Update on My Wife

When we last talked about my wife we were going to see a new neuro and get a cervical and spine MRI to check for CSF flow after meeting with a Chiari NS at the Cleveland Clinic who did not believe her Chiari was causing her headaches, neck pains, or tingling and numbness. Well the new neruro did a thorough exam and said he wanted to see the results of the spine and cervical MRI, and also referred her to a vascular NS to see if her small cavernous malformation could be causing problems. MRI went well with good flow everywhere and he even discounted the previous Chiari finding due to head position. And stated that she had good CSF flow throughout her spine and lower skull. Good news chiari-wise.

We met with the vascular NS and he was adamant that her tiny CMF was not causing any problems. He even said if it was 10 times bigger it still wouldn't be a problem. Aside from being very small it is located in a area that would't be an issue for her symptoms as he called it "low value real estate." He was maybe the best doc I have even had the pleasure of meeting. Hopefully I won't ever have to talk to him again.

When she saw the new neuro, she was having terrible headaches and neck pain. He examined her and felt that her shoulder and neck muscles were agitating the occipital nerves with were likely contributing to the headaches. Also she was self-medicating with OTC pain meds that were likely causing rebound headaches. All of this was a vicious cycle that never stopped. He gave her 10mg of AMITRIPTYLINE to take once a day (and stop the OTC stuff) and she was out on her back for 3 days with wicked headaches and neck pain, then after another few days her headaches and neck pains are almost non existent. That is good news. She is schedule for PT with a doc who specializes in headaches, neck, and spine issues next week.

So that kinda puts us back to square one, with some things being crossed off the list, at least for now. She has had a million blood tests that all seem to be read as normal. She is scheduled for an EMG and another appt. with her neuro in March.

Her symptoms are a little different now. Occasional mild headache (not at the back of her head), and almost no neck pain anymore. Her biggies are tingling and numbness in her left foot from her toes to her knee ( sometimes causing pain), in her left hand from fingertips to her wrist (usually), and once in a while on her chin. Stress tends to make any of these worse, including causing the headaches to worsen.

When this is all done, Chiari may not be the cause, it may be some other disease or disorder (MS, Lyme disease, or even something else), maybe stress or anxiety induced, or maybe a combination of things, or maybe it will end up be nothing that they can find at all.

Unfortunately, being the researcher I am, I keep reading about MS and it is very scary. MS is a big bucket with a million symptoms that are different for every one. There is no one symptom that is MS-specific just as there is no MS test to take. Good news is her MRIs with and without contrast show no lesions (a big red flag for MS), or other abnormalities, and she hasn't had any of the more classic MS symptoms (vision problems, balance, weakness, coordination, cognitive, etc...) The other good news is that she has all this testing already done and she is on the path to finding the cause, no matter what it is. Hopefully that will pay dividends in the future if these issues don't resolve themselves.

I will keep updating as appropriate, especially if this all turns toward chiari again. Given the options, I would prefer a health problem that can be solved by a surgery.

Best wishes to all!


thanks for the update. let us know about the EMG..that will tell a lot.

you are so right about Chiari not being the real issue....that is why it is so important to rule out other things...such as Lyme and MS.

glad you posted...keep us in the loop, ok??



sometimes getting to the root of the cause is the hardest thing.....you seem optimistic and thats a good thing, glad your wife is feeling somewhat better. and you really seem to like that doctor. Wishing you guys all the success. Most defidently OTC's can cause rebound headaches and he is right very bad cycle to be stuck in,glad he put her on something to get her out of that cycle. ~Lisa