I have a 22mm chiari malformation... just diagnosed last thursday (2/7/13)... I am an ER Nurse, I never thought of ever having "something wrong with me"
I guess I can say I am lucky I am only having one symptom that I know of and that is severe migraines...that are very random and no rhyme or reason to them most times. I have passed out 2 times in the past 2 years... something that has never happened to me before.. I seem to get lightheaded easily when going from laying to standing (of flipping my head back up from blow drying my hair) I can't say I have had much tingling or numbness or difficulty swallowing.. maybe some difficulty finding words but I truly haven't thought of it being a symptom.
AAANNYYYWAY... I understand that nothing will shrink my brain or make my skull grow to fit my lovely large brain other than surgery... but my question is diet... my best friend is wanting me to take a drastic change in my diet and try very organic, almost 100% plant based diet... only keeping some meat.... she states cleaning my diet will help me feel better and decrease inflammation... any health nuts out there who has tried this?
I have been to my first NS appointment this past Monday. Basically, all I know is that I can live my life like I normally do and to watch for more symptoms... I was a little overwhelmed that day and wasn't too sure on questions to ask, I really was wanting more answers or explanation of CM. All I know is that having surgery is up to me because my only true symptom is migraine/headaches. I am a little frustrated and looking for any answers i can get. I am going to try to possible go organic... and possible paleo just because i want to clean and detox my entire body because I feel invaded!! I have never had anything "wrong" with me.. i am the caretaker, I am the nurse.. not the patient... so maybe that will be my coping method along with getting back into my races.... I am familiar with autonomic dysfunctions, my dad suffers from MSA (which is also a a brain disorder that is not known much). I used to go to chiropractor, I always thought my stiff neck and back problems where related to my rough life of being knocked around on the basketball court and softball field... that is far in the past now... no more chiro...
*very frustrated**
Beeba said:
Tell your friend to enjoy her diet - you have a 22mm herniation. Highly symptomatic or not that is signifigant and I doubt carrots will help. A paleo diet with non inflammatory properties can help lessen the symptoms. You are very new and you will find your friends will recommend all kinds of things with no medical knowledge of your condition. I was told I just needed to meet my friends weekly at Ihop for breakfast. A top ns had another opinion. And just because I know you are going to get hit with lots of well meaning yet wrong advice -DO NOT GO TO A CHIROPROPRACTOR. I don't know if that has been suggested but I am guessing it will. And passing out really ever is not non symptomatic. There is a reason. Best wishes and no offense to your friend I am sure she is well meaning but her suggestion is not a good one. You need a well balanced diet with lean high proteins. And an appointment with a ns to get their advice.
I love your picture! I am definitely not someone would call a health nut! I do have a niece that is, she's living in Africa with her new Husband, CRAZY girl but I love her. It's funny because her sister is a model and here's my other niece that won't shave her armpits. hehe The only downside I've heard of not eating meat is from my sister in law. She had a friend that couldn't get pregnant, the Doctor told her to start eating meats and she got pregnant right after. For me, I haven't notice any difference in what I eat? It's more how I sit, how long, and what triggers it. I wanted to say hi because I saw that you are an ER nurse, my daughter spent most of the night in the ER with one of her roommates and guess what she wants to be? An ER nurse, so I thought how great is this! Unfortunately she also has Chiari and I will have to tell her between semesters at College since they didn't feel it prudent to mention it when she had the MRI almost two years ago. :( Back to her roommate she tore the muscles in her shoulder playing basketball and was taken to the ER by Ambulance. This same roommate was messing around with another roommate and hit her head so hard she passed out. Definitely had a concussion but wouldn't go to see a Doctor so we know she has a high pain threshold. My daughter got to enjoy the joys of immature roommates as we have had to make lots of ER visits and my health has not been the best. Since she wants to be a nurse she is always watching and asking questions and is always helpful. Apparently two roommates preferred to laugh at the girl on medication while my daughter and another girl were trying to get her up 3 flight of stairs to their apartment. Oh the joys of teenagers! :) So lengthy but anyway welcome! I'm really glad you found us, not just because you're a nurse! :) I hope that you continue to just have the headaches, so far that is all my daughter is dealing with. Please let us know if we can help in anyway. If you have any question about the health stuff I can always email my niece. She really is awesome, they are working with African women to help them gain skills so they can support their families. Take care and good luck.
