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.
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.
I hope you have a full recovery. Good luck.
Wow, what a story. Glad to hear of your fast recovery!
The pictures of screws to your head…yikes! Were they phillips or straight-slot?
Best regards to speedy health!
Thanks, Judy! And thank you, Doug! The screws in my head weren’t loose, for once 😉
Goodness! Glad this all went well! I have a family member who had the gamma knife surgery several years ago, and hers also was successful. Happy for you!
Thanks, Barbara!
Have been thinking about you lots lately. I’m so glad to hear the preliminary positive news. And also just wanted to say, gosh, you are brave and strong. Someone get this woman a cape.
Thanks, Cynthia. Yes, preliminary positiveness. Yay! As for that cape, don’t think so. However, maybe I could shop for one in Austin 😉
Dearest Jennifer,
You are so very brave. I will definitely keep you in my prayers for a full recovery.
Thank you, Mimi. Prayers are appreciated! Hugs!!
Prayers for continued improvement. You both are so very special.
Your words mean so much, Marcella. Thank you!
Hi Jennifer, I have had 3 radio frequency ablation procedures done over the past 6 years. Then the nerve grows back. Also the side effects if they burn too much of the nerve are horrific….total numbness on side of face, can’t feel tongue, possible blindness in the eye on the side they burn the nerve.
Do you get any of these with the gamma knife procedure?
Hi Patty,
Yes I was warned that there are risks, some of which you mentioned, with the Gamma-Knife procedure. I considered my options and this was the best choice for me.
It has been a little over 4 weeks since my procedure and I’m still feeling some discomfort 🙁 but nothing close to my level of pre-Gamma pain.
Again, it has helped me and may be an option for others dealing with painful Trigeminal-Neuralgia.
Take care,
Jennifer
your willingness to share your life with others so candidly and so beautifully is what makes you and Dan so loved. Lovable to say the least. I do hope that the surgery is a great success. So many of us live with a variety of pain. Another symptom of this disease. One other symptom may be the extraordinary perspectives that people like you and Dan are able to offer the rest of the world. I am extremely grateful for all that I have learned from you both.
Thanks for the wonderful comment, Michael. Dan and I appreciate and value your wise perspective!
In fact, we all have great points to add to the conversation and that’s why being involved in the MS blogging community is great. So much to learn and share, and friendships to treasure!!
Hi Jennifer and Dan, I’m new to your blog and I’m just so thankful that you blog about MS and its not all clinical and difficult to read. It’s personal and down to earth. I’m thankful to Yvonne Desousa for sharing your blog so I had a chance to find you guys. You two seem pretty cool, and looking forward to what you have to share. So thanks again, Penny
Thanks for joining us, Penny 🙂 Glad you found us, and glad we found Yvonne. She has such great things to share. We look forward to staying connected with you, and please check in with us again. BTW: We’d love to connect with you on Facebook too!
We’re at https://www.facebook.com/pages/Dan-and-Jennifer-Digmann Makes the MS world such a smaller place.
I fully agree that you want to keep your life as normal as possible. I had a vacation last summer that opened my eyes on how easy it was to find the help I wanted. I was going to be near Machu Piccu, which is at the top of my bucket list, and I found that I could go in my wheelchair. We hired assistants to push my chair around on the mountain and we went. It took 4 people to lift me and my chair over some of the rocks along the path, and those 4 to help me climb the steep steps. Then we got to the overlook. It was as wonderful as I have always dreamed it would be. Go for whatever you want, but be careful of your limitations.