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gramateri

Post brain surgery nerve pain

Posted by @gramateri in Brain & Nervous System, Jan 9, 2012

My 44 year old daughter had a pituitary brain tumor removed 10 years ago in Milwaukee, WI, and has had horrible electric-shock-type pain in her head ever since. She has tried everything, and been to three pain clinics and/or programs. She is on morphine and percocet and has never been able to return to work. She has been on disability for the past 5 years. She is now going to have electro-neuro-stimulator surgery in Oshkosh, where she lives, and I 'd rather she saw someone at Mayo instead. Can anyone help us?

Tags: pituitary brain tumor, electric-shock-type pain, brain surgery

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alexsimon

Posted by @alexsimon, Jan 13, 2012

Hi Grama Teri -
If you click on the "Request an Appointment" link on the upper right hand corner of your screen the appointment request process can begin.
Thank you

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gramateri

Posted by @gramateri, Jan 14, 2012

Thanks so much. We started the process, just waiting for a referral from a doc here. I appreciate your reply.

ellenwmorris

Posted by @ellenwmorris, Feb 13, 2012

Unless it's for insurance purposes, you don't have to have a referral from a doctor; you can refer yourself. My husband has a pituitary tumor and referred himself. We will be heading to MN in April.

247headache

Posted by @247headache, Jan 14, 2012

you should also check out peripheral nerve extraction surgery at georgetown university hospital with dr. Ducic. he may be able to extract the nerve in an out patient surgery.

Grama Teri likes this
gramateri

Posted by @gramateri, Jan 14, 2012

Do they do that type of surgery at Mayo? We can't really afford to travel as far as Georgetown. Also I'm not sure that they even know where the nerve is that was cut. That was just the reason they gave her for her pain. She, like you is in pain 24/7. It's so awful! I really appreciate your reply. Thanks so much.

sunnyinva

Posted by @sunnyinva, Apr 3, 2014

Grami Terri sounds to me like it could be nerve damage as I have. RSD. Does he have 24/7 headaches and burning. if so where is the burning I the body. Thanks.

247headache

Posted by @247headache, Jan 14, 2012

I think he may be one of only a few doctors in the United States that does it...not sure about the Mayo clinic. We are blessed to be within a few hours of Hopkins and a little over an hour from Georgetown.

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medicalfiend

Posted by @medicalfiend, Jan 16, 2012

Has there been a lot of loss of thought? Or any? I
Mean I might lose thought if I had this kind of pain, but maybe you should look
Up diseases like WM, because this kind of sounds similar. Just try to match symptoms 🙂

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gramateri

Posted by @gramateri, Jan 21, 2012

Hello Fiend, I don't know what WM is, sorry. I work in the medical field, but there are SO many initials for everything. Since my last posting, I am happy to report that my daughter had needle electrodes placed under her eyebrows and is wearing a nerve stimuator that was programmed with 4 different levels of stimulus. Her pain is completely gone! This is after 10 years of debilitating pain, and she will be undergoing the surgery to implant the device soon. We were told that this process has been used for nerve damage in backs for about 20 years, but has only been done for 2 years or so for head pain. The nerve stimulation works! Praise be to God.

kathig1

Posted by @kathig1, May 15, 2012

Ask to speak with Dr. Brian O'Neil at the Mayo in Rochester...he is amazing!

loretta61

Posted by @loretta61, Jul 12, 2016

My husband had a chiari malformation and had bad haedace all the time he under went surgery to allow more room for his brain. The doctor cut out part of the base of his skull. It only made his headace's worse but becides that he is a different person now! He acts different, doesn't remember stuff and his reaction to things so different than it would of been before! We were married 25 years before his surgery and now we have been married 35 years so i know the difference I wonder if there is anyone else this has happened to and if there is any way to change him back

loretta61

Posted by @loretta61, Jul 12, 2016

If anyone has any information about this kind of chiari malformation and surgery please share it with me

colleenyoung

Posted by @colleenyoung, Jul 12, 2016

Welcome to Connect, @loretta61. You may wish to connect with other members talking about chiari malformation here: https://connect.mayoclinic.org/discussion/chiari-malformation-type-1-20782d/ You'll meet @cynaburst @david33 @maidmarion @alicein_wonderland who have recently posted about chiari malformation surgery.

It must be so challenging to see and live with such a transformed person. How has your husband changed since the surgery?

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