My father (53 M) has a Glioblastoma at the junction of the posterior body and splenium of corpus callosum. He had a biopsy at Brown university in Rhode Island. Does anyone know a neurosurgeon who can safely perform a resection as the surgeons at brown as well as Sloan Kettering who we consulted with state that it is risky. We are hoping to find a neurosurgeon who can perform it without any complications.
Hi KR81
a warm welcome to the group. So sorry to hear about your dad's diagnosis.
A lot of the members of this community are based in the UK, myself included, so unfortunately can't comment on neurosurgeons local to you.
I did join a Facebook support group during my husband's GBM journey that were largely USA based so perhaps that may be another route to also explore here. If you are a Facebook user search Glioblastoma and the groups will come up. Most of them are private and you need to approach the admin to join but they offer a wealth of worldwide support.
This is a safe and supportive community so please reach out here anytime. There's always someone around to listen who gets it, someone to hold your hand and to offer a virtual huge when its needed. You're not alone. We've got you.
It’s always good to talk so please remember that you can also call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service provides lots of cancer information, emotional support, benefit and financial guidance or just a listening ear.
for now though I'm sending you a huge virtual hug and lots of positive energy
love n hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
Hi there and so sorry to hear of your father's diagnosis.
You can try asking on the Facebook forum Glioblastoma - GBM SURVIVORS TO THRIVERS! as there are a lot of experienced US patients and caregivers there. But as I understand, Brown and Sloan Kettering are proper institutions and if their surgeons are saying it's risky, that is probably the case, so be sure of the risks involved. Good luck
Hi, I am not good with the medical terms but my family member had a very complex first operation which lasted well over 15 hours in the operation room, to remove the main tumor and cleaning up as much as possible due to the location of his tumor growth. Which also originates in the splenium of the corpus callosum, but reach both right and left hemisphere as far as I know. Most surgeons, sorry let me correct, no surgeon in our City would operate on him at that condition, you are correct. The risk is too high. One amazing surgeon in Taiwan at NTUH (National Taiwan University Hospital) did it. He gave him 5 years before it all grew back..... Good luck on finding a suitable neurosurgeon!
I had a relative go through something similar, and we found a lot of support and info by connecting with people who'd had surgery abroad too. Someone recommended neurochirurg iasi for their experience with glioblastoma surgeries, and they were really happy with how things were handled. It helped to ask for second opinions even if travel was needed—it gave us more options and peace of mind.
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