So it’s been about 5 weeks since the procedure. So far, no change, but I’m told it will take anywhere from 6 weeks to 6 months in order for us to know whether or not this worked. In the meantime, I’ve had some increased pain from the lack of protocol following the Cisternogram. To combat this I was told to increase my Topamax dose to 75 mg 2x/day. While this has controlled my pain, I have had some side effects of tingling in my hands, feet, ears, and upper lip area. However, this is tolerable!
I will see my neurosurgeon again on 4/23 and my radio-oncologist on 6/10 to follow up. I hope to have better news for each of them when I see them this time. I’ll keep you all posted.
Best wishes for a pain free day/night.
Sorry, Sarah…I’m just seeing this question for the first time today. The Cisternogram is used to help locate the nerve for the procedure. They push the dye into the head (after it is added via a spinal tap) and immediately take you for a CT scan. The dye shows the doctors exactly where the nerve is so that they can pinpoint the exact location on the nerve to radiate during the CyberKnife procedure. It is also a way for the doctors to figure out if they CAN do the radiation. For example: I have a plate in my head from the MVD I had in 2007. If the scan was affected by the plate and blurred the images, they would not have been able to do the CyberKnife.
I hope this was helpful. I hope you are well. Feel free to ask anything else.
4.10.2009: 7 weeks since the CyberKnife treatment. Still have pain, but I have been able to cut down my Topamax to 50mg-100mg/day instead of 75mg 2x/day. Occasional "stabbing"pains are still there, but tolerable mostly. At this point we’re in the range of time that this procedure could start working. We’re all keeping our fingers crossed.
I’ll post another update if anything changes. Happy Holidays to all!
6.28.2009: 18+ weeks (just over 4 months) since the procedure. Unfortunately, no good news. I’ve been to see both my neurosurgeon and radio-oncologist in the last few weeks and all they can say is “wait…just a little longer.” Basically, if there is no change at the 6 month mark (rapidly approaching), then the procedure did not work.
In addition to this no-so-good news, about a month ago I was lying on the couch watching TV with my husband one Sunday night. Out of NOWHERE came this horrific pain in my head…the kind of pain that I haven’t experienced since before my MVD surgery. It lasted well into the next day as well, which is strange even for me! Since that time, my pain episodes have increased in frequency and intensity…almost like we’re going backwards. My neurosurgeon has started to talk to me about other procedures, but that we should wait until we are 6 months out from the CyberKnife radiation. It’s the type of procedure that, if it works, will one day just “shut off” the pain, as if shutting off a light switch (or so I’m told). Unfortunately, it does not work for everyone…just mostly everyone, and so far I’m not mostly everyone.
So, we still have a little less than 2 months to go until that magical 6 month window is exceeded. We are all still hopeful, but preparing for the next steps should it not work. I have been back to my pain management specialist and neurologist to try some new meds now that I’m not pregnant or nursing…it gives him a whole new arsenal of options. Whatever the outcome, I am still grateful for all of the help I’ve received, all of the support, and really…my health. This will not kill me (it’ll just make me want to die sometimes). I have a sister who is a breast cancer survivor (diagnosed at 30) and know others who are either being treated now, have been treated, or have succumbed to other terminal illnesses. Some days, this is what keeps me going.
Best to all…keep thinking happy thoughts.
9.20.2009: 7 months post CyberKnife and no relief. Oh well. It was worth a shot. My doctor thinks there is a possibility that my TN issue has grown back, as I did not have the standard fare TN. I had a case where I had veins that had grown around the nerve. In 10-15% of patients like me, it grows back. I have had some very severe “episodes” as I call them in the last 2 months, but it’s still not as bad as it was prior to my MVD. I don’t know where we go from here. I am trying some new meds which may be the reason that things are mostly tolerable, but it’s hard to be a mom of a toddler and deal with my pain when I don’t have time for an episode when I’m the only one with him.
I’m sorry I’m not writing with better news, but there has been a lot of success with this procedure and I don’t want to discourage anyone from trying it. I have had no side effects, so for me, it was totally worth the try.
Best to all.