Awake Craniotomy?

Hello everyone. I am a newly diagnosed 28 year old. Originally the doctor who performed my MRI in the ER said I was having a stroke, as I was presenting with right sided numbness and facial droop. Long and behold I was seen by a neurologist who said it appears to be a glioma. She sent me to the neurosurgeon 2 months ago and now I am having an awake craniotomy as the tumor is growing. I am a bit scared as I just the thought of being awake frightens me alone. Has anyone else gone through this? Can you please share your experience? My anxiety and depression has sky rocketed and the seizures and language deficits have really interfered with my life. I am just a bit scared and am looking to connect with others who may be experiencing the same feelings of anxiety. During the surgery they will perform a biopsy to determine the specific type and grade. Guess this is pretty common to do the biopsy at the same time of resectioning?

Thanks Ya Guys!

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Hi K-
I don't have any experience with this, but I do have a good, authoritative website that might answer some of your questions...it is

http://www.hopkinsmedicine.org/neurology_neurosurgery/specialty_areas/ionm/ types/intraoperative-brain-mapping.html

Awake craniotomies have been practiced for years, but are a rare surgerical alternative used only in certain circumstances. Sounds like the neurosurgeon is adopting this technique in order to prevent damage to your healthy tissues.

Your fear over this is completely understandable; I know of people who have to be put to sleep to have their wisdom teeth extracted. Brain surgery is considerably more serious. I recommend talking to your neurosurgeon about your fears.

Also, I would talk to your neurosurgeon about your seizures; an adjustment in your seizure meds could go a long way to handling those.

On the biopsy thing..once they get any part of the tumor out, they will run a pathology test on it to determine what exactly they are dealing with so that they know better how to treat you. It may take them a couple of weeks for the final pathology report to be issued. Classifying brain tumors is tricky business and they want to be sure so that they can figure out how best to help you.

Meanwhile, there are things you can and should do to take care of the 99.99998% of your cells that are healthy like exercising sensibly and safely and eating right. The better your condition going into surgery, the easier it will be on you and a little exercise can help reduce the feelings of anxiety. Plus, your original presenting symptoms (right side numbness, etc.) can possibly be alleviated over time by exercise. I have a friend who suffered a massive brain bleed ~9 years ago when she was 34 and who was given a 20% chance of making it for weeks. She fought through the paralysis and other side effects with physical rehab and exercise, and has very limited deficits today.

You can have peace and victories in this. Keep reaching out and asking for support. We're all on your side and praying for you.

All the best,
Jana

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Dr. Hersonskey Tamir (Neurosurgery)
Phone: 815-741-7145

Mar 2008: I underwent surgical awake resection craniotomy of the lesion on March 19th 2008

Aug 2011 : There was no recurrence of tumor for these 2.5 years. Mar 2nd week’s MRI was clean and Jul 1st week’s MRI shows recurrence. I am undergoing awake-craniotomy with speech mapping to remove tumor and cyst that formed in my left side of brain. Surgery is scheduled on 19th Aug 2011 at Provena Saint Joseph Medical Center - Joliet.

www.inspire.com/jeanmathew
-Jean

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Jana-

Thank you for the wonderful resource! I found it to be very informative. I thank you for your advise. I am walking daily, however, I cannot resume regular exercise until after the surgery and I am cleared as they do not want me to exert myself. However, I do get out and walk rain or snow (Im in Washington:). I leave next week to California for my pre surgery labs and await the surgery.

Kimberly

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Jean,

Thank you for sharing your experience with me. I looked at your profile and its so familiar as I too have a left front temporal-parietal tumor that is about the same size. I often experience speech disturbances during seizures and have developed a stutter that I never had previously. It gives me hope and peace knowing that others are also fighting the same battle. Thank you!

Kimberly

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Kimberly: While you may live in Lakewood, WA.; I live in Seattle, WA. I attend a 'BTSG' [Brain Tumor Support Group], which meets on the First Wednesday of the month at the University of Washington
Medical Center.

There are several members that attend, that live in the South End.

There is also a 'TBI' [Traumatic Brain Injury] group that meets at the 'TACID' Center in Tacoma.

I requested YOU as a friend. 'Friends-Only' can find my email address on my 'PROFILE'

oyvey/Jacqueline

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K: An awake craniotomy is usually done to prevent damage to healthy surrounding tissue. It is often
referred to as "Brain-Mapping".

The neurosurgeon might ask you to 'move' (a finger, for example) something; or 'say' something --- so that he/she knows when [he/she] has gotten too close to the 'speech' or 'motor' pathways; and can 'THEN' back-off.

EMAIL me when you have a chance; and I can tell you about OUR local Resources.

oyvey

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I had one done in 2/10. A couple seizures here and there but no growth of the tumor. I don't remember a thing during the operation, my Dr. said I'd wake up with a headache and really bad hair, both very true. Oh, oligodendroglioma Rt. frontal, temporal lobe.

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Dear K Jones,

My full situation/experience with my brain cancer and tumors (two tumors) is in my profile, but in a nutshell, due to one of my tumors being in the left temporal lobe (stage II oligodendroglioma), in such a delicate position (the "speech center" of the brain), I had a consultation with a speech pathologist prior to my surgery, and he was with me in the O.R. so that I could describe pictures he was showing me while the surgery was ensuing, because then the neurosurgeon would know, from an additional perspective, if and when he had to "back off" if my speech became garbled, etc. (During my initial workup when brought emergently to the ER after a grand mal seizure, a stroke and epileptic activity were ruled out. No other suspicious areas in the body, just within the brain). Only 25% of the tumor was resected, as if more was removed, I would never be able to speak again, possible short and long-term memory loss, vision, bladder, and gait issues. When I have had seizures in the past, I, too, have had very nonsensical, garbled speech. I was awake for the crucial points (natural movement of brain material to be aware of during intervention, location of tumor, and neurosurgeon's plan are just some of the cautionary paths to be monitored during any procedure involving the brain.

During and after the brain resection, I felt great. The entire medical staff were truly very nice and treated me as if I were the only patient they were involved with. I was never with any degree of discomfort. The surgical pre-op team were hard-pressed to try to contain all of my hair within a surgical cap, to lend itself to a sterile environment before the surgery began, but I have tons of hair, very thick, and a few days post-op, it was nice to eventually have the first shower for which I could wash my hair as usual.

I did, unfortunately, have cancer when the biopsy results became available, and my other tumor is too deep to consider a resection (lateral to my pineal gland) - more of a mystery. The surgery took place on September 7, 2010. My tumors have remained stable currently, and I receive MRIs every three months currently, did a year of chemotherapy (ending in October 2011 with Temodar - no radiation), and take Keppra 2,000 mg total daily to prevent seizures. I am doing what I have always done, living and enjoying my life, and managing my cancer is now part of my life which I accept and deal with.

Everyone's feelings and approaches to their diagnoses are different, and from the get-go, I was tenacious about being responsible, proactive, communicative, prepared, realistic, but thriving and happy - feeling well and strong, and grateful for this.

I could ascribe my personal cancer management to having on that "invisibility cloak" that Harry Potter sometimes wore, this comforting, strength factor that is a part of me, of whom I am - no props.

I send you long-distance hugs and support. If you get a chance to read my full profile, I hope it helps you to deal with your situation from your own personal perspective. The communication on this site and what we give and receive through family/friends, for example, gives us strength.

Please take care of yourself. :)

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Thank you oyvey! I was just looking into support groups yesterday. Ill send you an email.

Also thank you 262runner and Debra2010! Sharing your experiences with me truly does help and provide comfort in knowing others are out there enduring the same life circumstances.

--Kimberly

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