# What's New With You? **URL:** https://forum.chiarisupport.org/c/general/whats-new-with-you/13.md [Latest](https://forum.chiarisupport.org/latest.md) · [Categories](https://forum.chiarisupport.org/categories.md) · [Tags](https://forum.chiarisupport.org/tags.md) --- ## [About the What's New With You? category](https://forum.chiarisupport.org/t/about-the-whats-new-with-you-category/19)
**Author:** [@system](https://forum.chiarisupport.org/u/system)\ **Replies:** 0\ **Last updated:** [August 18, 2016, 8:07pm UTC](https://forum.chiarisupport.org/t/about-the-whats-new-with-you-category/19 "2016-08-18T20:07:05Z")
A place to reconnect with community and share personal and health updates. --- ## [Thank you! and, Driving?](https://forum.chiarisupport.org/t/thank-you-and-driving/14353)
**Author:** [@JoyfullyHis](https://forum.chiarisupport.org/u/JoyfullyHis)\ **Replies:** 4\ **Last updated:** [November 16, 2023, 2:38pm UTC](https://forum.chiarisupport.org/t/thank-you-and-driving/14353 "2023-11-16T14:38:35Z")
Hi guys :blush: Short story here :laughing: If you’re just looking for the question, feel free to scroll down- it is at the end of my tale, hehe! First of all, I am so thankful for this website and all the knowledge and… --- ## [Do I have a Retroflexed Odontoid and can this mimic a CSF leak?](https://forum.chiarisupport.org/t/do-i-have-a-retroflexed-odontoid-and-can-this-mimic-a-csf-leak/14380)
**Author:** [@YotaF](https://forum.chiarisupport.org/u/YotaF)\ **Replies:** 3\ **Last updated:** [April 20, 2022, 8:43am UTC](https://forum.chiarisupport.org/t/do-i-have-a-retroflexed-odontoid-and-can-this-mimic-a-csf-leak/14380 "2022-04-20T08:43:38Z")
I had a bout of whiplash in 2011 and since then I developed a hissing noise in my head that would go away completely if I laid flat for ten minutes. Over time, it got worse and took longer periods of time lying down for … --- ## [Great Scott! I've done it! I've found the perfect "pillow"!](https://forum.chiarisupport.org/t/great-scott-ive-done-it-ive-found-the-perfect-pillow/12024)
**Author:** [@Geo](https://forum.chiarisupport.org/u/Geo)\ **Replies:** 3\ **Last updated:** [March 1, 2022, 8:04am UTC](https://forum.chiarisupport.org/t/great-scott-ive-done-it-ive-found-the-perfect-pillow/12024 "2022-03-01T08:04:34Z")
So I’ve been on the hunt for a good pillow even before my surgery. Everything felt like 8 might as well be resting my head on a rock. Then I remembered. Last year, I found this brand of plushies called squishmallow. I sa… --- ## [Four Years after my surgery](https://forum.chiarisupport.org/t/four-years-after-my-surgery/14229)
**Author:** [@Jennasweb](https://forum.chiarisupport.org/u/Jennasweb)\ **Replies:** 1\ **Last updated:** [November 1, 2021, 5:44am UTC](https://forum.chiarisupport.org/t/four-years-after-my-surgery/14229 "2021-11-01T05:44:55Z")
You know, I read in so many places that symptoms returned with several patients after three years post-op. I was waiting this past year. Nothing. I am grateful but I am aware that it could come back. I take this and run … --- ## [Could borderline Chiari I cause symptoms?](https://forum.chiarisupport.org/t/could-borderline-chiari-i-cause-symptoms/14205)
**Author:** [@MandyFNP](https://forum.chiarisupport.org/u/MandyFNP)\ **Replies:** 3\ **Last updated:** [October 5, 2021, 11:25pm UTC](https://forum.chiarisupport.org/t/could-borderline-chiari-i-cause-symptoms/14205 "2021-10-05T23:25:57Z")
Hello, I am a 34 y/o female. I am just needing to know if I should pursue care for what was diagnosed on a MRI as “borderline Arnold Chiari I malformation.” For the last few years I have experienced almost chronic headac… --- ## [CSF "Capsule" below cerebellum](https://forum.chiarisupport.org/t/csf-capsule-below-cerebellum/13932)
**Author:** [@Lindsbud](https://forum.chiarisupport.org/u/Lindsbud)\ **Replies:** 5\ **Last updated:** [February 10, 2021, 1:54pm UTC](https://forum.chiarisupport.org/t/csf-capsule-below-cerebellum/13932 "2021-02-10T13:54:55Z")
It was a fight to get my diagnosis, but once I did I received a decompression surgery. I started to feel my symptoms to back off more than I thought would. 2 Months after surgery I got a CSF leak from one of the sutures … --- ## [Good Grief 😔 having a really hard time](https://forum.chiarisupport.org/t/good-grief-having-a-really-hard-time/11971)
