is an "incidental" finding. And because you seem to have a very limited understanding of how EDS does affect the MAJORITY of those diagnosed here is one of the best descriptions I have ever seen. This is taken from www.everydaysyndrome.com

                              So what exactly is Ehlers-Danlos? It is a hereditary genetic connective tissue disorder that gives the sufferer faulty collagen. Collagen is the "glue" that holds the body together; it is a protein that makes up 30% of the body and 75% of the skin. It plays a major part in almost every system and organ of the body.

                              The following are SOME symptoms of Ehlers-Danlos, but - to be clear - the presence of some of these symptoms is common in many people and does NOT necessarily mean that you have EDS, so don't worry.....

                              Loose, unstable joints that are prone to sprain, dislocation, subluxation (partial dislocation) and hyperextension (double jointedness)
                              Early onset of osteoarthritis
                              Easy bruising
                              Dysautonomia typically accompanied by Valvular heart disease (such as mitral valve prolapse, which creates an increased risk for infective endocarditis during surgery, as well as possibly progressing to a life-threatening degree of severity of the prognosis of mitral valve prolapse)
                              Chronic fatigue
                              Flat feet, often with later onset
                              High and narrow palate, resulting in dental crowding
                              Vulnerability to chest and sinus infections
                              Fragile blood vessels resulting from cystic medial necrosis with tendency towards aneurysm (even abdominal aortic aneurysm)
                              Velvety-smooth skin which may be stretchy and is often translucent
                              Abnormal wound healing and scar formation
                              Low muscle tone and muscle weakness
                              Migraines and headaches, including postural headaches from spontaneous intracranial hypontension
                              Myalgia and Osteopenia (low bone density)
                              Talipes equinovarus (club foot)
                              Deformities of the spine, such as: Scoliosis (curvature of the spine), Kyphosis (a thoracic hump), Tethered spinal cord syndrome, Occipitoatlantoaxial hypermobility
                              Arnold-Chiari malformation (brain disorder)
                              Functional bowel disorders (functional gastritis, irritable bowel syndrome)
                              Gastroparesis
                              Dental issues, including early-onset periodontitis
                              Severe sleep disorders
                              Nerve compression disorders (carpal tunnel syndrome, acroparesthesia, neuropathy)
                              Vascular skin conditions: Raynaud's phenomenon, Livedo reticularis
                              Blue sclera
                              Swan neck deformity of the fingers
                              Insensitivity to local anesthetics and painkillers
                              Premature rupture of membranes during pregnancy
                              Platelet aggregation failure (platelets do not clump together properly)
                              Weak muscle tone (hypotonia) in infancy, which can delay the development of motor skills such as sitting, standing, and walking
                              Arterial/intestinal/uterine fragility or rupture

                              EDS patients have a very hard time being diagnosed for many reasons. The large scale of symptoms can look, from the outside, like a combination of many medical problems or, conversely, like plain old hypochondria. Some people, like me, are so afraid of being labeled "crazy" for talking about their symptoms that they spend their lives hiding the pain, the constant vomiting, the skin tears, etc. even when they can't hide the torn muscles, broken bones and dislocated joints et al. Some sufferers never even know that there is an explanation for their strange combination of bodily weirdness. In fact, doctors believe that one of my idols, John Ritter (who was clearly hypermobile and died of an aortic dissection), had undiagnosed EDS.

                              The biggest problem at this point for EDS patients is a simple lack of knowledge about the syndrome, even within the medical community.


                              So, as for the neurosurgeon saying it's "fine" I wouldn't bet on that. The consensus amongst other medical professionals is that there is no way in hell he has looked at my images yet. Clearly, there must be an office mix up. Either that or I obviously do need another opinion because if someone can't spot dural ectasia amongst the other issues then clearly I do need to go elsewhere. But, as I said before I am very happy that your partner has been able to remain active. Maintaining muscle mass is key for EDSers.


