Laurie Posted October 12, 2007 Report Share Posted October 12, 2007 Hello Everyone! This is my first post on this site. I was diagnosed with POTS last year in Sept. Shortly after that dx I was dx'd with a syrinx (a cyst in my spinal cord). Then came the Chiari, Tethered cord syndrome, and Ehlers Danlos Syndrome (EDS) dx's. I had surgery at The Chiari Institute in NY in June to release the tethered spinal cord, since then my POTS symptoms have gotten worse. I know my case is complicated but the great doctors at The Chiari Institute have found a link between these disorders, so I am thinking I cannot be alone in this. I am hoping to find someone on here that has a similiar experience, it is tough feeling like I am alone with these conditions. The doctors at The Chiari Institute are now recommending I have cranial-cervical fusion. I have created a blog for my family and friends to help them understand my conditions, I will post the link here for anyone who is interested. http://laurieyeh.blogspot.com/Laurie Quote Link to comment Share on other sites More sharing options...
lloppyllama Posted October 12, 2007 Report Share Posted October 12, 2007 Hi Laurie! Welcome!I myself only have the POTS diagnosis out of your list, however there are many others here with EDS. Also there are quite a few with a chiari malformation too.I hope that your blog will help your family understand, as it can be hard going through all this crud when you feel so alone. Just remember that your not and that we are all here for you when you need to know you have some friends that actually can say "I understand" and actually mean it. Again, welcome, I'm glad you found us, and I hope if you have surgery it goes well for you. Good luck!Have a wonderful night!Mary Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted October 12, 2007 Report Share Posted October 12, 2007 Welcome Laurie!I am sorry you have to deal with all these health challenges.It is great that your family and friends want to support and understand what you are going through.It has been very validating to come here and share with those who struggle with what we experience.I am confident you will find that here, you are family.best regards,tearose Quote Link to comment Share on other sites More sharing options...
kjdube Posted October 12, 2007 Report Share Posted October 12, 2007 If you search on the web, there are many who have been diagnosed with chiari, POTS and EDS, take a look on the various chiari support group sites, theres tons of discussion of this including experiences of those who participated in various research for the conditions also. On this list, I haven't seen alot of members with chiari, although I suspect some may have it on this board but not diagnosed. POTS is commonly found with chiari, also EDS. Quote Link to comment Share on other sites More sharing options...
Mrs. Burschman Posted October 12, 2007 Report Share Posted October 12, 2007 Welcome to the board, Laurie! I'm glad you found us. The people here are so helpful and kind!Amy Quote Link to comment Share on other sites More sharing options...
Maxine Posted October 12, 2007 Report Share Posted October 12, 2007 Welcome to the forum! You will find people here who will offer compassion, understanding, and support. As you can see in my signature line I have simular health issues to yours. I have gotton several opinions over the years, and have avoided surgery so far. I did have cervical spine surgery, but this was before I found out about the EDS. You definately want to have a surgeon that is experienced with both EDS and cervical/cranial instabiltity, to avoid complications which can often happen on EDS patients. Fortunately the surgeon who did my cervical spine surgery did a fusion with the support of a titanium plate because two levels were done. C5,6, and 7 areas of my neck have healed fine, but unfortunately the areas above and below it have become more unstable. The surgeon did not know I had EDS, as I was not diagnosed until 2 years after surgery.TCI is one of the opinions I had, but they are out of network for us, and I found another surgeon experienced with instability, and who is very knowledgable about EDS. In fact he was recommended by my EDS specialist.I saw your web page, and it looks like you ave a very supportive husband.---- I wish you the best, and hope you can avoid the complications that often come with EDS. I'll bet there are days when it feels like your spine is falling apart. Or how about those times when your neck moves sideways horizonally-------------------- Just a fraction of an inch scares the heck out of me-- Only people who have this can relate. Can you sleep on your side? I find that I can't because of slippage in the cervical/cranial area, and then I wake up with a headache, ear fullness, and feel bad the rest of the day.I hope you get the best of care, and can avoid ignorant and rude medical professionals.Take care of yourself.Maxine :0) Quote Link to comment Share on other sites More sharing options...
JenniferInOhio Posted October 12, 2007 Report Share Posted October 12, 2007 Hi!! Quote Link to comment Share on other sites More sharing options...
pastordari Posted October 12, 2007 Report Share Posted October 12, 2007 Welcome to the family! Quote Link to comment Share on other sites More sharing options...
ajw4790 Posted October 12, 2007 Report Share Posted October 12, 2007 Welcome!!! I am new too!!! It sounds like you have been through a lot! Good luck with everything!!! Welcome! I know the board has helped me, hopefully if you ever need anything it can help you as well! Quote Link to comment Share on other sites More sharing options...
stellakitty Posted October 12, 2007 Report Share Posted October 12, 2007 Hi...I too have Dysaut., Chiari, EDS, and instability issues. I'm waiting for a CCF... What do you think of TCI? My mom is going to take me up there as I was just dumped by another nsg due to being over his head (he said TCI the 1st I was up there...). But it will take alot of work to get them "in network". Also with the tethered cord, what kind of sx do you experience? It hasn't been brought up with me, but I wonder if I have it. I'm doing cervical traction daily and when I do the traction I get a feeling from my waist down that everything is "asleep" and being pulled. I also have an ASO brace for severe drop foot (presumably due to the CCI) and I can't bear to wear it due to the spine pain it causes. When I sit I get a sharp pain in my tail bone. And I NEVER pee even though I drink copious amounts of water. I did the TCI questionnare and answered yes to almost everything but IDK. Did you get any relief from the your chiari sx from the TCS surgery?Have you done Invasive Cervical Traction yet? Or are you waiting until the CCF?Also if you didn't know WACMA and Chiari Connection International both have Yahoo email lists... You can get daily digests to see what's up with other chiarians. But I think I've seen you on there...Alexa Quote Link to comment Share on other sites More sharing options...
DSM3KIDZ Posted October 13, 2007 Report Share Posted October 13, 2007 I just wanted to say hi and welcome you to the board. I an also a mother of 3 and read your log and feeling compassion for you. I don't have chari or EDS but alot of other health crap going on.I hope you meet alot of people here.Dayna Quote Link to comment Share on other sites More sharing options...
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