Holistic Treatment for the Management of CM

General
1

I was just diagnosed with CM Type I, yesterday. I know that there are a lot of steps that my physician wants me to take such as, meet with my neurologist and with a neurosurgeon. I'm the type of person that doesn't even like taking asprin. I like to go with the least invasive way of dealing with things and progressively get more invasive if necessary. I'm having symptoms such as fainting spells, anxiety, trouble hearing in my left ear, dizziness, fatigue, having trouble finding the correct words, and my balance and coordination are off. My symptoms have already started to affect my quality of life.To the best of my understanding, this is not life threatening and the surgery just provides relief from the symptoms. If I am wrong about any of this please feel free to interject.

Anywho, this is just a long set up to ask, has anyone had luck with holistic treatments to manage their symptoms? All I keep seeing is about surgery and I just keep thinking that there has to be something out there to help me with out being that drastic.

2

Surgery may provide relief from symptoms. Some symptoms. It is also a person to person basis where it really affects all of us differently (as does chiari)
For me, the surgery was a success and I don't know what would've happened had I not gone through with it. I was told after surgery that my skull was eggshell thin and it was good they got in there. Not sure what would have happened had I waited. I also was waking up with pain so bad where I couldn't physically move my neck at all some days. And every morning I was vomiting from the pain and pressure. I haven't had that since then.

But as I said it is different for every person as we are all experiencing different sypmtoms, different severitys and surgery may not help all of us, unfortunately.

3

Every case is different but you definitely have all the common symptoms. I used to feel the same way about all this unnatural and extreme treatment. But you've really got to do some homework online and see what works for you. This is a very complicated situation you are in now :) Nobody really knows how people get Chiari but it seems to be a developmental disorder and for others it can also be a connective tissue disorder. So then the question becomes, why did we develop differently than people without chiari. This is still unanswered but some think it's from the toxic world we were born into, along with a lot of other reasons that would take a serious amount research to find out.

Basically what I'm trying to say... you are going to find that the common treatments for Chiari are seemingly very unnatural (pills, surgery, etc..) but they are the best things the world has come up with so far and seems to be helping a lot of suffering people. I'm sure that 20 years in the future , our current treatments will look like we were from the stone age but most of us can't wait that long. You are correct, it has been very rare for people to die from this but it has happened. Symptoms can get worse and you can develop a syrinx if you don't already have one. Also, your age may have a lot to do with how well you recover from surgery if surgery is needed. Surgery can at the very least stop your symptoms from getting worse, and hopefully you could say goodbye them forever :)

Some things I have learned:

-Stay away from chiropractors, they don't know what they are dealing with and can hurt you.

-Doses for medication are different for everybody. example: the emergency room wanted to give me a prescription for 600-800mg of Motrin and what helps me right now is actually only 200mg.

-Caffeine can go either way but if you find it helps I personally like a light coffee or green tea.

-Most all natural treatment businesses will tell you they can definitely help you even if they can't and they charge a lot money for a bunch of bullpucky.

Hope this helps <3 good luck

4

Oh, and beware of stress. Physical and emotional. Pushing yourself too much can bring about a world of pain you never thought imaginable and it can take weeks to recover from, so take it easy :)

5

Thank you so much for your responses! I've already heard to stay away from chiropractors because of the condition. I have noticed that stress brings out some of the symptoms even more. It's been really difficult to explain to people because I've had these symptoms for years but now I have a name for it. Before it was "Brandy you're just being sensitive". The way I figure is if the neurosurgeon doesn't say that I HAVE to have surgery, I'll just try to manage the symptoms. I just like to start with the least invasive way of dealing with things first.

6

I was so excited today when I stumbled upon a list of things for people with Chiari to do to help with the symptoms. Some of the things may seem like common sense but I'm just thrilled with the suggestions. http://www.mdjunction.com/arnold-chiari-malformation/articles/lifestyle-changes-to-help-with-chiari

7

Brandy - I live only a few miles from North Beach. There is another young lady in North Beach who recenty had surgery for Chiari and I know of several others in Calvert who have been diagnosed - I've sent you a friend request. Perhaps you would like to join our support group which meets at Doctors Hospital in Lanham MD. We have great guest speakers. The educational sessions are geared toward teaching the medical community about chiari; the support group sessions before the training are for us chiarians to talk with each other. I always stay for the educational stuff though because I do learn from it and there is an opportnity to ask questions of the doctors who are briefing.

Hugs

Shirley

8

I had by chance discovered a few years ago that I could manage the symptoms (pain and headache) by eating a pretty intense anti-inflammatory diet, ie lots of veg, absolutely no gluten and low sugar. However, after that seemed to work like a charm for several years the pain has come back as strong as ever, if not worse. (Which lead me to pursue the source of the pain and be diagnosed with Chiari 1). So I guess I'm saying there maybe options to help manage symptoms, diet possibly one of them, but at least in my case, it didn't work forever.

9

I had the surgery at UH in Cleveland in July, 2014. At first it seemed successful. But then about three weeks post-op most of my symptoms started coming back in some form or another. Another three months after that and everything except the vertigo when standing has come back full-force. Now almost two years later I’m worse now than I was before.

I relocated to the Wilmington, DE area last October. I have as of yet been able to find a doctor that will help me. Three different ones have turned me away, so I’ve gone well over six months without any sort of treatment. I’m looking into holistic therapies as well…but again, haven’t found a practitioner that will even think about touching me.

I’ll be moving to the Elkton, MD area this fall, so maybe I’ll make the trek to join the support group.

What I’m saying, along with everyone else is just find what works for you. I take two Aleve before bed every night and for some reason sleeping with a heating pad under my neck helps A LOT. I’ve tried the diet changes, that didn’t help me. Keeping relatively stress-free does help. I’ve trained my dog to warn me if I start to feeling wonky, she gets super-clingy.

Best of luck to you!

10

I just gave this reply to Wobbly, I hope you will forgive the cut and paste method. I am very much like you, in temperament and symptoms : ) please contact me if you would like more information on the genetic screening or anything else.

Take care.

"Hello,
I would like to say, please breathe and be certain before anything is done in the way of surgery. And until that MRI, you just don’t know, and maybe not even then. While everyone agrees, per MRIs ad infinitum, that I have a Chiari malformation, no surgery on the horizon for me, per two different Neurosurgeons. I have had one test that has made a difference in all of this, it was a genetic screening for tolerance to pain meds, and the like. It found that I have a mutated gene, that makes it impossible for me to metabolize folic acid. (One neurologist, whom not only mis-diagnosed me with carpal tunnel and advised surgery on both hands , but also, in response to my comments regarding my memory said to me “folic acid, folic acid, folic acid” to which I continued to poison myself to an even greater degree than I had been my entire life. Was just so wrong.) I have changed my diet to eliminate folic acid, and have begun taking L-methyl folate, which is what folic acid becomes after it has metabolized (By prescription only). The difference has been dramatic. I have more energy, I am much less dizzy, the fog has lifted. I still have Chiari, and yet I can function in the world so much better.

This genetic test also found that there are no pain meds that will help me, also in my DNA. The doc that did this test said that most of the people she tested, have at least some of these issues. Most notably the MTHFR mutation, that causes the issues with folic acid.

Today, my memory works, for the first time in my life. Still not perfect, and yet, I have a much better memory today than I ever had, and am actually remembering some things long forgotten. I’m about six months into my l-methyl folate therapy.

Hope this helps.

Feel free to contact me any time.

I know you want answers now, just remember we get one chance at this body, we have to be pro-active, and make choices with great care.

Peace and Love."

11

Hi Brandy, Sorry for such late contribution. I'm a Chiari 2. Originally diagnosed in 1999. I've been using "holistic" methods since. The description of the surgery, and after effects of, i'm sorry to say horrified me so i went the other direction.

(BTW, facts: Chiari Tpye 2, Meningenoma Brain Tumor, right frontal lobe, 52 years old, Live in Oklahoma. Have seen Neurosurgeon at the Mayo Clinic and OU Research Center for Brain and Nuerological disorders)

All i can say is that i agree somewhat with Bill Zern. And sadly, you will have to pursue comfort on your own. I've find (mostly) success, with the following:

Wear extremely comfortable, well padded shoes only. (I like New Balance and Naturalizer Natural Soul)

Get a firm pillow and wear a soft collar neck brace to sleep.

Eat a diet rich with vegetables and fruit and nuts.

Lots of water

Take at least a 1 hour nap half way through your day, get at least 6-8 hours at night

I watch my caffeine and sugar intake.

Yoga and/or Tai Chi (helps with balance, and muscle tone).

Don't stress your neck area by carrying bags/purses, etc. Get one of those rolling carts.

Don't let yourself get stressed (easier said than done, i know! :) )

I also take some herb supplements that i feel really help me. (Look at Earth Clinic.com)

Keep a diary of all symptoms, headaches, dizzy spells, syncope, foot drop, limb numbness, nystamagus, etc..) Helps when talking with Dr about progression of symptoms.

I also walk 15 miles a week, to keep weight off your spine, and once a week i use a rowing machine to keep the muscles in my neck/back toned. This helps support the spine. Don't overdo on the weight! you push. I use 10 lb resistance only.

Good Luck to you and don't give up! you can live with this, it might be uncomfortable at times, but it CAN be done without surgery..