Sign Guestbook Back to Chiari Connection International Report abuse
| Date | Aug, Fri, 2010 |
| Location |  |
| Do You Have Chiari? | Yes |
| If you have Chiari, what is your primary symptom? | Pain/numbness |
| Message | Surgery has kept my symptoms at bay for 10 years. But it appears as I age things are changing again...we shall see what the future holds. A few brief notes from my journey: Life can be lived "normally" for long stretches. You are not alone-EVER, no matter how "rare" you feel. Educate yourself, then educate your physician. Advocate for yourself. Faith helps, but sometimes simply taking care of yourself helps more than all the faith and treatment. If you haven't read the "Spoon Theory," find a copy! Blessings to you all! Sherry |
| Date | Aug, Fri, 2010 |
| Location | |
| Do You Have Chiari? | yes |
| If you have Chiari, what is your primary symptom? | headache, neck and shoulder pain |
| Message | I have Chiari with hydrocephalus. Also a kinked brainstem. Found the Chiari in 1991. Have had two decompressions and have a VP shunt. Numerous shunt revisions. After second decompression blood clot developed on brain stem causing double vision, balance problems, depth perception problems. Still have horrible headaches daily. |
| Date | Aug, Fri, 2010 |
| Location | |
| Do You Have Chiari? | Yep! |
| If you have Chiari, what is your primary symptom? | Too many! |
| Message | I had a constellation of symptoms. I was decompressed in 1998 and life is good--not perfect--but quite tolerable. Finding a true Chiari expert is important. Check for doctors who are medical board members of Chiari-related organizations for starters. |
| Date | Aug, Thu, 2010 |
| Location | |
| Do You Have Chiari? | yes |
| If you have Chiari, what is your primary symptom? | Severe head pain numbness tingling memory |
| Message | I have an 11mm herniation, retrofluxed odontoid process, cervical and formainal stenosis, spinal hemangiomas, my loradic curve is not proper, small posterior fossa, possible Hypermoblie EDS ive been diagnosed 5 yrs and have not had surgery |
| Date | Aug, Mon, 2010 |
| Location | |
| Do You Have Chiari? | yes |
| If you have Chiari, what is your primary symptom? | H/A's and pain |
| Message | Since joining in with others living with Chiari and the other "fun goodies" that come with it my life has become more understandable. I remember how lonely and isolated I felt before, sometimes it felt worse then the stuff that comes with the disease. I also have IH (Intracranial Hypertension) and have a LP shunt that helps (mostly) with the pressure. I also had decomp surgery, it helped for a short while. I am now in the process of trying to find a good Dr to fix the mess of the last one. No matter what may come, we are so so very BLESSED and must never forget that!  |
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