What should I do?

[marci703]

Hi, have had bad headaches for about 40 of my 50 years. I was diagnosed  with pseudotumor cerebri about 30 years ago, but told it was resolved with steroids and a LP. When the headaches continued I was told I had chronic sinus problems. Had sinus surgery twice and allergy shots for years and still no relief. Started having migraine with aura and occular migraines almost 20 years ago.  Have been having many lately, one which apparently was the cause of TIA symptoms.  After TIA incident I had an MRI where it stated that I had a chiari malformation 1 of 7 mm consistent with MRI of 7 years ago.  (Eye dr. was convinced I had MS because of headaches and blind spot issues. When MRI showed no MS, she didn't mention the other items.) The MRI also said I had a partially empty sella - consistent, apparently, with pseudotumor.  I have also since been diagnosed by endocrinologist who treats me for hypothyroid with low cortisol.  I am seeing a neurologist who is trying to treat me with beta blockers and triptans. I was dealing with headaches with OTC pain meds and the occasional prescription headache pain pill. What is going with my head, what should I do and what type of doctor should I be seeing?  

[selmaS]

  Use the list to research Drs do not assume they are all specialists....this list is to give u a starting point....

Drs do not know much about Chiari as it was only found after someone passed,  and MRI's have not been used that long to DX symptoms like ours, it was first used to detect cancers and back when it was used it was very expensive so until they started to find more with the use of MRI's there was little recorded about Chiari unless the person was already deceased...

I think my first MRI was in the early 90's.....and I had issues back in the 60's....no MRI's back then....

Keep in mind Chiari symptoms cycle and flare, stress can cause a flare.....try to relax to help calm ur symptoms....and locate the Dr that is best for u....and while u continue to get testing get copies of everything, MRI, blood labs, and ALL reports....this will make going to diff Drs for opinions much easier.

[marci703]

Thanks, Selma, for all your help.

I feel like I've been wasting my time and just getting worse with the neurologist I'm seeing.  I also feel like I'm not getting the information I need to deal with these various neurological issues.  I wonder why so many doctors seem to know so little about these conditions.

I'll check the list and try to get an appointment with one of them.  I've read so many stories of people who have had CM for years and suddenly their symptoms go from manageable to life threatening in a short time.  I'm afraid I'm headed to that point.

You're a wonderful person to help so many people you don't know online.  Thanks again for all your help.

[marci703]

Hi, thanks for the response.  I have not gone to a NS (which I'm assuming means neurosurgeon) because:

1. - I don't know where to go. Even though I'm in a large metro area there don't seem to be a lot of chiari specialists. And the one I'm aware of does not take insurance (a real problem when you can't work and are trying to put two kids through college on one income) and has a ridiculously long wait time to get in.  I'm afraid the Neurologist will do permanent damage to me by then.  Is a NS who does not specialize in chiari better than a neurologist?

2. - I am afraid that all NSs will want to operate as a first option.  I really don't want to have surgery.  In addition to the fact that I just don't want brain surgery, from what I've read if you have both pseudotumor and chiari the odds of success are bad.   I also had surgery for a different condition about two years ago and ended up with a hospital acquired infectious disease that almost killed me.  I am very afraid of surgery and antibiotic use.

3. - My endocrinologist who treats me for the thyroid (yes, mine is Hashimoto's also) and is dealing with the cortisol and possible adrenal and pituitary issues is the best doctor I have.  Much better than the neurologist.  Of course, he won't treat the chiari, though.

I guess my question, after all this ranting, is "how can I find a chiari specialist within a reasonable distance to my home who will take my insurance, or am I better off going to a local NS who is not a chiari specialist but can see me in a reasonable time and takes insurance?"

Thanks for your help.

[selmaS]

  Hi and welcome to the Chiari forum.

A true Chiari NS is what u want to help u sort out all that is going on....many of us do have an auto immune thyroid condition called Hashimoto's thyroiditis...

There are several related conditions to Chiari u will want to rule out....and a Chiari specialist will help u do that.