How do you get the help needed?

[tim_l]

My wife has been dx with CMI. She has most if not all the symptoms listed on the Chiari Institute's  website. She has been seen by neurology and a neurosuregeon. She was told to see another neurologist for a second opinion. In one of here recent ER visits (FOR A MIGEAINE AGAIN!!!) the doctors note " her Chiari malformation shows progerssion to the 9MM herniation". What does it take to get it through there heads to STOP TREATING THE SYMPTOMS AND FIX THE PROBLEM!!!!??? I am in the ARMY as a Combat Medic and have just com back from Afghanistan. I have been trained to help others as quickly as possible and do everything I can to save lives. This is killing me to watch my wife of 18 years go through this. What can be done? What else do we do? Where do we go from here? I do not want to be transfered to another duty station just to start this process all over again! My wife has suffered far to long and now 2 of my sons are getting migraines. This seems like a quiet epidemic. Is congress tracking this? Are there State reps that we can speak to about this very serious health problem? Any info or help would be greatly appreciated. Thanks  tim

[selmaS]

Hi and welcome to the Chiari forum.
First let me thank you for your service to our country.

Second, as the 2 other posters have already stated, u do need to find a chiari specialist....depending on where u live u may need to travel to get to one.

Ur wife should also have testing to rule out other related conditions...like syringomyelia, tethered cord, Ehlers- Danlos, and intercranial hypertension.And last but not least, she needs to be checked for a CSF leak.

Chiari is congential and considered to be genetic as well, please get MRI's for ur sons to rule chiari out.It is possible to get migraines along with chiari HA's.

I am not sure medical staff within the military are well informed on this and u may have to go to outside drs for her treatment.There is no cure for chiari, only treatment and surgery is a last option.The PFD surgery is to stop the progression of symptoms and to help prevent nerve damage.It may help lessen some of the current symptoms, but many if not all can remain, it all depends on the amount of symptoms and their serverity prior to surgery.

May I ask, was ur wife in a MVA or a fall recently?

Ask for the following tests to help rule out most of the conditions I mentioned b4...MRI of cervical spine, MRI of thoracic and lumbar spine.CINE MRI to check CSF flow.

Please see the thread for chiari specialists and research ne drs near u .

"selma"

[chadry]

I am also sorry to hear about how bad your wife feels but I think the only way you are going to get any help is if you see a Chiari specialist.
It seems like that is the only way to go with this condition, especially of it is growing in size. What was the size of the herniation when this all started?
There are more tests that can be done and I am sure that others will come here and chime in on all that needs to be done.
It is very frustrating for people with Chiari because of the lack of knowledge of the doctors, that is why a specialist is needed. They understand what she is going through. Many people have to travel to see a specialist. We have a list here of doctors that people have seen.
I wish you and your family all the best.
My daughter has this condition but I am starting to wonder if some of my older children also have it. They are over 18 now so I just always ask them to find a doctor who will let them have an MRI done to see  if they also have the condition.
Chadry

[LG20626]

I don't have any answers for you, as to how you can get the help you need.

I just wanted to offer some compassion for you and your wife.  I totally understand how frustrating it can be to have pain and symptoms without relief.  It's scary and drains the energy from you.  

Have the doctors said why they do not think she is a good candidate for surgery?  Is it possible to get another opinion?

Again, you have my sympathy.  I hope your wife will find relief soon.