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Old 08-24-2012, 01:01 PM #1
sm_warren sm_warren is offline
New Member
Join Date: Aug 2012
Location: Southern California
Posts: 1
10 yr Member
sm_warren sm_warren is offline
New Member
Join Date: Aug 2012
Location: Southern California
Posts: 1
10 yr Member
Default 9+ years after colloid cyst removal -

Hello Everyone,

I am now 9+ years post colloid cyst removal, and am glad to have found somewhere where I don't feel like I am a freak because I have crushing, debilitating headache pain. I don't know about the rest of you, but on the surface, I think I probably look a little too normal for what I actually feel like.

My cyst was removed in a 5 hour endoscopic surgery. My surgeon was nearly ready to give up part of the way through, and open up my head because the cyst was so difficult to break up and pull out.

The headache pain that had started a few months before the surgery never really went away. My original neurosurgeon did not thing that a shunt would be effective in relieving the normal pressure hydrocephaly that I was enduring.

We got another opinion and found a doctor that thought a shunt would help. He put in the first one. I developed an allergy to the silicone which the shunt was made of. That shunt was in only a few months. He then replaced it with a specially made silicone-free shunt which became infected post-op.
Since I had these two problems, the doctor would not put in another shunt.

I went through all of the available narcotics that the pain management doctors could think of. I even went to a headache specialist and tried some migrane medicines. Although the narcotics helped to numb the pain a small amount, the side-effects they had on my mood and body were not worth the benefit. After a year of titrating down off of the narcotics, I have been completely off them now for about 7-8 months. The pain is a little bit worse without them, but I am more clear-headed and present.

I am now using "alternative" forms of treatment, such as neuro-feedback, acupuncture, massage, herbal medicine etc. Although they help briefly, they have not taken the pain down.

I am looking forward to the support of this group, and am hoping to cross paths with a neurologist and/or neuro-surgeon who has some helpful advice.

Thanks for listening.
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