Radiofrequency Rhizotomy Update

In case you follow this blog and not Somebody Heal Me, please check out this post for an update on the Radiofrequency Nerve Ablation procedure. In a nutshell, it didn't work.

RFA Procedure Update: 3 Weeks Later

Seeing a New Pain Specialist

Last Wednesday I had my appointment with the new pain specialist. Overall it went well and I liked the doctor. He seemed well versed on my conditions and was very kind. I got a little upset during the appointment because I think some part of me hoped he would have some spectacular, perfect option to try. Of course he doesn't, but there is at least one thing he could suggest that we can try.

I will be going back the day after Memorial Day for a procedure to see if I am a candidate for radiofrequency nerve ablation. He will inject an anesthetic into the nerves along my neck to see if I get pain relief. If I do, I will be a candidate for that procedure, which involves heating the nerves to destroy them so they cannot send pain signals. It is by no means a sure thing, but helps a lot of people.

He started me on a daily medication called Lyrica to see if that might help with my pain. He said that methadone might be an option for me, but didn't have time to discuss it at that appointment. I'm not sure if that will make sense for me or not, but it's probably worth discussing.

Meet Maisy

This is the newest member of our family, Maisy. She's a 1-1/2 year old broken coat Jack Russell terrier.

We got her Thursday night. So far Maisy and Felix are still feeling each other out. Neither is sure of the other, but hopefully they'll warm up to each other soon enough.

~ Diana

manly cat bed for Felix

I've been knitting for a little more than a year now, and I love it. It's nice to have a relaxing hobby that I can do without much light and when I don't feel well enough to read.

I finished this adorable fuzzy cat bed for Felix today. He hasn't tried it out yet, but I hope he'll enjoy it.

~ Diana

Dallas update

Last Sunday afternoon my mom and I caught a 4 p.m. flight from Kansas City to Dallas for my three-day visit to Dr. Krusz's Anodyne Headache & PainCare. Door to door, our trip down there was uneventful and very easy. More importantly, it was an awesome experience.

Day 1: Oddly enough I didn't have a migraine, so instead of starting off with IV therapy we consulted with Dr. Krusz and his nurse Jane for about an hour and half about the details of my migraines and pain and the options he thought seemed most promising for me given everything I've tried. My mom and I left the clinic to grab some lunch and went to get my blood taken for labs. Then we returned to the clinic later that afternoon so I could receive an IV of magnesium and dexamethasone, a steroid.

Day 2: They started me right away on another IV of magnesium and dexamethasone again, but also pushed tramadol to treat the migraine I woke up with that morning. It was only about a 5 on a scale of 1-10, but after about 600 mg of tramadol, my migraine was gone.

My mom and I had most of the afternoon to ourselves, so we had a nice long lunch and spent some time at a mall.

My migraine started coming back that evening, so after a nice dinner out with my friend Lyndsey and her family, I went back to the hotel, took all my medication and hopped into bed.

Day 3: I woke up with another migraine, which I estimated to be at a 3. It built up to a 5 by the time they were ready to treat me at the clinic, so Dr. Krusz decided to give me an IV of ketamine that day to see how I tolerated it. It was a bit intense at first, but after they slowed it down some it worked really well for me. My mom and I went out to lunch, then came back to the clinic where I received another IV of ketamine. It was even easier to tolerate the second time. I felt really, really good when we left that afternoon.

Moving forward, we'll be addressing the issues and conditions uncovered through the testing, such as my thyroid levels and diabetes, and getting me adjusted to my medication changes. They think I would be a good candidate for Botox, so that is something to consider again. I am also planning to start a preventative medication called Namenda in the next couple of weeks. With Dr. Krusz's help I'm also going to be making arrangements to get magnesium IVs from a doctor in my area.

Not only are Dr. Krusz and his staff impressively knowledgeable about headaches, migraines and related disorders, they are also some of the kindest, most compassionate medical professionals I have ever encountered. By noon on that first day I felt like a huge weight had been lifted off my shoulders. I knew I'd finally come to the right place. None of us expected this to be a quick fix trip, but it has answered a lot of questions for me and put a spotlight on specific areas of my health that have thus far not been addressed.

Dallas trip

Happy New Year to each and every one of you!

On Sunday my mom and I are leaving to go to Dallas through Thursday, where I will be going to a headache and pain clinic for treatment and evaluation.

The prospect of another 20 minute neurologist appointment where I'd get very little information and limited options was so awful that I decided to explore the possibilties outside the Kansas City area.

I have read a lot of positive things about Dr. Krusz and Anodyne Headache & PainCare and have seen his knowledge about migraines and concern for migraine patients firsthand by reading his responses to patient questions on websites I visit.

I talked to my parents about this and called the clinic to get some information. My mom and dad were on board completely and my mom even volunteered to come with me. I'm so glad I won't have to do this by myself, and I'm more thankful than ever for their support and willingness to do whatever it takes to help me get my health back. Hopefully someday I can repay them for all they've done for me.

I'm nervous about going. I hate telling my whole story to new health care providers because there is so much to tell and usually so little chance of anything helpful coming out of it. I'm trying to have a positive attitude and doing my best to write down everything I can think of ahead of time to alleviate some of the pressure I'm feeling to remember everything.

Wish me luck and keep me in your prayers!

~ Diana

K-State game @ the Sprint Center

A couple weeks ago we went to the K-State basketball game in Kansas City with Cliff's friend Rob. Before the game we went to the College Basketball Experience and Hall of Fame. It was so cool. We had a blast there. If you're in the area, it would be a really fun place to take school age kids. Adults will have fun, too, whether they get in on the action or just watch.

We took some photos and I thought you might enjoy seeing them.







~ Diana