**Author:** [@Rebecca\_M](https://forum.chiarisupport.org/u/Rebecca_M)\ **Replies:** 5\ **Last updated:** [November 23, 2020, 11:57am UTC](https://forum.chiarisupport.org/t/good-grief-having-a-really-hard-time/11971 "2020-11-23T11:57:12Z")
This Pain in my neck and head is horrible I can barely lift my head, idk what to do, my Primary care Dr doesn’t think chiari is painful, she’s not any help, it’s hard being in this much pain and needing some kind of trea… --- ## [Had second opinion](https://forum.chiarisupport.org/t/had-second-opinion/13320)
**Author:** [@nwusa](https://forum.chiarisupport.org/u/nwusa)\ **Replies:** 3\ **Last updated:** [April 2, 2020, 11:35am UTC](https://forum.chiarisupport.org/t/had-second-opinion/13320 "2020-04-02T11:35:30Z")
Hi all, so after waiting for months to get my nerve up and ask for a second opinion, my in clinic appointment is changed to a phone appointment. New NS starts right off telling me how he read my chart, talked to the 1st … --- ## [Another MRI result](https://forum.chiarisupport.org/t/another-mri-result/12860)
**Author:** [@nwusa](https://forum.chiarisupport.org/u/nwusa)\ **Replies:** 6\ **Last updated:** [March 7, 2020, 12:10pm UTC](https://forum.chiarisupport.org/t/another-mri-result/12860 "2020-03-07T12:10:35Z")
Hi all, I had a CINE MRI done after a year with these headaches. It showed that “Cine CSF flow imaging through the foramen magnum demonstrates decreased and turbulent CSF flow just inferior to the tonsils.” Is that dange… --- ## [Follow up visit](https://forum.chiarisupport.org/t/follow-up-visit/5148)
**Author:** [@Tiffany\_Sees](https://forum.chiarisupport.org/u/Tiffany_Sees)\ **Replies:** 5\ **Last updated:** [March 3, 2020, 1:26am UTC](https://forum.chiarisupport.org/t/follow-up-visit/5148 "2020-03-03T01:26:20Z")
I just got done with my second follow up with the neurologist following my diagnosis with Chiari I in May. My dr would not tell me how bad the herniation was with the CM. That the CM wasn't causing my symptoms and she wa… --- ## [New to support groups, but is there anyone out there like me?](https://forum.chiarisupport.org/t/new-to-support-groups-but-is-there-anyone-out-there-like-me/12992)
**Author:** [@laurie](https://forum.chiarisupport.org/u/laurie)\ **Replies:** 8\ **Last updated:** [February 2, 2020, 5:53pm UTC](https://forum.chiarisupport.org/t/new-to-support-groups-but-is-there-anyone-out-there-like-me/12992 "2020-02-02T17:53:05Z")
Hello, I’ve never participated in a support group before, but I’m going to try. I’m having a down day when I feel like my Chiari has ruined and robbed me of so much. I was first diagnosed in 2011, underwent my first d… --- ## [Finally found my neurologist!](https://forum.chiarisupport.org/t/finally-found-my-neurologist/12988)
**Author:** [@MichelleP](https://forum.chiarisupport.org/u/MichelleP)\ **Replies:** 0\ **Last updated:** [January 17, 2020, 10:41am UTC](https://forum.chiarisupport.org/t/finally-found-my-neurologist/12988 "2020-01-17T10:41:40Z")
After seeing several neurologists & neurosurgeons who couldn’t help me, I finally found THE ONE! I’ve been trying to find help since last August when I could no longer hide my symptoms & pretend I was fine anymore. Out o… --- ## [Nearly two months post op](https://forum.chiarisupport.org/t/nearly-two-months-post-op/12087)
**Author:** [@Geo](https://forum.chiarisupport.org/u/Geo)\ **Replies:** 3\ **Last updated:** [August 7, 2019, 8:33pm UTC](https://forum.chiarisupport.org/t/nearly-two-months-post-op/12087 "2019-08-07T20:33:50Z")
Just after surgery, I was doing great. I was so excited. However, I knew my symptoms weren’t going to stay gone. About two weeks after surgery I got some of the worst headaches of my life. They lasted a week but I’m happ… --- ## [Employment yay!](https://forum.chiarisupport.org/t/employment-yay/11418)
