tag:blogger.com,1999:blog-4117022934908081512.post1719180323341693267..comments2018-01-09T15:59:29.822-08:00Comments on Zipperheads for Chiari: When having Arnold Chiari Malformation surgeryHeatherhttp://www.blogger.com/profile/06322896827980743141noreply@blogger.comBlogger14125tag:blogger.com,1999:blog-4117022934908081512.post-12199040567348436152015-10-18T10:25:49.088-07:002015-10-18T10:25:49.088-07:00Thank you heather, I am currently pre op as they h...Thank you heather, I am currently pre op as they have cancelled on me twice, reading your words had encouraged me to stay positive and relax. Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-4117022934908081512.post-52959372782702249422014-11-03T21:02:19.110-08:002014-11-03T21:02:19.110-08:00I have been reading everyone's comments and fe...I have been reading everyone's comments and feel somewhat scared, but my pain has been going on for years after a diving accident. I have been to every doctor, done every test, and still no answers. An MRI was performed many times, but Dec of 2012, they found an arachnoid cyst and just to confirm, had another MRI done a week later to find it was still there. Nothing was ever mentioned before during all of the other exams or CT's, or MRI's. I deal with chronic headaches everyday, migraines once a week, neck, muscle pain in shoulders, pain and throbbing at the base of my skull that is excruciating. I can't work. I can't bend over to tie my shoes or pick something up off of the floor. I can't look at the stars. I have vision problems, low frequency humming or vibrating sensations in both ears. I saw my neurologist on 10/29/2014 and he diagnosed me with Arnold-Chiari cerebellopontine angle arachnoid cyst. He recommended surgery because all of the medications that I am on are not working anymore. The only problem is, we have one income, and the surgeon is in NY. I live on the gulf in Alabama. Will my insurance pay out of state? How long will I be in the hospital? How long will I need help or a caregiver? The kicker is that I found some old MRI films of my brain and cervical, and they actually show where the Chiari is descending into my spinal column. These were done in 2005, when I had the face first collision with the bottom of a pool. I am trying to file for disability, but I am wondering if this has been going on since that MRI was taken, why didn't someone say something then. I am not a money hungry person, but I strongly feel that if I have been dealing with this that long, then I should get that info to my disability worker and sue the company/doctor that did that x-ray and said it was normal. Am I crazy?Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-4117022934908081512.post-53437774404588699282013-09-08T17:56:11.983-07:002013-09-08T17:56:11.983-07:00Hello my name is Amber. I found out that I have ch...Hello my name is Amber. I found out that I have chiari malformation in November 2012. None of my doctors seemed to concerned, but I was in so much pain and couldn't concentrate. Things seemed to be getting worse everyday. In June 2013 my NS said it would be best to have surgery to help my situation. On August 20, 2013 I had surgery. The same day after surgery the doctor ordered me to get a chest-xray because I was having trouble breathing. During the process of getting the fray the fray tech hit me in the back of the head with the fray board. That was the most painful thing I have ever gone through. The next day my husband pointed out to the nurse that one of my eyes would wonder. Then I noticed that I had really bad double vision and that my hands were numb. The doctor told me that it would take time for everything to heal. It has been 17 days since my surgery and nothing is getting better. My numbness is now all over my whole body and my double vision has gotten so bad that I have to wear an eye patch to avoid getting sick or getting a headache. My concern is that my problems are not from the surgery but from being struck in the head hours after surgery. My doctor didn't tell me what to or not to expect after surgery so I dint know if this is normal. Heather thank you for sharing. Everything you said about emotions before surgery is correct. I didn't know what was wrong with me because I w o Ulf just start crying out of the blue because I was scared and felt guilty that I was willing to go through this surgery not knowing if I was going to make it or if I was going to have savere complications. I was worried that I would deprive my kids from growing up with a mom. There was so much going through my head in such a short time I had know way to work through it all. Thank you everyone for sharing your stories. I now know that I am not so alone.Ambernoreply@blogger.comtag:blogger.com,1999:blog-4117022934908081512.post-45735798114285808112013-08-24T10:16:45.964-07:002013-08-24T10:16:45.964-07:00Does anyone know of any research on how chronic st...Does anyone know of any research on how chronic stress of high blood pressure speeds up the onset of chiari symptoms? I had a stressful event February 2013 that caused my blood pressure to go up and since then I began experience massive head aches, my hands shake, I wake up with numb arms, and I can't feel certain parts of my arms and legs. I just found out that my cerebellum is 13mm downward and I have a massive syrinx. I have seen several neurosurgeons this summer and no one will touch it. I have an appointment next week at a University's hospital to exam my condition. I appreciate any feedback as I'm trying desperately to learn about this condition.