                              Originally posted by mickeydoodle View Post
                              The majority of people with some form of Ehlers Danlos are minimally symptomatic- they have a higher incidence of joint laxity, some are more prone to dislocations, but it does not shorten life span, and in general is just an incidental finding. Some few will have spinal problems, but this is the minority. My partner has Ehlers-Danlos- he can pull his neck skin out 6", he has dislocated his acromio-clavicular joint, but he is a surgeon, rides bikes 30+ miles per week, plays league basketball, has climbed many mountains, hiked in the Amazon,Patagonia, Keyna, Alps, etc.

                              Maybe if the neurosurgeon says the spine is ok, it is, and the fatigue and other symptoms are something else.
                              "You are a child of the universe, no less than the trees and the stars;
                              you have a right to be here." ~ Desiderata by Max Ehrmann

                              Comment

                              • Original Poster

                                #16
                                This "incidential finding" of Ehlers Danlos just took one of my very good friends from me this week on 10/6/11. My friend Alexa was 22 years old and had EDS Hypermobile type. She had a wonderful spirit and I miss her already. My life is forever changed for the better having known her. There is a memorial page in her honor on Facebook if you search for Alexa Simmon's Memorial Page.

                                Here is what her father wrote: To all of Alexa's friends -- At 10PM tonight in Denver - we lost our wonderful daughter - Alexa will live on in our hearts for the rest of our lives -- she had a compassion for others that was unique and her life was ended far too quickly. The last 12 years of her life was an endless maze of emergency rooms and hospitals - and perhaps she will find herself finally at peace. I love you my little girl -- and I am so so sorry that I was not there without today as you slipped from our lives.
                                "You are a child of the universe, no less than the trees and the stars;
                                you have a right to be here." ~ Desiderata by Max Ehrmann

                                Comment


                                • #17
                                  I've been back in EDS research mode recently for a variety of reasons. I've seen a lot of doctors and PT people over the last nine months, and I've found a lot of them tend to dismiss it as "just hypermobility." Not all, mind you, but many. I turned up a recent article that distinguished between the hypermobility type and the Type 3 type by a test that shows either resistance or immunity to local anesthetic. So if local anesthetic doesn't work well on you, or if you have a really hard time getting numbed up at the dentist, there's good chance you have type 3. It also made me horrified to realize that my younger daughter probably was serious when she said that the local anesthetic didn't work when the dermatologist had to remove a small growth on her foot, since it's looking likely that she has EDS as well. Now I feel terrible. Another article found a correlation between fractures of the peripheral bones (fingers, toes) and EDS, although not other bones. So for those of us who have broken fingers after a light bump on their horse's neck after a jump, that might explain it. was the first thing they checked after that break.

                                  Comment


                                  • #18
                                    Originally posted by PalominoMorgan View Post
                                    The following are SOME symptoms of Ehlers-Danlos, but - to be clear - the presence of some of these symptoms is common in many people and does NOT necessarily mean that you have EDS, so don't worry.....

                                    xLoose, unstable joints that are prone to sprain, dislocation, subluxation (partial dislocation) and hyperextension (double jointedness)
                                    xEarly onset of osteoarthritis (sister is 41)
                                    xEasy bruising
                                    Dysautonomia typically accompanied by Valvular heart disease (such as mitral valve prolapse, which creates an increased risk for infective endocarditis during surgery, as well as possibly progressing to a life-threatening degree of severity of the prognosis of mitral valve prolapse)
                                    xChronic fatigue
                                    xFlat feet, often with later onset
                                    High and narrow palate, resulting in dental crowding
                                    xVulnerability to chest and sinus infections
                                    Fragile blood vessels resulting from cystic medial necrosis with tendency towards aneurysm (even abdominal aortic aneurysm)
                                    xVelvety-smooth skin which may be stretchy and is often translucent
                                    xAbnormal wound healing and scar formation
                                    xLow muscle tone and muscle weakness
                                    xMigraines and headaches, including postural headaches from spontaneous intracranial hypontension
                                    xMyalgia and Osteopenia (low bone density)
                                    Talipes equinovarus (club foot)
                                    Deformities of the spine, such as: Scoliosis (curvature of the spine), Kyphosis (a thoracic hump), Tethered spinal cord syndrome, Occipitoatlantoaxial hypermobility
                                    Arnold-Chiari malformation (brain disorder)
                                    Functional bowel disorders (functional gastritis, irritable bowel syndrome)
                                    Gastroparesis
                                    Dental issues, including early-onset periodontitis
                                    xSevere sleep disorders
                                    Nerve compression disorders (carpal tunnel syndrome, acroparesthesia, neuropathy)
                                    xVascular skin conditions: Raynaud's phenomenon, Livedo reticularis
                                    Blue sclera
                                    xxxxSwan neck deformity of the fingers
                                    Insensitivity to local anesthetics and painkillers
                                    Premature rupture of membranes during pregnancy
                                    xPlatelet aggregation failure (platelets do not clump together properly)
                                    Weak muscle tone (hypotonia) in infancy, which can delay the development of motor skills such as sitting, standing, and walking
                                    Arterial/intestinal/uterine fragility or rupture

