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| Date | Dec, Sun, 2011 |
| Location |  |
| Do You Have Chiari? | Yes, as well as several comorbid diseases |
| If you have Chiari, what is your primary symptom? | Too many to decide |
| Message | I was diagnosed with CMI on April 1, 2009, based on a thorough neurological examination, as well as clear MRI findings. It took me at least one year to get correct diagnoses. I traveled with my husband and parents across the country, mostly the Midwest, until I finally found the best, most brilliant and compassionate, world renowned neurosurgeon at The Chiari Institute named Dr. Paolo Bolognese who specializes in Chiari and related disorders. It's been quite a struggle! But, I try my hardest to be positive as often as I can. Dr. B performed a posterior fossa decompression on 5/11/10. Then, I had to undergo a Section of the Filum Terminale for my Tethered Spinal Cord on 8/11/10. I had a year to a year and a half of a really long, and difficult painful recovery. I have: CMI Malformation, Basilar Invagination, which I must have another brain surgery, unfortunately, a cranial cervical fusion soon, Tethered Spinal Cord, Neurogenic bladder w/ self catheterization daily, Ehlers Danlos Type III Hypermobility type, POTS~Postural Orthostatic Tachycardia Syndrome, Osteopenia, Sleep Apnea (Obstructive & Central), and Cranial Cervical Instability. Plus, more than 100 symptoms can occur at anytime, intermittently, anywhere! It's a very rare set of disorders now, and more and more information regarding these rare disorders, which have no cure! We need to spread the word more to the medical community, and the general public!! Let's fight for a cure!!!    |
| Date | Nov, Tue, 2011 |
| Location |  |
| Do You Have Chiari? | Yes |
| If you have Chiari, what is your primary symptom? | Too many to list |
| Message |  I have had chiari since birth BUT was not diagnosed until I was 27 (1990). I am of course now 48. operation 1990 (Urgent) some symptoms lessen. the pain is gone but the maledy ligners on. Regards, Mitchell |
| Date | Nov, Wed, 2011 |
| Location | |
| Do You Have Chiari? | Yes |
| If you have Chiari, what is your primary symptom? | Severe headaches |
| Message | I have been dealing with chronic pain, fatigue, severe headaches, face numbness, trouble swallowing and many more symptoms for 10 + years and was finally diagnosed with fibromyalgia but never accepted the diagnosis and was referred to a pain management doctor who did an MRI of my brain and found the chiari malformation. When I did research on this I found that every symptom I had been telling my doctors for years matched 100%. I am now on the journey of seeing new neurologist and then finding a doctor who specializes in this. Wish me luck!! If anyone has information about a specialist around the SC area please let me know. |
| Date | Nov, Tue, 2011 |
| Location | |
| Do You Have Chiari? | yes |
| If you have Chiari, what is your primary symptom? | Pain , pain, pain! And now seizures everyday. |
| Message | I just found out I have to have surgery in Dec. I am confused and scared and have no one to talk to.  If there is someone out there reading these please let me know. Everybody I know thinks my Chiari is just something I made up. They don't even care when I said I have to have decompression surgery. Hopefully things will get better soon. I have to reassure my 13 year old daughter that I'm going to be alright, even though I'm not sure myself. She is scared more than I am and I don't know how to ease her mind without making promises I might not be able to keep. Any suggestions??? Thanks to all for listening!  |
| Date | Oct, Tue, 2011 |
| Location | |
| Do You Have Chiari? | No |
| Message | My name is Lindsey Kroll, I am the President, Founder of Enable Your Care Patient Advocacy & Patient Care Coordination. Your company/organization was mentioned at a charity event I attended this past weekend in Arizona. What an amazing cause and I am humbled by the wonderful work you all have done. May the days ahead be bright for your patients and we wish you all the luck in your journey to communicating awareness around Chiari! Be well, Lindsey Kroll |
| Date | Sep, Tue, 2011 |
| Location | |
| Do You Have Chiari? | YES |
| If you have Chiari, what is your primary symptom? | ALL |
| Message | I recently let everyone know that I was recently (an early few months ago) diagnosed with Chiari 1 Malformation. And my e-mail has changed for the time being... It was [email protected] but, I locked myself out (or someone figured out my password). But you can reach me on my boyfriend, Curtis' e-mail. When you leave an e-mail on his account that it is for me. I do have a few questions: (1) Why does so much hurt? (2) Why does your eye site change (which for me, it scares me)? (3) What medication seems to work best to keep you/me out of pain (sleep through the night, crazy which hurtful back pain, burning in my neck, chocking, ect.)? (4) My doctor found a place in Florida that will start seeing me, but I DO NOT have the money the research hospital/or hospital in general, I called to make the appointment, but 2 grand is allot of money...How do you do this: see doctors, drive to the only place close to your home, to get help BUT HOW DOES ANYONE AFFORD TO GO, cause I have no insurance/medicaid at all??? And YES, I have tried and cannot find the money or anyone to take me for free. (5) What do I do financially? (6) And what medication helps the best?....Thank you, Chasitie Turner-Skipper |
| Date | Sep, Mon, 2011 |
| Location | |
| Do You Have Chiari? | yes and my son |
| If you have Chiari, what is your primary symptom? | double vision, very bad neck and shoulder pain |
| Message | We all have had a tough road to a better quality of life and our personal choices in how to deal with the systems of our Chiari (and related systems). Personally it took two years for doc's to pick up on mine! Boy is was crazy and emotional! Very happy to be alive and have two wonderful children (my son has a comfirmed Chiari I) and we enjoy our lives with in Chiari boundaries! Understand what we can do and having fun together is been the blessing! I've been very blessed to have the great support of the doctors, nurses and personal Chiari friends. Take hold of your life and get ready to understand it's a wild ride with a Chiari and related issues! Learn, understand and live it! This bad day shall pass and we get to try again tomorrow after a good rest! Anyone can call me any time for support and or just someone to vent to, I think I might have already been there and more!  Just understand this is a life style change and once you live it, you'll be much happier! (And less pain) Bea |
| Date | Sep, Sat, 2011 |
| Location | |
| Do You Have Chiari? | Yes |
| If you have Chiari, what is your primary symptom? | All symptoms |
| Message | I forgot to add.... Where and how do I find some place, doctor anywhere to help? I do not know who or what, where, how, when to contact anyone and I am from Alabama. Thank you |
| Date | Sep, Sat, 2011 |
| Location | |
| Do You Have Chiari? | Yes- scared I have % children |
| If you have Chiari, what is your primary symptom? | all symptoms but i have seizures, noone knows why |
| Message | I have Chiari 1 Malformation and I have all the symptoms. The medication does not help any more with pain or anxiety. I am scared for my children. I have had so many test and it was always over looked until I had a seizure and asked to be taken to a different hospital. And now I cannot afford to get help. What do I do? The pain and headaches and eye site and all of it has really take a lot out of me not only me but my children has to see mommy this way, too. They always are right by my side always worried about mommy. We do not deserve this. My children are my strength but they just do not know how much mommy is really sick. What do I do? |
| Date | Sep, Tue, 2011 |
| Location | |
| Do You Have Chiari? | Yes |
| If you have Chiari, what is your primary symptom? | Headahce/Trouble Swallowing |
| Message | Looking to meet and find information about Chiari from others who have been suffering and are still suffering. Just looking for a support group. People I can talk to and learn from and hopefully get some help and maybe others along the way.  |
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