It’s been some time since I’ve talked about the Brain MRI I had back in May and there was a reason. The biggest reason was that I didn’t want to jump to any conclusions or speculate ‘out loud’ while the two biggest events in my son’s life were happening – his graduation from High School and his 18th Birthday. Both of which have happened. (Happy Birthday Pup!).
I had a Brain MRI because I was having an increase in the number of migraines per week/month than I am used to having since being on a maintenance medication (Topamax) that is supposed to stave off the migraines. I have also been having some issues with the sight in my right eye as well as the hearing in my right ear and some cognitive issues such as some trouble finding words I want to say or just not remembering words at all. Both of my Oncologists agreed that a Brain MRI was the most logical next step with these particular ‘complaints’.
The results of the Brain MRI were a bit surprising. It showed that I have a small 6mm little brain baby in my frontal lobe. Not exactly what I wanted to hear. And here’s why. The good news is that this little guys is does not appear to be Metastatic in nature. My little guy is what’s called a meningioma tumor. Meningioma tumors are mostly benign and if they aren’t causing any issues they can stay put all comfy and cozy forever. In comparison to previous scans, it does appear that my little guy is growing and if he continues to grow, I will eventually need radiation to zap him back into submission.
OK, so there’s that. But it still doesn’t answer the question of why am I having increased migraines and the other issues. So, I was referred to a new Neurologist to see if she could get to the bottom of what was going on.
I spent 2 hours with my new Neurologist, Dr V. She was THROUGH. So much so she was asking my questions about my medical history so far back that I couldn’t remember! Things took an interesting turn when we got to the physical exam portion of the visit. (Relax, that’s not what I mean). Dr V did all the typical neuro tests – touch my finger to my nose, then to her finger. Follow her finger with just my eyes. You get the idea. Then she had my bend over a bit so she could examine my neck and press on various spots asking if this or that hurt. All was fine UNTIL she got to the right side of my neck and head and that’s when the mother off all pain kicked in and I was answering her with a loud YES, STOP! Dr. V seemed quite surprised to find the spots she was pressing on were painful to me and frankly, so was I considering that they didn’t hurt me 20 seconds before she started the whole pressing/poking process. She pressed up on my head as if following a path and each press hurt a little more than the last. EVEN MY HEAD!! What the hell was she doing?? I told her before she started this that I decided I liked her but now I was going to have to re-think my decision. She giggled at my statement, taking it as a joke but I was definitely NOT joking. This woman was hurting me and I wanted it to stop.
Finally, Dr. V told me I could sit back up. She told me she was pretty sure she figured out what was the cause of my complaints and probably the root cause of why I had been suffering from migraines for such a long time. Dr. V said I had something called: Occipital Neuralgia. Holy Hell. I have another damn medical condition??? So, Occipital Neuralgia is when the nerves that run from the top of the spinal cord up through the scalp, (those nerves are called the occipital nerves), are inflamed.
Dr. V tells me there is a procedure that can be done to ‘turn off’ that particular nerve and it will probably solve my issues and get rid of the pain I’ve been in. Um, OK, tell me more…. She tell’s me that the Neurosurgeon can do a procedure called a Nerve Block where he will inject pain medication into various spots along the nerve and in effect ‘block’ the nerve and kill it. Said in an easier way, it’s an epidural for my head but will last longer. I was all for it UNTIL she tells me WHERE the injections go. NEEDLES IN MY NECK AND MY HEAD. (There really needs to be a better way) Oh, yeah, and the best part, Dr. V tells me that yes indeed, there WILL be pain. LOTS OF PAIN. Oh goodie! Where do I sign up???

Regrettably, I am having an Occipital Neuralgia Nerve Block on Monday morning. I did tell Dr. V that I would be taking some Xanax prior to the procedure and she was agreeable. Which is kind of funny because she really didn’t have a vote in the matter. I am ONLY doing this because I am having 3-4 migraines a week, the vision in my right eye is not good and when my head hurts it’s almost impossible to see. When I don’t have a full blown migraine, the right side of my face feels heavy and the hearing in my right ear is strange, like there is water in my ear after I’ve been swimming.
This has all been going on for the last 4.5 months and has gotten progressively worse. It makes being on the computer or my phone very frustrating because I can’t see things very well. Even if I wear those magnifying reading glasses that are supposed to make things appear clearer, well, not so much for me.
So, if you happen to think about it, on Monday, please throw some good juju my way. That this procedure is really not going to be as horrific as I envision it to be and that it gives me some relief.
(Next milestone is in 30 days – Moving Adam into his dorm room!)
Why do so many of these medical procedures have to be painful? Ugh. I am sorry about that part of it. I am also very much hoping this procedure brings you relief. And very good news about the non-mets brain baby. Thinking about you today and beyond, Susan. Thank you for the updates.
Oh, you poor baby! I’m hoping it goes quickly, and the relief from migraines is even quicker.
I’ve just read your blog and wanted you to know that I will be thinking about you tomorrow and willing the procedure to go well. You are a very brave lady indeed. Here’s hoping that the procedure gives you immediate relief.
Best wishes,
Laura 😊
Lots of good energy coming to you on Monday. I’m sorry you’re going through this, but I’m also glad it’s not a met to the brain. Hang in there! XOXOXOXO
We will certainly be thinking about it, and not just on Monday. Thank you for keeping us in the loop. Do you want us to go with you? Please let us know if/when we can be of help. Lots of love, Mom & Dad