Has anyone had either at Mayo Clinic or Johns Hopkins?
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Anybody have an ogliodendroglioma?? If so could use some support!
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Hello @user_chea8a92a Nice to e-meet you here. I am Scott and my wife was diagnosed with an ogliodendroglioma when she was 49. While I don’t have the tumor, I am willing to share whatever I learned from her during her illness with it. I realize brain tumors are highly unique in how they effect individuals, but feel free to ask any questions you might have and I will share what I know from our shared experiences.
Peace & Strength
What were your wife’s deficits? Was her tumor removed or inoperable? Doctors say this type of tut can be maintained for decades! Please share any facts you may know !
Hi @user_chea8a92a Let me begin by saying we learned very early on the fact brain cancer is highly individualized. Each patient is unique as is their body chemistry, brain make up (my wife was left-handed and that made significant differences for her than if she had been right-handed, etc. I say this as a prelude to explaining her experiences since they were hers. Also I am not medically trained in any way so these are just observations, what she experienced, and what we were told.
Her initial deficits were having auditory, olfactory, and vision hallucinations followed by severe headaches.
In my wife’s case she chose to have a stereotactic biopsy, which resulted in a hemorrhage. This hemorrhage caused many deficits, but due to it she also had emergency surgery and had much of her tumor resected at that time. She overcame almost all of her deficits thanks to her OT and PT work. Those that remained were left-side deficits in vision, hearing, and awareness.
In my wife’s case her tumor was very, very slow growing for many years.
What she dealt with was unique to her and not all what one might call ‘average’.
I was diagnosed with AO3 (anaplastic oligodendroglioma grade 3) in Jan. 2015. In Jan. 2017 I had a Gamma Knife radiosurgery. I’ve been on Decadron for the last couple months to manage the effects. I am now down to 2 mg; due for another MRI in the next several weeks.
Glad to share or help if I can. Are you looking for specifics?
Wow it’s so nice to hear from someone with an ogliodendroglioma! Mine is in my left frontal lobe- wrapped around my motor skill area! I had a biopsy did one year of chemo which I finished last April – tumor shrunk 5o%! I have no deficits and MRI’s are stable but I just never know what to expect!
My wife’s was diffusely infused in her right frontal cortex.
To those of you who have been following my sister Jill’s journey, I have a question about Gamma Knife Radiation. Jill had all 3 tumors radiated at Mayo last Wednesday. One side of her head is still numb and she has been having headaches. She is also extremely fatigued. Has anyone else experienced these after effects and if so how long did they last.
Thanks again for all your support!
After sizeable meningioma discovered, craniotomy was performed September 2014. Pathology report came back as a Grade 2 (atypical). Since the tumor was located on the right side of my saggital sinus, it affected the left side of my body (happy to say that I’m probably 97% back to normal today) Unfortunately, MRI, January 2017, detected tumor growing back. Nueurosurgeon did not want to operate again. Recommended cyberknife treatment/surgery. Had treatment 22-25 May. Since then, I lost hair, only in the area of the treatment, but I had another seizure . Energy level is very low, bad mood changes due to seizure medication, I believe. Still haven’t recouped 100% usage of my left foot since the operation in 2014, but for the most part, I do very well. Has anyone experienced what I did? I’m still determined to “beat” this, but just curious whether this treatment improved anyone’s same condition and what symptoms did/have you experienced?
Hi Nici @tumorcyberknife,
Welcome to Connect. I moved your message to this discussion in the Brain Tumor group where members are talking about cyberknife vs gamma knife for meningiomas. Please meet @frit5 @nancye3 @fiddlemama @trudig and others. I’d also like to bring @pegorr and @lindajean into this discussion.
I think you’ll also be interested in reading these discussions as well:
– multiple meningioma brain tumors https://connect.mayoclinic.org/discussion/brain-tumors/
– Multiple Meningiomas https://connect.mayoclinic.org/discussion/multiple-meningiomas/
I urge anyone with a single brain meningioma to research Proton Beam Radiation. One of the Mayo Clinics has that treatment. I had it in Bloomington, Indiana 6 years ago with absolutely clear followup MRI’s every year since. When you research, pay attention to the Bragg Peak phenomenon – the radiation goes no further than the tumor (unlike the Cyber and Gamma Knife treatments) I am on Medicare with Anthem BC BS supplement and it was totally covered. My tumor was up against the brain stem. The linear accelerator in Bloomington was aging and that facility was closed. My husband and I refer to our time as “one of our best vacations”. I felt good the entire time.
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