Chiari Online Support Group

New Here. Looking for Support


#1

Hello Everyone!

I’m glad I found this site. It’s been quite a journey. I am 31 years old. When I turned 30 I started having numbness in my legs and back pain. Low grade full body tremor. Occasional headaches.

CM-1 was found on MRI. 14mm herniation. The PA that I saw stated that my symptoms were not caused by the CM. She referred me to a neurologist. He said the same thing. He was stumped.

Over the past year I began having headaches. They are about a week long. Occipital. A day of occipital neuralgia too. That is when it’s at its worst.

I decided to go to Mayo Clinic Rochester. They did an EMG for the leg symptoms and it came back clear. They didn’t do anything else. Due to the onset of symptoms happening after a very traumatic experience, they gave me a diagnosis of Conversion Disorder. Referred me to psychotherapy.

I’ve done psychotherapy and the paresthesia did not subside at all.

Finally decided to go to a chiari neurosurgeon. Fantastic guy. He stated the headaches were definitely chiari. He said to treat the symptoms of the headache, try to minimize stress, and come back to him if things get worse.

I am not sure what he means by worse. I should have asked, but the pattern of symptoms seems to follow a cycle.

Every few months, I feel very stressed. Then the headache starts. I don’t need to explain how bad the headaches are. Then tinnitus. This lasts a week and is very debilitating. During this time I have sleep problems as well. I’ve noticed I become depressed and (apologize for being to straightforward) but I have noticed that during this time when I am intimate with my partner, I have orgasms that feel incredibly weak. Almost nonexistent. Maybe because of how I am feeling?

To manage the headaches during this time, I take OTC NSAIDs, cold compress, and just try to get my stress down.

Thank you for reading this. Sending love to you all.


#2

Welcome to the Chiari site. Hopefully you can read lots and find the information that you need.

i would like to speak to the cyclical nature of symptoms as I can definitely relate. The head aches combined with sleep problems, mood alteration, weak orgasms, and I would like to add incontinence. I have for sure noticed a change in pelvic floor tone during these times both before and after surgery.

In the incontinence literature, there are references to a stronger pelvic floor improves the orgasm experience. Unfortunately, to date, I have been unable to make changes to my pelvic floor. I had the chance to speak to a skilled pelvic floor physical therapist who had some ideas on treatment.

  1. Neurodynamic exercises with small excursions working up to strong wind-up involving the leg, back and neck into the arms (exercises that move the peripheral nerves through their range of motion). This is more to head off the headache and corresponding muscle tone changes (mood… sleep…). I truly wish that I had known about this before I had the decompression surgery.

  2. Graded motor imagery for the pelvic floor so that your brain knows all the parts of the pelvic floor. Sometimes with Chiari, the brain can have a faulty relationship with the body. Google it up - fascinating stuff.

  3. Pelvic floor strengthening and endurance. In the past, this is where I always started. I would make a little head way then have the experience with the headache and other symptoms. My pelvic floor would bottom out then be back to where I had started. Very frustrating.

I have not gone through the treatment outlined above for the pelvic floor as I am currently focusing on other rehab. However, it is on my list to do and I can answer any questions.