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-4117022934908081512.post-37998602716904025302013-07-19T03:26:52.137-07:002013-07-19T03:26:52.137-07:00I had Chiari surgery at 54 years old in November 2...I had Chiari surgery at 54 years old in November 2012. Prior to surgery my symptoms were dreadful. Decompression surgery was successful. Recovery was very difficult. After surgery, I've gone from hardly being able to put one foot in front of the other, extreme nausea for the first week to now being able to lead a reasonably normal life. I can drive well. I still have residual nerve pain in arms & legs, helped with Lyrica & I manage on Panadol. My head seems to still get an irritated nerve feeling with too much bumping around & I still find it hard to get comfortable for sleeping. I've come a long way from where I was before surgery. For me surgery was worth it. My surgeon in Newcastle NSW Australia, was Dr Ferch. He does a decompression surgery every 2-3 months. Cheryl50https://www.blogger.com/profile/10702450916164464042noreply@blogger.comtag:blogger.com,1999:blog-4117022934908081512.post-78305484456549930562013-06-22T16:20:38.648-07:002013-06-22T16:20:38.648-07:00Heather you have a big heart...keep being that str...Heather you have a big heart...keep being that strong person...hope you have better days than bad...I had my first decompression surgery on 10-10-13. I felt better right away dispite the pain I had when I woke up from the surgery. I went back to work 4 weeks later (now I realized that was crazy) I have scar tissue that is reducng the CSF flow... my cerebellum is protruding against the craniectomy and my brainstem is herniated.......I am miserable with all of my symptoms...my life has never been the same...from reading your comment I feel lucky I am able to drive (short distances). I'm having my second surgery on July 12th and I'm hoping I'll open my eyes again after the surgery. I wish one surgery would fix it all and all of us could carry on with our normal lives. We can only try to stay strong and live what we can.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-4117022934908081512.post-68535886224135309602013-05-31T22:40:37.143-07:002013-05-31T22:40:37.143-07:00Thank you so much for writing this I had surgery S...Thank you so much for writing this I had surgery Sept,2010 and I to am not able to go back to work or drive and have more bad days than good but I am thankful I am still here to see my kids graduate and Grandkids grow up and my husband is right by me every step of the way.And have hopes of having more good days then bad someday soon !prayers,hope and strength !:)Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-4117022934908081512.post-9380413873929470182013-04-16T20:22:54.765-07:002013-04-16T20:22:54.765-07:00I am sitting in my wife's hospital room, our 1...I am sitting in my wife's hospital room, our 15th day our since her decompression, which included removing the knuckles on C1 and C2 in her spine. She has had terrible issues with the fluid building up around her incision, and they've placed a lumbar drain twice. The doctor has said if the fluid doesn't drain sufficiently, he will go in and place a permanent drain from the spine into the abdomen. I am grateful she has had the surgery, but we honestly didn't anticipate all of the setbacks she has faced. She is 32. Thanks for sharing your journey.Benny (Not Hinn) Williamshttps://www.blogger.com/profile/15547093382750724768noreply@blogger.comtag:blogger.com,1999:blog-4117022934908081512.post-32574955976977900382013-01-21T16:50:11.954-08:002013-01-21T16:50:11.954-08:00I'd be interested to know, too, whether the VA...I'd be interested to know, too, whether the VA has acknowledged an Agent Orange-Chiari link, as my father was exposed to the former, and I've been decompressed for the later. Ehttps://www.blogger.com/profile/11721929384691743166noreply@blogger.comtag:blogger.com,1999:blog-4117022934908081512.post-56378628562816824542013-01-16T13:23:49.601-08:002013-01-16T13:23:49.601-08:00I was recently diagnosed with Chiari I 12/10/12. M...I was recently diagnosed with Chiari I 12/10/12. My father was exposed to Agent Orange as well. He died from non-hodgekins lymphoma 2/10/11. I had my decompression surgery 1/7/13 and am at home recovering. Has the VA acknowledged that your Chiari is directly related to your father's exposure? I also have a daughter with achondroplasia. She too has had decompression surgery, ETV, and finally a VP shunt. She will need another decompression surgery in the near future. She is only 2.5 years old. I suspect that my other 3 children also have Chiari I. Prior to my surgery I put in a claim for compensation with the VA for myself AND my daughter. I wanted it known how much Agent Orange exposure has affected this family. And maybe I won't ever see anything come of it...but I did it for my daughter in hopes that in her lifetime the government will recognize that exposure has gone as far as grandchildren at this point. Thanks for reading!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-4117022934908081512.post-89143706440943628282012-11-10T06:50:39.293-08:002012-11-10T06:50:39.293-08:00My husband is suffering terribly with Chairi. his ...My husband is suffering terribly with Chairi. his pain is only really strong narcotics, and I have RSD with disability so I share with him even though its against the law and if my pain doc ever found out I'd lose him. my disorder is also rare and the pain rivals cancer. I have no idea what his feels like, we were under so much stress we separated. I miss him terribly but he felt it was right so I am miserable without him. I'm trying to get him funding or Medicare, but it's like watching a pot trying to boil. anyone have any ideas? <br />Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-4117022934908081512.post-25840325226276367322012-07-17T19:01:20.805-07:002012-07-17T19:01:20.805-07:00Hey Heather, I was diagnosed when I was 14, and wa...Hey Heather, I was diagnosed when I was 14, and was thrown into corrective surgery when I had just turned 15, and now, at 21, I live a happy and normal life- free of my symptoms! I love your blog, and please continue to uplift fellow Chiarians! Everything you wrote was so spot on! Thank you!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-4117022934908081512.post-87782161725675995312012-07-12T12:29:14.233-07:002012-07-12T12:29:14.233-07:00Thank you Heahter. You are very courageous.
~ Chr...Thank you Heahter. You are very courageous.<br />~ Christi<br />In PennsylvaniaAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-4117022934908081512.post-33396919528139444982012-07-09T11:08:10.098-07:002012-07-09T11:08:10.098-07:00Thank you for your insight. I am the mother of a 1...Thank you for your insight. I am the mother of a 19 year old Chiarian who was diagnosed six weeks ago and will have surgery tomorrow. I appreciate your advice to the caregivers. This is a new road for me too. <br /><br />God bless you and may you have more good days than bad days.<br /><br />Pam <br />In Tennesseejosgirlhttps://www.blogger.com/profile/08743978574048515776noreply@blogger.com