Hi Peg, I totally agree that the docs try but sometimes brush off our concern/symptoms. My neurosurgeon said the Gamma surgery will "hopefully" stop the tumor from growing. I have another MRI in June. If it's growing, he said I may need regular surgery. You are so brave to have had two craniotomies and I don't blame you for not wanting any more. I dread brain surgery or any surgery as I have a compromised immune system. Oh well, we just have to keep going and maybe eat "dark chocolate"! This forum has helped me a lot. Jill walked me through the gamma surgery so I knew what was going to happen and it really helped me. Take care and please keep in touch- Joan

Hi Peg, I've had 3 craniotomies and I was more nervous for the 2nd and 3rd than I was for the 1st because I felt I was pushing my "luck". My first craniotomy was in 2001 to resect a 5 cm frontal lobe meningioma. I had it done where I live, in Altanta. My neurosurgeon felt I would be in the hospital for a few days and then recuperate at home. I ended up in the hospital for 3 weeks with fever and mind numbing headaches. Turned out that I had contracted an infection in the hospital in my cranial bone. I had another craniotomy to remove my cranial bone and then a 3rd one about 4 months later to put in a cranial plate. I've always felt so fortunate that other than losing my sense of smell and a few grand mal seizures from the meningioma, I made a complete recovery. An MRI in 2017 showed that I had two small recurrences. I had consults with two neurosurgeons in Atlanta, both with excellent reputations, but they each recommended a different treatment. That's when I self referred myself to Mayo in Rochester. The doctors I saw there were excellent and the neurosurgeon recommended gamma knife radiation. He said I could do a watch and wait but my husband and I felt more comfortable being more proactive. I've had mri's each year since then and they have not gotten any bigger, one is actually a tiny bit smaller.
Are you seeing a neurosurgeon at Mayo about what to do now? You most likely have already mentioned to your doctor about the smoky smells. Sometimes they don't mean anything at all and they just go away after some time but sometimes they are from focal seizures, tumors, chemo - all kinds of reasons for them. My neurologist felt I should have an EEG because I have a history of seizures. So there are many causes of phantom smells, but definitely worth consulting with your doctors.
I hope you will let me know your decision about your tumor. Please let me know if I can help by sharing any info about my own experiences. Best wishes, Jill