It's Just Benign: Connecting Benign Brain Tumor Survivors Everywhere

post-biopsy follow up

In April, I had my first follow-up MRI. Unfortunately, I had to go with another neurosurgeon as I found out that my original neurosurgeon is not within my insurance provider network. The first neurologist I ended up seeing to get the results of my follow-up MRI to see if anything's changed did not work out unfortunately. So I made an appointment to see another neurosurgeon whom I met last week. For this first follow-up the best news would be that the temporal-parietal lesion has not grown and that the splenium lesion would have reduced in size.

The neurosurgeon brought up the MRI scans on his computer and we went over everything. I hold him how the operating neurosurgeon believes the temporal-parietal lesion to be a hamartoma. After looking at and considering everything, he told me that in his opinion, it's not a hamartoma, and that as it stands, it is inconclusive as to what it might be. Looking at my follow-up MRI, he pointed out that the area in which the samples were taken were from the upper portion/fringe of the lesion instead of in the middle. He felt that this may have been the reason why the sample taken seems not very definitive. He ended up recommending that I have an open biopsy done to remove up to about 75% of the lesion. Or course I indicated to him that I very hesitant about this. Just from my first biopsy which was relatively non-invasive, it's taken me awhile to recover, and I still don't feel fully all there. I can only imagine how it will be after this recommended procedure, one that I really don't want to go through. Luckily, as it seems to be slow growing, I've decided to seek an opinion from UCLA neurology as it's only a month away. It was suppose to be my 2nd opinion for which I had scheduled back in late February, but now has become the de facto third opinion.

Anyway, since this whole thing has started, it's been kind of difficult to cope with things. I've found focusing and concentrating on tasks hard to do. I don't know if the biopsy is the cause of it or just the lack of sleep from worrying about everything, but I have noticed that my memory has gotten just a tad worse, and that I've been having a bit of trouble with conveying a clear and concise thought. At work, over half of the time, my mind is just wandering and racing at times thinking about a possible ticking time bomb in my head. I've tried to put on a brave face and act like my normal self, but in truth, I know nothing is normal and I'm not the same person. It doesn't get any easier because I am a person who internalizes everything and sure enough, I haven't really spoken much to people about anything really because I don't want to burden them with my problems. When I have reached out, it's hard too because they don't exactly know what you're going through. I don't know if it's the right approach, but I feel like this is a journey I am to take alone. Well, I am anxious to see what UCLA neurology has to say and to see if an open biopsy really is needed. I hope not, and I hope an alternative can be found.

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Comment by John on June 4, 2011 at 3:40pm: Thanks Amber for the referral. You definitely need to find a doctor that matches your needs.

Comment by Amber on June 4, 2011 at 1:22pm: I just want to throw it out there that if given the chance I wouldl see if your insurance would let you go to Dr. Kelly at St. John's in Santa Monica. WONDERFUL surgeon in my opionion! He went in through my eyebrow and you would never know it..surgery was as non evasive as brain surgery can be. I just found out that he is the one that performed the brain stem surgery on the NFL player in the news (Eric Leaf). Goo luck on finding a doctor that works for you and you are comfortable with. You need to like the person that digs around in your noggin!

Comment by Becky on June 2, 2011 at 10:23pm: John - I messaged you about the UCLA doctors. I don't want to talk badly about a doctor publicly; some people may have a different opinion, that was just my experience.

Comment by John on June 1, 2011 at 2:04am: Beth - Thanks, I hope it goes well too. I am not sure what going well will entail, but hopefully, it will give me a definitive path for the time being. Also, hoping that I can connect with some people here as well. My family have tried to be as supportive as they can be, but in a way, they've been in denial as well. I know it's been hard on my folks especially.

Becky - Thanks for the reply and some insight regarding UCLA. If you don't mind, who was the neurosurgeon that you saw at UCLA? I'm scheduled to meet with a neurologist named Jeremy Cholfin. You're right about us having to be our own biggest advocate and that doctors will be a big part of the foreseeable future and that it is important to pick the right one. I'm glad you've finally found ones that you're comfortable with and have confidence in.

The lastest neurosurgeon seems to be good. He really took the time to go over everything with me and explained things well. I am just not sure about his recommendation for the open biopsy, however I guess that's what second opinions are for. Although, It is a good sign with him being so open to me seeking another opinion. I know that isn't always the case.

Comment by Becky on May 30, 2011 at 11:24pm: Hello. Sorry about everything. From experience, I would see as many doctors as it takes until you find one you are comfortable with. My first neurosurgeon was great, but once things got worse, he was not comfortable performing the biopsy. It's not my intention to put down UCLA, but I did see a neurosurgeon there who was supposed to perform the biopsy, but was extremely rude. He had this God-like personality. He told me nothing was wrong, all of my symptoms were in my head, and that I was just drinking 6 liters a day because of stress. Turns out, it all was the tumor, and the excessive thirst was caused by diabetes insipidus, a hormone deficiency because of the location of the tumor.

I am now at Cedars-Sinai, and love my doctors. I had only had one appointment with my neurosurgeon there and he recommended a biopsy be done in less than a week. But I was ok with this - he made me feel comfortable, secure, and like it was the right choice. My neuro-oncologist there is the same. Having doctors you are comfortable with makes everything so much easier. I actually just got done going back and forth from different neuro-opthamologsts. Finally found "the one" last week. In fact, the one I saw at UCLA blamed my double vision on stress, as well. Though I do have the best neuro-endocrinologist at UCLA, so it's not all bad. You just have to be your own advocate and find who you are comfortable with. If you don't like a doctor for any reason, find a new one. Since doctors are now going to be such a big part of your life, you want them to be good ones that you are comfortable with.

Best of luck.

Comment by Beth Rosenthal on May 30, 2011 at 11:28am: Hi John. I hope that you have a good apt. with this 3rd neurosurgeon. We all understand the isolation with this journey. I was diagnosed in 1986 and no one asked me how I was post-treatment. I looked normal and that was good enough for them. My peers were 12, so I understand them. But my school didn't educate them. And my family (except my mom) wasn't there either. It's bad enough that they don't understand, but it's even worse when you don't feel like your feeling are validated. Starting this site has been so incredible for me. I'm not over my anger regarding many issues, but I now don't speak only about my experience. I speak and educate about all of our experiences. We are all here for you and can connect with your feelings. Perhaps you can connect with a member who's local to you. Then you really won't be alone.

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