Aa
MONDAY"S RANT ~~2014
Rainy days and Mondays always get me down"
.....so lets rant all day Monday- each Monday a different topic!!
Idea's for rants...ur NS, ur NL, ur PCP, ur meds, family and friends...the list is endless......
........ post ur rant and get it out of ur system and enjoy the rest of the week!!
.....so lets rant all day Monday- each Monday a different topic!!
Idea's for rants...ur NS, ur NL, ur PCP, ur meds, family and friends...the list is endless......
........ post ur rant and get it out of ur system and enjoy the rest of the week!!
COMMUNITY LEADER
Hi....all....I guess everyone is too busy to post a rant....sigh....
COMMUNITY LEADER
hmmm...lol....mt thought this week is the same...how fast time is going....I know we all get busy this time of yr....but I hope you all continue to share with us your Chiari journey and daily ups and downs....it helps to share so others can see they are not alone <3
COMMUNITY LEADER
Hi all...any rants this week?
My only rant is this, how is time flying by as fast as it is....seems faster this yr....sigh....
COMMUNITY LEADER
As long as you educate yourself you should be able to know when you are with the right Dr....I saw a few b4 I made a choice as to whom I would see for treatment...and it does take time....
Keep us posted.
Ok. I did some research with some help from my uncle and we found a hospital near my location that does treat chiari, so I am going to try my luck with them and see if they can help me. I know finding the right dr takes time, but I have to start somewhere..so I'm going to fax them my mri reports.
COMMUNITY LEADER
You deff want a true Chiari specialist....not necessarily are all on the list Chiari specialists in that it is not their focus....some research Chiari and only treat Chiari and related conditions....while others may do one from time to time.....
The list is only here for you to use to research Drs, it is not a referral nor an endorsement of those on it.....
A true Chiari specialist will look for ALL related conditions,,...the others may not.,,..and that can affect the recovery process.
Is it better that I see a well known chiari specialist..for example, like one of the ones on the drs list on this site?
COMMUNITY LEADER
No worries....as for instability....yes, it can be related to Chiari in that Ehlers-Danlos is a related condition and usually the reason for instability as it is a connective tissue disorder....with the tissue that are to hold our joints in place fail, our muscles try to help causing all over joint and muscle pain.....
Do look into EDS and have it ruled out. EDS can cause Headaches, and many of the same symptoms as Chiari....
Thank you so much for your advice..I'm not gonna give up on finding answers..especially since my health is slowly deteriorating right before my eyes...and it is the most scariest thing. I'm glad I could come on here for support. Thank you.
Thank you for your response. I have not been diagnosed with chiari but I have so many similar symptoms to it. Is instability in the C1 and C2 related to chiari at all?
COMMUNITY LEADER
Push for more testing and answers....that is the way to move forward....Many Chiari specialists will offer all sorts of tests in hopes to rule out the related conditions and to help them know the best way to proceed should surgery be an option.
Hang in there.
I have been diagnosed with cranial cervical instability and chiari.. I have had the Flex extension exray only because, I was getting a second opinion and this doctor said i needed to do it, then came to find out that those exray are not for diagnosing CCI.. I also did physical therapy for my neck wich did nothing!! My dizziness is much worse my vision is worse and now I at the point I no longer go out...but I do have a good NS who did diagnos me from the very beginning when he first saw my MRI saw make sure you find a good chiari specialist..I am going to have sugery next moth the decompression and the fusion of myC1&C2... I also did a lot of research and had several second and third opinions..before I made my decision.
Good luck and keep us posted
Good luck and keep us posted
Also I noticed that my head bobs back and forth when i stay still and suddenly my whole upper body starts rocking back and forth. It's very disturbing...:/
I have never had flexion and extension xrays because this instability issue was never addressed to me in the mri report. I was just told that I had slipped discs and cervical kyphosis, which i use a cervical traction for. I have been to physical therapy for my neck problems and it only made me worse and feel dizzy. Nothing has helped for me at all. Which is why I'm so desperate for help and answers. I also believe I might have Ehlers Danlos because of my joints starting to pop a lot and feel loose. I'm still undiagnosed and I'm hoping to go see a neurosurgeon soon for another opinion...I just hope that I can be taken seriously....
COMMUNITY LEADER
Instability in that area can get worse post op and a fusion may be offered....I was told I had it and would need surgery too, but I was determined not to have it and did my neck exercises religiously and my neck seems stronger...
Did you have a flexion and extention xrays?
Hi. Well I though I'd come to rant about my symptoms. Lately my head is beginning to feel harder to hold up and my neck feels weak, also my visual disturbances are getting worse. I posted my MRI of my neck to another website where a kind lady was able to look at it and point out some abnormalities. She noted that I had instability between my C1 and C2 and the rear of my C1 encroaches a little into my spinal opening. I'm surprised the radiologist never mentioned this. I've read up about craniocervical instability and I wonder if this is what I might have...? I'm still going to get another opinion on all this soon..and with a neurosurgeon....:/
COMMUNITY LEADER
Hi All.,,.,..well my rant this week is this....I was so hoping to develop a community here where we share a little more of ourselves with the Daily threads and Prayer Threads,...
My comment this Monday isn't really a rant - rather just a disappointment. Today is my birthday, and everyone I care about is going to work or school! Well, maybe not all living beings I care about - Sophia, Lucy, and Fitzgerald are always here to cuddle with and meow "happy birthday Mama"!
COMMUNITY LEADER
Hi All....well my rant for this week....I got my phone....a good thing, I know....but....I always had a flip phone and I am so good at txting and using it....now...swipe icon to answer phone...I swipe, swipe again, again...dang, it went to declined call...ugh....I hope I can get the hang of this soon....lol...anyone else having issues like me???
Have an Answer?
You are reading content posted in the Chiari Malformation Community
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease
