Doctor/Specialist

[LILYELLOWWOLF]

I am 36 yrs old mother of 2 and 6 mo ago I had a (spell)  thought I had a stroke. Went to many Dr.'s and went through several diagnoses until my MRI said I had Arnold Chiari Malformation. The Neuro Surg they sent me to said surgery was one of the only treatments. I cannot afford or have the time to stay off work, I have extreme Headaches and stiff neck, have been clumsy like run into things, and very sleepy cause I can't never sleep.  Is there not any other treatment ?  Does anywhere specialize in this ?  My Dr himself said that he doesn't know if this surgery he proposes will fix my problem.  Any advice will be greatly appreciated.
Thanks

[05271959]

hey lilyellowwolf,
after suffering great pain i was blessed to have a nuerosurgeon step in and diagnose my mystery of 49 years...i had a lot of the symptoms you had and got them individually checked out but they were all related to the Arnold Chiari Malfunction type II...it was the best thing that ever happened to me...not only has my vision improved but the blood pressure has come down, palpitations are gone, my center of gravity has improved with physical therapy, etc...check with your specialist and talk to others...as for the children i have one and he is very happy...i have not returned to work yet (math teacher) but that will come in time...pray about it and you will do the right thing i know i did...best of luck to you

[Aussie1222]

It's great that you are getting some alternative relief - but please, do not go to a chiropractor until you have had an MRI of your whole spine.  Sometimes chiari causes something called a syrinx.  This is like a cavity in your spine where fluid builds up.  It causes nerve damage, and could actually paralyze you.  So please be careful.

Here's a tip for the headaches - get a good pillow!!!!!  Something contoured, and memory foam.  www.medpillows.com offers a chiari pillow.  I have never tried this brand, but I have a tempurpedic, and my headaches are finally getting some relief!!!  My doc. even told me at my last visit that the fluid flow had improved around my chiari.  Getting a good pillow really is worth it!!!! (Mine cost $120, but they are tax deductable as a medical expense).

Good luck.

[LILYELLOWWOLF]

THANKS FOR YOUR ADVICE, I WILL CHECK OUT THE SITE FOR SPECIALISTS, I AM TRYING OTHER THERAPY (MASSAGE AND ACCUPUNCTURE) SO FAR ONLY TEMP RELIEF BUT IT DOES FEEL GOOD! HAHA   THERE SEEMS TO BE NOTHING THAT HELPS MY HEADACHES  THEY HAVE ABOUT GOT ME, YOU PROBABLY DON'T WANT TO HEAR ALL OF THESE COMPLAINTS, I GO TO WORK EVERYDAY  GO TO MY DAUGHTER'S VOLLEYBALL GAMES, HELP MY 7 YR OLD WITH HOMEWORK AND COOK SUPPER EVERY NIGHT  I DON'T EVEN HAVE TIME TO COMPLAIN MYSELF  BUT LATLEY  I JUST FEEL LIKE EVERYTHING IS CRASHING  IN AROUND ME AND I JUST WANT TO GO TO BED FOR A LONG TIME    ANYWAY SO MUCH FOR FEELIN BAD AND COMPLAINING   THANKS AGAIN FOR YOUR ADVICE AND READING MY COMMENTS    I HOPE YOU HAVE CONTINUED SUCCESS WITH YOUR ALTERNATIVE TREATMENTS  THANKS AGAIN LILYELLOWWOF

[Aussie1222]

Your ns is right, the surgery doesn't always help, and it is not a cure - it is a treatment.  There are specialists, and I recommend that you speak with a specialist before making any decisions.  You can find a list of patient recommended specialists at: http://www.wacma.com/   Click on the onsight info tab, then scroll down to "going to the doctor" click the members recommend link.

You really have to weigh out all sides of the surgery before you decide what is best for you.  I have never had the surgery.  My cm is 7mm, with some symptoms, but since March my symptoms have been getting explained through other diagnosis.  For instance, my fatigue is related to a B-12 deficiency, my "spells" (dizzy, weak, headrushes, etc.)are related to sudden drops in blood pressure, my stiffness in my joints are related to thoracic outlet syndrome, and my numbness - carpel tunnel.  Maybe all of these things are truly caused by the Chiari, I will never know.  But I am able to treat each of these symptoms without opting for brain surgery, so I feel really lucky.  Perhaps if you speak with a specialist and explore other avenues into your symptoms you will find a means of treating your chiari other than surgery.  However, it is very important that you speak with a specialist.  If you had eye problems you would go to an eye doctor, if you had cancer, MS, Lupus, heart disease, etc. you would find an appropriate specialist - please do the same with your chiari.  And as far as money goes - you'll have a lot less money if you are permanently paralyzed.  So, please be careful about your health - there may be financial help out there for, I actually no people who get workers with disability compensation - they work, and get help on the side.  It is possible.  Call your county assistance office, there is no shame in being sick.  You are sick, we all know what you live with everyday, it is ok to admit that you are sick.  There is help out there, but you have to find it.  Good luck to you!