Welcome to the Carnival of MS Bloggers, a monthly compendium of thoughts and experiences shared by those living with multiple sclerosis.
by Jennifer Digmann
When Cooper alluded in his last post that neither Dan nor I have been writing for our blog, I felt the need to explain what I’ve been doing.
It was three weeks ago Wednesday, July 30, that I had Gamma-Knife Radiosurgery.
This was the aggressive measure I needed to take in hopes it could control my Trigeminal Neuralgia (TN) and potentially open the doors for an equally aggressive treatment of my secondary-progressive Multiple Sclerosis.
For nearly four years I’ve battled TN, a wicked condition related to my MS. While only a small percentage of people with MS have TN, those who get this relentlessly painful irritation of the trigeminal nerve experience it in a very big way.
Almost every day and night for the past 48 months I’ve lived with the realities that I couldn’t expect to brush my teeth without pain, eat sweets without wincing, or sleep soundly without the being awakened by a violent sensation of electricity running through my right cheek and molars.
Through trials and error and countless calls to my neurologist at University of Michigan Hospital, we found medication – Tegretol and Tramadol – to somewhat control the nerve pain. It in no way was a long-term solution. We knew that, but another reality forced our hand to take a more urgent course of action: The TN medication was impacting my white blood cell count that it was preventing me from moving forward with a new MS medication, Rituximab.
After lots of research and doctor consultations, we concluded Gamma-Knife was my best bet.
Healthline.com explains that Gamma-Knife uses a targeted approach for delivery of radiation that destroys the trigeminal nerve. Also, the procedure is gaining in popularity because of its precision, effectiveness and is considered safer than other surgical treatments.
It was on July 9 that I underwent this treatment for my Trigeminal Neuralgia. To increase understanding of this advanced procedure that has the potential to help others dealing with conditions like TN, here is a behind-the-scenes look (some of the pictures are a little oogy!) into my Gamma-Knife procedure at MidMichigan Medical Center in Midland.
I was excitedly nervous as I rolled into the Gamma-Knife department.
Dr. Mark Jones and his awesome staff mounted a frame on my head to ensure it held still so they had the utmost precision when they used radiation to knock out my trigeminal nerve.
See? Mounted on my head … with screws! Yes, it was very painful, but Nurse Tammy held my hand to help me through it. Interesting to note: the metal screws did not leave any marks or scars.
Dan got to watch the entire procedure from the patient room in the medical center. Talk about reality TV!
It’s over! And hopefully so is my Trigeminal Neuralgia. Doctors warned me it could take between four to six weeks for results. Either way, I’m halfway there.
Are there any risks or side effects to Gamma-Knife? Potentially, but this photo from our fourth-row seats at the Train concert the night after the procedure says I didn’t have any :-)
Anyone who knows me knows that I’m kind of superstitious. I don’t like to talk about things before they happen for fear I may jinx an otherwise good outcome. I didn’t tell many people about the procedure before it happened for that exact reason. And even now, I don’t want to jinx a seemingly good result.
My pain is not completely gone and I still am taking Tegretol to manage it, but I am starting to feel like me again, sleeping through the night and brushing my teeth … nearly pain free.
This concludes the 158th edition of the Carnival. The next Carnival of MS Bloggers will be hosted here on September 4, 2014. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, September 2, 2014.
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