After seeing CM specialst

[Rach68]

Hi cant believe I havent posted since Feb.but here goes!I have been having constant headaches for nearly a year now and was diagnosed with a 11mm herniation but all the drs I've seen including Dr.Batzdorf at UCLA dont believe my headaches are caused my my chiari malformation,Ive had various MRIs including a full spine and a cine MRI which showed partial blockage especially at the back of my head.Ive tried many different meds. including Tomopax and different anti depressants,currently Im taking zoloft and tramadol(200mg a day)but nothing has worked.Dont know what to do next!!

[selmaS]

I am doing pretty good. I am so  glad I had it done.I do have a journal on my profile page descibing the whole thing...as I remember more I have been adding to it.

The meds afterward take u on a trip where the memory gets distorted....lol....

I did too much walking today and have a little headache, but nothing like I used to get...so I am taking it easy the rest of the evening.

"selma"

[Rach68]

Thanks I just read you had surgery How was it?How are you now?

[selmaS]

Hi Rach,

I have to say yes to the headaches intensity cycling......and traveling in diff areas of my head....mostly neck and back of head, but it did move.

I do hope u have a chiari specialist to get ur other opinion from.

Good luck and do let us know what u decide

"selma"

[Rach68]

My Neurologist finally changed her mind this week after a year of trying different meds.and said maybe my chiari is causing my headaches!!She said "you might as well have the surgery"like it was a teeth cleaning!!
I'm doing another CINE MRI on the 6th July and going to a headache clinic for another opinion on the 26th July.
Anyone else with chiari headaches can you answer a few questions for me do your headaches come in cycles I seem to have constant headaches but every couple of weeks I have about 4 days of really bad headaches,and my headaches also move from day to day,front of head ,back of head sometimes my face and does anyone else have occasional nausea?

[selmaS]

Hi Rach,

Yeah...I had alot of the same type of explinations about the HA's and Rebecca is so right about everyone having a different type of HA it is diff for these drs to classify what a typical chiari HA is.

One Day...we will have more well informed drs and they will be open minded and listen to us!! : )

One Day....

"selma"

[youngwife]

I think that maybe because they aren't "classic" chiari headaches, he doesn't think they are related.  But, each person is different.  If you have seen an ENT, and he can't find a cause, then it would seem to be the Chiari.

You could have pressure from CSF pooling.  My daughter hurts soooo bad that she takes my elbow and smashes it against her forehead sometimes.  Other times, her head is too sensitive.  It just depends on the day.  Usually, she has continual pressure and pain in the back of her head to some degree.

I hope that the new CINE will prove to be profitable.  But, in the meantime, it might be a good idea to contact another Chiari specialist, and at least let him look at your MRI for an opinion.  Even if it is just via email, it would help you with a starting place.

HTH!

Rebecca

[Rach68]

thanks Selma yeh I guess I may gave to find yet another dr.at least when I get the next cine I'll be able to understand what's going on and how it compares to the one I had done 6 months ago

[selmaS]

Hi Rach and welcome back!!

Sorry to hear u r having issues and still being ignored and by a dr that is to be a chiari specialist.

I agree with Rebecca, get another opinion.

I pray the Cine helps, but keep in mind, u may need to find another dr to work with.

Glad to see u again!!

"selma"

[Rach68]

thanks for the support!my headaches seem to move but 75% of them are located at the front of my head  between my eyes and even on my face next to my nose!!I do have orders to have another cine MRI 6 months after the last one so that would be coming up soon hopefully from that my chiari will look more"relevent" and my NS will take some notice!!!

[youngwife]

I agree.  You should not give up.  I can not believe that a Chiari expert would say that your Chiari (11mm at that) isn't causing your problems!!!

Contact Dr. Rosner in NC.  He can help you.

[lilpuddlejumper]

Just curious, where are your headaches located? Prior to my surgery, I had headaches daily in the back of my head and neck. I visited my PCP to discuss the headaches (and concerns that I may have an aneurism due to family history), where she recommended an MRI. I received a phone call days later referring me to an NS, where I was diagnosed with Chiari I, 14mm herniation. Due to the location of my headaches and frequency, he advised I could either opt for surgery or attempt medicinal treatment.

I'm not a big fan of taking meds, and elected the surgical alternative. If you are uncomfortable with the information your doctor is giving you, I would highly suggest seeking another opinion or getting in touch with a Chiari Specialist.