[jbug]

I watched Extreme Makeover Home Edition tonight and the females in the family they helped had this disease. I googled it and it really sounds like what I've been dealing with as an adult. I emailed my doc to get an appointment to discuss it with him. Those of you that can Google better than me can you help me find out how they treat adults with this? I found a number of sites about children and Chiari but not many about adults.

Jbug

[Christina86]

Jbug, any of these help?

http://www.mayoclinic.org/chiari-malformation/

http://www.ninds.nih.gov/disorders/chiari/chiari.htm

[(JD)]

It's a very serious surgery. They go into the neck and remove small bone to enlarge the area. Very expensive too. It's easy to know if you have it though, and a doctor in the NE has said to send him xrays of your neck and he'll be able to tell you.

[Danialla]

Actually, I don't think you can get an accurate dx of a chiari malformation without doing an MRI.

I have this malformation and had surgery in 1996 to help relieve some of the symptoms I was having i.e. AWFUL headaches, swallowing problems, along with loss of fine motor skills and my balance.

They took out a small piece of my skull at the base of my brain along with a vertebrae and then sewed in a dura match, made with cow's skin, to hold my brain in place.

I tell people that my brain was just too big for my head......which it was.....technically .

I still have some nerve damage because of the length of time it took to make the correct diagnosis. Sad, because many doctors just assumed my symptoms, very bad headaches, fatigue, etc. were just a physical manifestation of my depression and stress.

I was finally sent to a speech therapist to help me "relearn" how to swallow. I told her that if I were under a lot of stress that I would EAT, not FORGET how to swallow!! SHE finally sent me to a neurologist and then to a neurosurgeon.

I still have problems, but every 6 months I meet with my team of doctors and get an MRI, among other tests to make sure that my brain is still in the right place

If you want more information regarding chiari malformation, along with other issues associated with it, the best site is: ASAP.org

Hope this helped give you a bit more info and feel free to PM me with any questions too.

Take care everyone

[jbug]

Well tomorrow is my appointment with my doc to see if this is what I have. On one hand I am hoping that this is it but on the other hand I hope not too. I don't want to have another surgery but it would be nice to know what is causing my symptoms that seem to have Dr. J perplexed.

Jbug

[Danialla]

What are your symptoms jbug?

[Danialla]

Surgery is always a last resort for someone with a Chiari. It is a very serious surgery as Sky said, and because of the risks is generally used in patients with symptoms that become life threatening.

If there is a suspicion that you have this, an MRI is the only definitive test and you will need to have this test to confirm any diagnosis. If you do have to have one it should also have one with and w/out contrast. Just a few pointers from someone who knows

Good luck and keep us posted.

[Christina86]

((((((((((((((((Jbug)))))))))))))))

hope your appt goes well! Sending good thoughts.

[jbug]

I just got back from the doc and he said no I don't have it. He did an MRI a couple of months ago and looked for it then. The next step is for me to go to a neurologist but there isn't one in my area that he trusts. There is one coming in August that he will refer me to at that time. Until then I have to just deal with the pain.

Jbug

[(JD)]

I'm sorry he didn't tell you this back when he checked, and save you all that concern and wonder. But so glad you don't have this issue.

I'm glad your doctor shared that there are some neurologists that aren't "trustworthy" and others that are! Since it's the truth, it is good to know your doctor is on your "side."

[jbug]

I am blessed to have an awesome doc. Back when I OD'd and my mom wanted to take me off the vent he wouldn't let her telling her that I was going to be ok. I am so blessed by him and his wife its crazy.

Jbug

[Danialla]

Glad that part is out of the way with good results.

Get a copy of your MRI report and have it with you when you meet with the neurologist.

Just a question...do your headaches get worse with coughing, sneezing or if you have to strain while going to the bathroom? Kind of like your head is going to explode your you just wish it would

Take care.....

[jbug]

Yea it does. I have a killer headache right now but its because its getting ready to storm.

Jbug

[Danialla]

I get headaches too with the change in pressures.

What about when you yell? I use to always get bad headaches if I cheered at my kids sporting events.

Do you have headaches when you get up in the morning? When do they go away?

One last thing........ Can you explain to me what your dizziness feels like? Is it more vertigo or balance.....hard to explain I guess but please try...

[jbug]

My headaches aren't to bad when I'm yelling but when there is loud music or a loud atmosphere it makes my head pound.

The dizziness is I could be standing and doing something and the room spins and I either fall or pass out. My doc doesn't know what is causing that either.

I usually have a headache in the morning but it usually goes away by noon but most of the time if I wake up with a headache it is an all day thing.

I am hoping come August when the neuro comes to my area that he/she will be able to figure it out.

Jbug

[Danialla]

I assume you have had your heart checked too. The passing out part is not usually associated with a chari but who knows....

Do you have high blood pressure?

[jbug]

No I don't have blood pressure problems. I've had my heart checked and it came back that its a beatin fine. They did the test where they inject stuff into your IV to make your heart increase and it came back fine.

Jbug

[Danialla]

Well, that is good. Has your general doctor been handling all your medical concerns or have you seen some specialists too?

[jbug]

I have some specialists but for my headaches its been my general doctor. He said that in August when the new neuro doc comes he will make me an appointment then.

Jbug

[Danialla]

Sounds good.....

I would recommend you start making little notes regarding your headaches and any other symptoms you may have over the next few months. I did that, and when I finally got to the neuro doc (took over 4 months to get the referral) I had a list of my past symptoms and new ones as they occurred. Valuable info for the doc and helped narrow down possibly dx's right from the start.

Good luck and keep me posted....not that I would wish a chiari on anyone

[jbug]

Thanks for all your help Danialla. I am looking forward to August so that maybe we can get to the bottom of this.

Jbug