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| Date | May, Fri, 2011 |
| Location |  |
| Do You Have Chiari? | yes |
| If you have Chiari, what is your primary symptom? | was headaches, pain, syncope, etc. |
| Message | I was dx in 1998 w/ACM/SM I have had 3 decompression surgeries - 11/98 - found out I had hydrocephaleus 7/2000 & 6/2006 I'm in the process of finding out if I have vEDS. I wish everyone a pain-free day! Or at least hoping today will be a "good day"  |
| Date | May, Tue, 2011 |
| Location | |
| Do You Have Chiari? | Chiari And Syringomyelia |
| If you have Chiari, what is your primary symptom? | Headaches Upon Straining And Dizziness |
| Message | Hello to all. Glad to have found this site and the interesting format - very refreshing. I have been involved with www.asap.org since 1994 == when there was NOTHING on the internet. Now the information is OVERWHELMING = so many links to links to links. I learned you have to be very open minded and very careful about a lot of the info now on the net. I noticed the doctors who answer questions here are tops in their field and are on ASAP Medical Advisory Board. Very impressive. I will visit here often. Thank You. |
| Date | May, Tue, 2011 |
| Location | |
| Do You Have Chiari? | Yes |
| If you have Chiari, what is your primary symptom? | Headache |
| Message | I'm glad there is a place for us to go that isn't just medical jargon. Thank you. |
| Date | Mar, Tue, 2011 |
| Location | |
| Do You Have Chiari? | my 7 year old daughter does |
| If you have Chiari, what is your primary symptom? | short stature/ MRI shows 1 cm Chiari malformation |
| Message | Hi, through MRI just found out my 7 year old daughter has CM - just want to be added to any email lists you have so I can get more info. Thanks. She has also been diagnosed hypopit - short stature, lack of IGF-1 and some low thyroid function. Could these be related? |
| Date | Feb, Fri, 2011 |
| Location | |
| Do You Have Chiari? | Yes |
| If you have Chiari, what is your primary symptom? | chronic fatigue, dizziness, eyesight, headaches |
| Message | Am having surgery in March anyone know a good place to stay besides The Variety House. Any place closest to the hospital? |
| Date | Feb, Tue, 2011 |
| Location | |
| Do You Have Chiari? | yes and SM |
| If you have Chiari, what is your primary symptom? | Headach and shoulder pain |
| Message | Thank you for this site it helped me remember all that I am capable of and all that I need others for. Dr. Heiss is the most wonderful doctor. He has amazing bed side manner and has worked many hours among the other doctors to help me. I am so grateful for his time and for the time that has been put into this site. Thank you Sincerely, Nichole Lowe |
| Date | Feb, Thu, 2011 |
| Location | |
| Do You Have Chiari? | Yes |
| If you have Chiari, what is your primary symptom? | headaches/neck aches |
| Message | I am very much involved with raising Chiari awareness. My friend Tonya and I have started the Chiari Crusaders of SW MI - we meet the second Saturday of every month at Zekes 109 S. Front St. Dowagiac, MI 49047. I also do one of the Conquer Chiari Walk Across America walks in Michigan. This year will be my third year to host a walk. Because of the walk in 2009, I have met many others in my community that have chiari and have made some life long friends that I can talk to and totally "get" me. I no longer feel isolated and alone. My ultimate goal is to get Chiari on a tv talk show where everyone can see that we look healthy on the outside while we are in so much pain on the inside. |
| Date | Feb, Thu, 2011 |
| Location | |
| Do You Have Chiari? | Yes |
| If you have Chiari, what is your primary symptom? | headaches/neck aches |
| Message | I am very much involved with raising Chiari awareness. My friend Tonya and I have started the Chiari Crusaders of SW MI - we meet the second Saturday of every month at Zekes 109 S. Front St. Dowagiac, MI 49047. I also do one of the Conquer Chiari Walk Across America walks in Michigan. This year will be my third year to host a walk. Because of the walk in 2009, I have met many others in my community that have chiari and have made some life long friends that I can talk to and totally "get" me. I no longer feel isolated and alone. My ultimate goal is to get Chiari on a tv talk show where everyone can see that we look healthy on the outside while we are in so much pain on the inside. |
| Date | Feb, Wed, 2011 |
| Location |  |
| If you have Chiari, what is your primary symptom? | Chiari Malformation which was causing a syringomye |
| Message | Chiari Malformation which was causing a syringomyelia |
| Date | Jan, Fri, 2011 |
| Location | |
| Do You Have Chiari? | Yes |
| If you have Chiari, what is your primary symptom? | Headaches, dizziness, numbness in leg |
| Message | After more than 10 years of suffering with horrific migraines, dizziness, numbness in my hands and on my right side I was diagnosed with Chiari after I passed out. At the time I was being treated for Vertigo. I had decompression surgery in May 2009. Although the headaches have lessened, the numbness is slowly returning, as is the difficulty swallowing. I have alot of pain on the back left side of my head. The neurosurgeon that did my surgery says I have nerve damage. He won't say that it happened during surgery but that it may have. I didn't have this prior to the surgery. He now wants to do a nerve block. I am not convinced that this is what I want to do. Last week my son passed out and because of my history they did an MRI and found that he also has Chiari. We will know more after his visit with the neurosurgeon. I am wondering how others have done post surgery. |
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