**Author:** [@thebrainsurgerychick](https://forum.chiarisupport.org/u/thebrainsurgerychick)\ **Replies:** 7\ **Last updated:** [May 26, 2019, 12:50pm UTC](https://forum.chiarisupport.org/t/employment-yay/11418 "2019-05-26T12:50:19Z")
Hi everyone!!! I just have to have a little celebration finally! after 5 years of dealing with full blown chiari,surgery etc I am now EMPLOYED!!!.There is hope people!!! im kinda scared cause I don’t know how I will cope… --- ## [Hello from Arkansas](https://forum.chiarisupport.org/t/hello-from-arkansas/12050)
**Author:** [@hcook](https://forum.chiarisupport.org/u/hcook)\ **Replies:** 4\ **Last updated:** [February 21, 2019, 2:58pm UTC](https://forum.chiarisupport.org/t/hello-from-arkansas/12050 "2019-02-21T14:58:09Z")
Hello everyone, my name is Heather. I am a married, mother of one daughter and just recently became a very proud grandmother of a beautiful baby boy. Last year I went to the doctor in late May 2018 regarding head tremo… --- ## [When is enough , enough?](https://forum.chiarisupport.org/t/when-is-enough-enough/11972)
**Author:** [@Rebecca\_M](https://forum.chiarisupport.org/u/Rebecca_M)\ **Replies:** 13\ **Last updated:** [January 30, 2019, 12:32am UTC](https://forum.chiarisupport.org/t/when-is-enough-enough/11972 "2019-01-30T00:32:38Z")
When you Chiarians are experiencing a crisis of pain and multiple symtoms when do you seek medical intervention, what is the last straw before you go get help? Do u trust your primary care physician to help you? Would yo… --- ## [My physician discontinued my care DUE TO COMPLEX CASE](https://forum.chiarisupport.org/t/my-physician-discontinued-my-care-due-to-complex-case/6188)
**Author:** [@Rebecca\_M](https://forum.chiarisupport.org/u/Rebecca_M)\ **Replies:** 12\ **Last updated:** [January 22, 2019, 7:52pm UTC](https://forum.chiarisupport.org/t/my-physician-discontinued-my-care-due-to-complex-case/6188 "2019-01-22T19:52:29Z")
Have you ever received a registered letter by mail from your physician's office? I did it stated a code # and stated my Dr will be discontinuing my care due to the complex nature of my case and that I need to call my ins… --- ## [Fingernail issues](https://forum.chiarisupport.org/t/fingernail-issues/11771)
**Author:** [@Andrea3](https://forum.chiarisupport.org/u/Andrea3)\ **Replies:** 1\ **Last updated:** [November 20, 2018, 9:20pm UTC](https://forum.chiarisupport.org/t/fingernail-issues/11771 "2018-11-20T21:20:26Z")
The last couple of days I have noticed horizontal indented lines on a few of my fingernails that I haven’t noticed before. I’m curious how many other chiarians have this as well… --- ## [Can I sky dive?](https://forum.chiarisupport.org/t/can-i-sky-dive/11692)
**Author:** [@thebrainsurgerychick](https://forum.chiarisupport.org/u/thebrainsurgerychick)\ **Replies:** 1\ **Last updated:** [October 17, 2018, 10:17pm UTC](https://forum.chiarisupport.org/t/can-i-sky-dive/11692 "2018-10-17T22:17:16Z")
Hello everybody so I was decompressed 2 years ago had all complications but making great progress. My cousin asked me if I wanted to go on a sky dive with her and I said great! lets do it haha.She then said “meaning no o… --- ## [Possibly, Finally Found a Neurosurgeon](https://forum.chiarisupport.org/t/possibly-finally-found-a-neurosurgeon/11313)
**Author:** [@LiLWriter](https://forum.chiarisupport.org/u/LiLWriter)\ **Replies:** 7\ **Last updated:** [August 4, 2018, 1:32am UTC](https://forum.chiarisupport.org/t/possibly-finally-found-a-neurosurgeon/11313 "2018-08-04T01:32:20Z")
Hi Everyone :). I have probably a first positive update. Over the last two months, in the area of NY state, I’ve learned two things, which have lead to something positive. (1) Neurosurgeons in this area who specialize i… --- ## [Health problems](https://forum.chiarisupport.org/t/health-problems/11362)
**Author:** [@Andrea3](https://forum.chiarisupport.org/u/Andrea3)\ **Replies:** 0\ **Last updated:** [July 17, 2018, 1:50pm UTC](https://forum.chiarisupport.org/t/health-problems/11362 "2018-07-17T13:50:07Z")
Well I have been having some health issues that I’m not sure is related to chiari or I’m just that unlucky. With it being summer time I couldn’t imagine being sick. First it was strep throat then into bronchitis! Bad swe… --- ## [Was it really Chiari?](https://forum.chiarisupport.org/t/was-it-really-chiari/11196)