                                    EDS patients have a very hard time being diagnosed for many reasons. The large scale of symptoms can look, from the outside, like a combination of many medical problems or, conversely, like plain old hypochondria. Some people, like me, are so afraid of being labeled "crazy" for talking about their symptoms that they spend their lives hiding the pain, the constant vomiting, the skin tears, etc. even when they can't hide the torn muscles, broken bones and dislocated joints et al.
                                    Drs told my mother that she was abusing my sister. My sister came in with a new tear to her chin every week.

                                    (the x's above are symptom's that I KNOW she has. Who know's what else is going on inside her. I have a few of them also)
                                    Draumr Hesta Farm
                                    "Wenn Du denkst es geht nicht mehr, kommt von irgendwo ein kleines Licht daher"
                                    Member of the COTH Ignorant Disrepectful F-bombs!*- 2Dogs Farm

                                    Comment

                                    • Original Poster

                                      #19
                                      Vali, hypermobility type IS an Ehlers Danlos type though per the conference rumblings this year there is going to be (yet another) reclassification next year in 2012. There are quite a few people that don't fall neatly in to the current types and people have been getting typed lately as "hypermobility type with classical features" or "classical with vascular features", etc. For example, I was told I was EDS Hypermobility type with easy bruising and atrophic scarring. I also won the "rare disease" lottery though and have WAY too many acronyms in my medical file now. That is not so uncommon, but even for an EDSer I am one of the outliers, though there is a subset of us that are popping up with the same triad of rare diseases. Maybe someday we'll be our own type.

                                      As for "benign hypermobility" or JHS (Joint Hypermobility Syndrome), there seems to be a push amongst leading EDS docs to get rid of the idea that it is benign. The thinking (from my understanding) is that it is just hypermobility that has not yet reeked havoc on the body. Mine did a fairly good job of holding itself together until after I had my daughter at 31. Dr. Rodney Grahame in the UK is fighting the fight there to try to eliminate the diagnosis of benign JHS and get folks to understand that JHS IS EDS Hypermobility type (or EDS 3).

                                      Nootka, if you do suspect you could have EDS I suggest your ask around to find a doc familiar with EDS. Knowing you have it can make a big difference in how you prepare for surgeries, approach procedures such as colonoscopies/getting scoped, take medications, have access to pain meds if needed, and connect lots of seemingly unrelated dots in your life. EDS also predisposes individuals to lots of secondary conditions and once you are a zebra it becomes easier for docs to accept that you might indeed have X, Y, AND Z going on instead of hearing "do you know what the odds of you have _____ are?" Not a perfect world of course, but when you find the right docs it does help.
                                      "You are a child of the universe, no less than the trees and the stars;
                                      you have a right to be here." ~ Desiderata by Max Ehrmann

                                      Comment

                                      • Original Poster

                                        #20
                                        Oh, and on a riding note... it also explains why my poor horse always had trouble going to the right... looking at MRI's of my abdominal cavity from last year it is no wonder my left hip always comes out of the socket and my right SI is always out. *eye roll* My horse is a saint. Riding is also a LOT easier when I know to check if my hips are actually IN the socket before mounting and to get off when they have worked themselves out. Oh, and my head always tilted to the left when showing b/c my head sits on my spine crooked per the CT. LOL. Yay for EDS.
                                        "You are a child of the universe, no less than the trees and the stars;
                                        you have a right to be here." ~ Desiderata by Max Ehrmann

                                        Comment

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