I love you BEEBA! You are so great! You crack me up.
Sarah
Beeba said:
Tell your friend to enjoy her diet - you have a 22mm herniation. Highly symptomatic or not that is signifigant and I doubt carrots will help. A paleo diet with non inflammatory properties can help lessen the symptoms. You are very new and you will find your friends will recommend all kinds of things with no medical knowledge of your condition. I was told I just needed to meet my friends weekly at Ihop for breakfast. A top ns had another opinion. And just because I know you are going to get hit with lots of well meaning yet wrong advice -DO NOT GO TO A CHIROPROPRACTOR. I don't know if that has been suggested but I am guessing it will. And passing out really ever is not non symptomatic. There is a reason. Best wishes and no offense to your friend I am sure she is well meaning but her suggestion is not a good one. You need a well balanced diet with lean high proteins. And an appointment with a ns to get their advice.
Trying an anti-inflammatory diet couldn't hurt. I have celiac disease so I don't eat gluten grains as it is. I tried the paleo diet before surgery but I didn't see much improvement. My issues were more along the lines of numbness, tingling, burning sensations, fatigue, and dizziness. I did have headaches but they weren't the worst.
Try the Dr. Weil diet or paleo and let us know how it goes. I'd kind of stay away from the mostly vegetarian diet for the reasons stated above!
Well meaning people have advised me to go to chiropractor, have my head massaged, go on lemonade fast, or maybe a hot bath would cure my chiari! (I have found that Vitamin M [&M] is the most effective therapy -haha!). But I just wanted to let you know that I have been a vegetarian my entire life, even before it was cool. I am 42. And I have always been considered healthy until my recent chiari diagnosis. I get plenty of protein from various sources; beans, nuts, cheese, soy milk, etc. I have never had any problems with wound healing. (I am also a nurse and used to being the care taker…) I don’t think it could hurt to try a change in diet. Try it and see what works best for you. Best of luck to you.
Yes, my daughter is also a nurse (RN student) and has passed out a couple of times recently and was diagnosed with Chiari 1 malformation. She has also suffered for years with headaches and lived on Advil. My son is a Chiropractor specializing in functional neurology and has helped her a lot. She is now on a gluten free diet and eats VERY healthy and I’m glad to report NO headaches. If you have any functional neurologists in your area who also specialize in nutrition I suggest you give it a try!
Well...I'm a vegetarian. And yes, eating a plant based diet will help reduce inflammation, and in general you will feel better. But, with a 22mm herniation, I would guess there is some significant CSF blockage. No amount of broccoli or spinach is going to help that. You brain isn't inflamed...its just to big for your skull. Probably because you filled it too much in nursing school ;-)
Ok thought I would put this here… Idk thought I would ask. I was “told” that my chiari could potentially be because I’m a fat a$$ … Lol because in past brain scans from years ago I did not have chiari , but over the last few years it had showed up … And since chiari is almost always had since birth and I haven’t had it till a few years ago… They are telling me its because I’m chubby and if I lose weight and have gastric bypass it could reduce my ever so horrible migraines etc …
Thoughts ?
I would disagree. It's possible that it was missed on earlier scans because it's not well known and is very commonly overlooked. You could acquire chiari if you were in accident of some sort but not from gaining weight.
My sister is a vegan and is on of the most unhealthy ppl I know. While I personally havent tried a certain diet I have read were gluten can be a problem and organic is better. You just have to find what works for you. GL