**Author:** [@mollycule](https://forum.chiarisupport.org/u/mollycule)\ **Replies:** 7\ **Last updated:** [June 21, 2018, 10:33am UTC](https://forum.chiarisupport.org/t/was-it-really-chiari/11196 "2018-06-21T10:33:41Z")
I had surgery 12 years ago for 13 mm tonsils from my Chiari…or what I thought was Chiari. I got two years of relief. Since that surgery, my balance went to hell, my headaches returned (brought under control with Lyrica) … --- ## [First NS appointment](https://forum.chiarisupport.org/t/first-ns-appointment/6711)
**Author:** [@Fugu](https://forum.chiarisupport.org/u/Fugu)\ **Replies:** 12\ **Last updated:** [May 17, 2018, 7:04pm UTC](https://forum.chiarisupport.org/t/first-ns-appointment/6711 "2018-05-17T19:04:25Z")
Hello everyone! Yesterday I saw a NS, who is also a neurosurgery professor. I was plesantly surprised about him. He seemed very sensible and down to earth. My mom thought he would be arrogant, but he wasn't. To my surpr… --- ## [Symptoms after surgery](https://forum.chiarisupport.org/t/symptoms-after-surgery/10898)
**Author:** [@wrumble](https://forum.chiarisupport.org/u/wrumble)\ **Replies:** 4\ **Last updated:** [May 16, 2018, 9:46am UTC](https://forum.chiarisupport.org/t/symptoms-after-surgery/10898 "2018-05-16T09:46:30Z")
I am 2 mos. Post chiari surgery. I also had a shunt surgery before that. I am having alot of issues since my surgery that has either worsened or appeared since surgery. I had a MRI through my family doctor who said I had… --- ## [Confirmed diagnosis!](https://forum.chiarisupport.org/t/confirmed-diagnosis/6585)
**Author:** [@liaspyre31](https://forum.chiarisupport.org/u/liaspyre31)\ **Replies:** 4\ **Last updated:** [March 12, 2018, 6:03am UTC](https://forum.chiarisupport.org/t/confirmed-diagnosis/6585 "2018-03-12T06:03:05Z")
After a few weeks of waiting (and a rough night at our hotel last night), I saw my new Neurosurgeon this morning, Dr. Ashraf Samy Youssef, at the University of Colorado Hospital in Aurora. Along with the paperwork they g… --- ## [First dentist appointment since surgery](https://forum.chiarisupport.org/t/first-dentist-appointment-since-surgery/10802)
**Author:** [@Andrea3](https://forum.chiarisupport.org/u/Andrea3)\ **Replies:** 2\ **Last updated:** [February 14, 2018, 4:54am UTC](https://forum.chiarisupport.org/t/first-dentist-appointment-since-surgery/10802 "2018-02-14T04:54:13Z")
So I finally grew some balls and went to the dentist. It wasn’t as bad as I thought it would be. The dentist was really sweet and considerate. Gave me tine to sit up when I started hurting. Great bed side manors too. I … --- ## [Feel like giving up](https://forum.chiarisupport.org/t/feel-like-giving-up/10423)
**Author:** [@Ericabak](https://forum.chiarisupport.org/u/Ericabak)\ **Replies:** 16\ **Last updated:** [December 22, 2017, 2:50pm UTC](https://forum.chiarisupport.org/t/feel-like-giving-up/10423 "2017-12-22T14:50:11Z")
So sometimes I feel like giving up things have been getting worse and worse and worse I fell and broke my fingers tore every tendon ligament in my hand my migraines are getting worse I’ve had to call out of work nothing’… --- ## [Two years post-op](https://forum.chiarisupport.org/t/two-years-post-op/10241)
**Author:** [@Andrea3](https://forum.chiarisupport.org/u/Andrea3)\ **Replies:** 4\ **Last updated:** [October 31, 2017, 7:01pm UTC](https://forum.chiarisupport.org/t/two-years-post-op/10241 "2017-10-31T19:01:26Z")
So it’s been two years now since my surgery and everything is going wonderful! My headaches are completely gone still to this day which was my main complaint. Its nice to have a qaulity of life again without pain! Thanks… --- ## [Recent MRI](https://forum.chiarisupport.org/t/recent-mri/10333)
**Author:** [@Andrea3](https://forum.chiarisupport.org/u/Andrea3)\ **Replies:** 2\ **Last updated:** [October 22, 2017, 3:02pm UTC](https://forum.chiarisupport.org/t/recent-mri/10333 "2017-10-22T15:02:52Z")
So I had an MRI for a hematoma at the back of my head which is gone now. I had decompression surgery in 2015 but this new MRI report says my cerebellar tonsil is low lying located at the foramen magnum… Shouldn’t that be… [Next page](https://forum.chiarisupport.org/c/general/whats-new-with-you/13.md?page=1)