One patient with glioblastoma still alive nine years later
by I_love_Gary on Thu Apr 30, 2009 12:00 AM
Until recently, reading the posts on this site, I didn't realize that a parietal tumour location was frequently seen as inoperable. My husband's GBM is in the right parietal, and the surgeon did not seem reluctant at all. He did tell us that there was a great chance of loss of function of the left side of his body, and I know that was a consideration in the decision, but my husband said, "you get that thing out of my head, and I'll deal with the left sided weakness". That was his take on the problem. I don't know if he really expected to wake up completely paralyzed on the whole left side, but that is what happened. The surgeon was so apologetic, but within days, he was wiggling toes, fingers, then moving the arm and leg, and in a couple of weeks he was starting to walk with the therapists. He will not allow anyone to talk about prognosis in his presence, and he will not accept that his disability is not improveable. He made remarkable progress in getting back to mobility and self care, in the month of post op rehab, but he has lasting deficits that no amount of therapy will correct. He needs help with a lot of daily activities. but he is alive. He would do it again. He is getting back this week, to another course of rehabilitaion. It's been 2 years on May 1st, since his surgery. MRI's have been clear. Another is coming a week from tomorrow. Life in 3 month increments.
This is my question. How many of the readers on this site have the parietal tumour, how many were refused surgery, and if surgery has been done, what are your deficits? If you lost the use of your one side, does that mean you would not do it again? When the tumour is on the left of the head, there is also communication losses to go along with the right sided weakness. That has to be harder to deal with.
Donna L [surprised]
by Fellinghelpless on Thu Apr 30, 2009 12:00 AM
by Glio_Wife on Thu Apr 30, 2009 12:00 AM
This is such a great thread! One of my husband's tumors is in his left parietal lobe. Doctors have not recommended surgery for him, because his tumor is very near his motor strip. The only symptoms he has are milde focal seizures and numbness in his right hands. Because he is doing so well, the doctors don't want to risk him becoming wheelchair-bound. We were told that the more mobile you are, the better you will respond to treatment and the better your attitude will be.
This is such a great thread! One of my husband's tumors is in his left parietal lobe. Doctors have not recommended surgery for him, because his tumor is very near his motor strip. The only symptoms he has are milde focal seizures and numbness in his right hand. Because he is doing so well, the doctors don't want to risk him becoming wheelchair-bound. We were told that the more mobile you are, the better you will respond to treatment and the better your attitude will be.
by predisposed on Thu Apr 30, 2009 12:00 AM
Ted Kennedy had GBM in the left parietal lobe, went down to Duke and had it removed.
From what I've read, there seems to have been some doubt among the doctors about whether or not surgery helped the patients live longer. Although I was under the impression that thinking was passe, should treat the patients with surgery if possible.
The motor strip controlling movement is in the frontal lobe, not the parietal lobe.
I've not seen anything saying the doctors couldn't operate on GBM in the parietal lobe. Mine was in the parietal lobe and it's been removed surgically.
You asked about post op deficeits.
Memory is problem. Not a real big problem, but I do forget things.
by SandyPie on Thu Apr 30, 2009 12:00 AM
This is really a good communication. My husband was diagnosed with the Frontal lobe, Glio tumor in too deep to do surgery on 9/5/08. He only had weakness in the left face and a little in the left hand. We saw a neurologist and a surgurial neurologist at Mayos, they said in tto deep too risky can not remove. My husband also said "I want this thing out of my head." On 4/2/09, he had two major seizures and the left arm went completely non working, then on 4/12/09 totally use of the left arm, 4/22/09, Neurologist said still too risky to do surgery as it may totally parazled him. 4/28/09 we met with an onlogists at Mayos for the first time, he looked over everything, pulled a surgeon in, the tumor has grown from 2.2 cm to 3.2 cm and grown from deep within to just below the skull. The Surgeon said, he can get to it now, his hopes are my husband may still not have use of the arm, but hopes to get all the tumor. The tumor is laying on the motor cord, but with the previous radiation the hope is that the outer layer of the tumor is dead tissue and will not grow back. Today, my husband is starting to lose sensation in the left foot. The doctor told us that my husband will most likely get full use of the leg and his left side facial features.Surgery is schedule for Tuesday. So, there is hope for those tumors they tell you are inoperable. I did not know this and thought this decline was not going to end well. Praise God. My husband asked the surgeon why did you not go in early? He replied, you would not have like me much if I had paralzed your left arm 6 months ago. Because that is what would have happened.
by mbg53 on Fri May 01, 2009 12:00 AM
by madonnav on Fri May 01, 2009 12:00 AM
My husband has a very small enhanced area 3mm in his left pareital lobe seen after his initial diagnosis and biopsy. His inital tumor was deep near the medial right temporal area near the hippocampus-only a small resection more like a biopsy could be done. He also has a left frontal area of concern they call it - looks like necrosis. He did 6 wks. rad/tem, 2 rounds of temador 5/23 so far and we meet with the Brain Tumor Team at Jefferson in Phil., on Monday again 5.4 - yes life in intervals. So far they just ask him questions on how he's feeling. He has no balance issues to date, no numbness, short term memory issues, can't multitask. He actually was laid off during this entire ordeal until today, he was called back and we will see how he does working along with someone, he is an electrician. The NS or NO never mentions operating on either the left parietal or left frontal lobe so far and I didn't question that but I will. However, Rob has said NO more surgery. I don't know what will happen next as do any of us. I just pray for all of us. Everyone on this board tugs at my heart and I am sorry we share this journey.
Sandy Pie, Will say a pray for the best outcome with the surgery.
Donna, w/o Rob, 45, dx 12/08
by Glio_Wife on Fri May 01, 2009 12:00 AM
It is quite obvious that everyone is different when it comes to brain tumors. Although two people may have tumors in the same lobe of the brain, one might be operable and the other might not be. Just because one person had surgery in the region does not automatically make it safe for another.
I believe that Ted Kennedy had a debulking surgery, not a complete resection.
The frontal and parietal lobes of the brain are close to eachother, so it is possible to have a tumor mainly in the parietal lobe that extends somewhat into the frontal and lies near the motor strip.
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