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More frequent and intense "ice pick" pains. Normal?

Posted by mimispree @mimispree, Mar 28 2:52pm

It's been 9.5 years since the resection of a brain stem tumor, probably a trigeminal schwanoma. Two pieces of the tumor on the brain stem had to remain. For the last 6 months I have been experiencing very intense "ice pick" pains much more frequently. They are so bad that my paralyze mouth moves during the attacks. They are worse than before my resection. I an wondering if this is common. Thank you.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Apr 3 4:56pm

@mimispree, I can imagine that you're concerned about side effect getting more and more intense. It certainly warrants further investigation. Have you talked with your doctor about it? Are you still being followed by your neurosurgeon or by your PCP?

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1 reply
mimispree | @mimispree | Apr 4 1:21pm
In reply to @colleenyoung "@mimispree, I can imagine that you're concerned about side effect getting more and more intense. It..." + (show)
@colleenyoung

@mimispree, I can imagine that you're concerned about side effect getting more and more intense. It certainly warrants further investigation. Have you talked with your doctor about it? Are you still being followed by your neurosurgeon or by your PCP?

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Thank you for your reply. Unfortunately, I could only afford one MRI at five-years post resection: I couldn't get insurance for two years, and I had a graft surgery for my facial paralysis where the surgeon left a sponge inside me; and due to my vertigo I took a bad fall that required surgery. These events cleared out what savings I had left.

I did find out at that 5-year MRI, that there are two small tumors still on my brain stem.

I wonder if it's growing because when I move my head, I have pain at the tumor site. I guess that's to be expected.

I cannot and will not have anymore surgery, so I haven't seen the value of getting another MRI. Because of this, my surgeon isn't willing to consult with me.

I accept that, but the attacks are disconcerting and I wish someone would tell me what I can expect. No one will answer that question. I feel I am being punished because I have opted not to have surgery again. But after almost four months away from home because of a botched surgery, facial paralysis, and several ripple effect surgeries, I'm done.

Can you direct me towards any information as to the path I'm on?

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Apr 8 9:09pm
In reply to @mimispree "Thank you for your reply. Unfortunately, I could only afford one MRI at five-years post resection:..." + (show)
@mimispree

Thank you for your reply. Unfortunately, I could only afford one MRI at five-years post resection: I couldn't get insurance for two years, and I had a graft surgery for my facial paralysis where the surgeon left a sponge inside me; and due to my vertigo I took a bad fall that required surgery. These events cleared out what savings I had left.

I did find out at that 5-year MRI, that there are two small tumors still on my brain stem.

I wonder if it's growing because when I move my head, I have pain at the tumor site. I guess that's to be expected.

I cannot and will not have anymore surgery, so I haven't seen the value of getting another MRI. Because of this, my surgeon isn't willing to consult with me.

I accept that, but the attacks are disconcerting and I wish someone would tell me what I can expect. No one will answer that question. I feel I am being punished because I have opted not to have surgery again. But after almost four months away from home because of a botched surgery, facial paralysis, and several ripple effect surgeries, I'm done.

Can you direct me towards any information as to the path I'm on?

Jump to this post

@mimispree, what to expect is a tough question to answer even for the doctors who are familiar with your case. You say you are 4 months away from home. Are you being cared for away from your home?

REPLY
joesimmons | @joesimmons | Apr 9 7:13am

I have Grade 2 glioma/astrocytoma. Done the six weeks of radiation, and six cycles of chemo pills. I get terrible electric pin-prick jolts in my foot. Very annoying.

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