What to do for the headaches

[M_Esmailji]

My wife had mild to severe headaches for the past 6 weeks. We went to see a neurologist and did a MRI scan of the brain. The doc says she has mild tonsillar Ectopia an this can only be rectified by surgery but it's too small to justify surgery. The headaches persist. What can she do to alleviate the headaches as taking pain killers everyday is also not good.

[chanelcrazy]

I've been seeing a Migraine neurologist specialist at UT Southwestern in Dallas, TX. There are not a lot of doctors that specialize in this area. Although I still have headaches, my doctor has been a great help working with me to rule out and identify after many tests and hospital stays. Finding some relief when having these intense headaches is so helpful when dealing with this. She is constantly looking for help for me even though she has an extremely busy schedule with patients and being a professor at the University. Having a life line keeps me hopeful. Good luck with everything.

[selmaS]

   Hi  and  welcome  to  the  Chiari  forum,

Not  everyone  with Chiari  is  a surgical  candidate, so as  the above poster  mentioned  more  testing  such  as a CINE  MRI (CSF  flow study) and a flextion  and  extension xray  are  among  the top....and  Chiari symptoms  do  cycle  so  she  could  be  in a flare,  so  the best  thing  is  rest...anything  that  will help  relax  her....cycles  can last  a few  days  or  a few  months...it  all  depends  on the individual....most  meds  do not  help with this pain....

It is  also  important  to remember that  even  tho  we  have  Chiari  that some  symptoms  could  be  from something  else...so  look  to  related  conditions  like  Syringomyelia,tethered cord, ICP,POTS, Ehlers-Danlos.....

  Surgery  is  not  a cure it  is  done  to  restore  CSF  flow  and  slow  progression  of  symptoms.....if  her  CSF  flow  is  not  obstructed  decompression  surgery  will  not  help....but  if  she  has  a related  condition  that is  causing  the HA's  they  may  have  another option  for  treatment.....most  NS's  and  NL's  will  not  look for  these  other conditions..,.,so  a true  Chiari specialist  is needed....

Many  of  us  have  had  surgery  or  are  scheduled  for  surgery....as  the above  posted commented  it is  great  that  you are  such  a devoted  advocate  for  your  DW....we  all  need  the support  with  this  condition,  but it can  also  help her  feel  she  is not  alone  to join  us  here  as well...please  invite  her  to participate here....we  all know  and  understand how  she feels.

[baccalynnwv]

And thanks for advocating for her and joining a support group to get info from others who have been through this. I can not tell you enough what it is like to have a husband that supports you. I was told, in front of my husband, by a neurologist and a neurosurgeon, that Chiari was not causing my problems. I felt deflated and defeated and felt like I wasn't worth being a mother or a wife. My husband supported me and helped me get to my appointment to see an actual Chiari specialist and I actually feel like I have a real team to help me now. Chiari can make you feel horrible in every way - all over you body, and can zap the life right out of you. Exhaustion is not even a strong enough word for it.

So, help her as much as you can. Its greatly appreciated.

[baccalynnwv]

Hi and welcome!

She should see a neurosurgeon that actually specializes specifically in Chiari. There is a doctor list on this site for doctors that other members have seen and feel are honest and knowledgeable. If your neurologist is telling you the size matters as far as surgery, he/she is NOT up to date on Chiari Malformation.

Do a google search and/or check out CSFinfo.org. There is a wealth of information and many video's from leading specialist that explain your wife's condition.

The size of the herniation really does not matter. I only have a 4-5mm herniation. But, it is causing significant symptoms and CSF blockage. I am scheduled for surgery January 22nd.

I recommend she also keep a detailed headache and symptom log tracking when she had her headaches and to what severity. Do as much research on Chiari as possible and check out the other symptoms and conditions that are commonly seen with Chiari. Specifically EDS - Ehlers-Danlos Syndrome.

Keeping the symptom log helps give confidence when in an actual appointment. When the neurologist or neurosurgeon says they think your headaches are not frequent or severe enough, you have more ammo.

I can't stress how important it is to see someone who specializes in Chiari - we are talking as a main focus. Many neurologist and neurosurgeons will say they are a specialist, but really do not treat Chiari frequently enough to stay up to date with the latest technology and available studies. I had to travel 8.5 hours to find a doctor who actually knew accurate and up to date info.

Other tests to research and possibly request are a CINE mri and flexation series MRI.

Personally, my headaches are awful and have destroyed my quality of life. I force myself to work all day to help set a good example for my kids and help provide for the family. After work, I'm a couch potato. And that even hurts. Taking medications the rest of my life and chemically destroying my body - and still having no quality of life and missing my kids growing up - personally outweighs the risk of surgery for Chiari.