Sunday, May 6, 2012

18 Months and Counting!

"Is there an 18-month treat?"
Yesterday, May 5th, marked Rilley's 18th month since Dr. Pluhar flawlessly performed his brain surgery and set him off on the journey of a lifetime.  Thanks to her and Dr. Ohlfest's innovative research Rilley has been able to celebrate this significant milestone and there is absolutely no sign that he has any intention of slowing down.

It still seems strange to not be planning any more trips to Minneapolis.  However, we do keep the good folks there updated on Rilley's progress and we will be sure to share this miraculous milestone with them!
Posted by at

4 comments:

  1. LindseyMay 10, 2012 at 9:09 PM

    This comment has been removed by a blog administrator.

    ReplyDelete
    Replies
    1. RoyMay 10, 2012 at 10:27 PM

      Lindsey, I didn't mean to delete your comment! I was in the admin pages of the blog and accidentally did it. Sorry! I've copied it out of my email and reposted it below.

      --------------------------------------------

      Hi Sara and Roy,

      My own dog, Riley, also underwent Dr. Pluhar's fantastic operation and is doing great and tumor free for almost 2 1/2 years!
      I have a question for you, is your Rilley still on anti-seizure medications? Has he any an seizures since the surgery? My Riley has done great and has been seizure free, but we are afraid to take her off of her meds.

      Anyway, congrats on finding the trial and saving your dog, it has been such a blessing! I'd love to converse more if you're interested.

      Thanks!
      Lindsey

      Delete
    2. SaraJuly 8, 2012 at 9:38 PM

      I am sorry it has taken me so long to respond to your post. I am thrilled to hear how well your Riley is doing since surgery ... 2.5 years is absolutely amazing. When our Rilley was diagnosed with his meningioma we were given survival rates of a couple of months and here we are at almost 2 years since his first seizure.

      Rilley has not had any grand mal seizures since his surgery. We have noticed a few episodes of teeth chattering, stare seizures and some symptoms which may indicate petit mal seizures. I will warn you though that I notice every minor twitch, heavy pant or when he is holding his head slightly askew. I think I drove poor Liz around the bend for the first while.

      Having said that, we have noticed that Rilley is quite sensitive to his anti seizure medication. If we are more than an hour or so late giving him his medication we notice that he will seem a little "off". As a result, we are very careful that he gets his meds at 7.5-8.5 hour intervals. He is currently on Levetiracetam (Keppra) 520mg. 3 times/day. Rilley's liver enzymes were dangerously elevated after having been on Phenobarbital for just a couple of months that we needed to find a med that was not metabolized by the liver. Luckily, he tolerated the Keppra well and he has not had any problems

      The only problem is the cost. A 4 week supply was costing us approximately $150.00 CDN. After completing the trial in Minnesota, Rilley is followed by his regular vet and also a veterinarian neurologist. The neurologist suggested a compounding pharmacy in Arizona .... we can order it for about half that price through them.

      What medications do you have Riley on? Have you ever tried taking Riley over his anti-seizures? Do you have any follow up done?

      So many questions .... I am so thrilled to have Rilley with us still. Liz, John and the whole team and the University of Minnesota are absolutely phenomenal.

      All the best to you.

      Sara

      Delete
  2. RoyMay 10, 2012 at 9:35 PM

    Lindsey, thank you for contacting us. It is awesome to hear that your dog is 2 1/2 years out from surgery/treatment and doing well!

    What an interesting coincidence...Riley and Rilley and both participants in the same trial. Rilley has been doing great and he has been seizure free. There have been times (only twice in the last 18 months) when we've noticed what we think have been small breakthrough seizures. Mostly tremors of his jaw, but they didn't seem overly serious and last less than 10 seconds. Rilley's local neurologist isn't worried about it. As for the anti-seizure meds, we haven't discontinued them as it was suggested by Dr. Pluhar to keep him on it. She explained that, even though the tumor is gone, his brain is hardwired for seizures.

    Absolutely, we would love to converse more! It's rare that we hear from other participants in the program. Sara will touch base with you, she's the bright one when it comes to medical issues. After all, she's the one that found the program and made the first contact with Dr. Ohlfest.

    Thanks again for posting your comment on our blog! Seeing continued interest encourages me to keep it going.

    Sincerely,
    Roy.

    ReplyDelete

Subscribe to: Post Comments (Atom)