Thursday, June 2, 2011

Selective Dorzal Rhizotomy: Choosing Mayo Clinic

When we chose to have Nina's Rhizotomy done at Mayo Clinic, we had a few people ask us why we were not going to St. Louis Children's Hospital. If you do a google search on Selective Dorsal Rhizotomies, it is very likely that Dr. Park will come up in your search. As a matter of fact, when I began to connect with other families that had their children have this surgery, all of them but one had gone to St. Louis to have Dr. Parks do the surgery. He is that good!

So what is it about Dr. Park that make people go to St. Louis? For instance, he probably does the largest number of SDR's. With a large number of kids having the same surgery, you get to see a bigger number of positive post rhizotomy outcomes. Because they do so many rhizotomies, they know how to work with insurance! Word of mouth from other parents is powerful! The type of rhizotomy that Dr. Park developed is unique as it is the least intrusive type of rhizotomy there is, which makes recovery easier.

So why did we chose Mayo?

Mayo Clinic has a team approach.  Nina's Pediatric Rehabilitation Doctor, her Physical Therapist, Occupational Therapist, Orthopedic Surgeon, Neurologist, and Neurosurgeon were all involved. We talked to all of them in regards to the SDR, they all collaborated and studied her gait analysis together and each one of them took time to look at the results and at Nina from their own area of expertise. I love that! There is no one man show but rather a group of people coming together and saying, "What can we do here to help" and the reasurrance and confidence in the team approach is something that we really valued.

Dr. Wetjen, does the exact same SDR as Dr. Park. Smaller incision, and shorter recovery.

There are some advantages to being "The Mayo Clinic." I am amazed at how quickly things were set up for Nina. From the gait analysis to getting a wheelchair.

Again, it is Mayo Clinic and they know how to deal with insurance companies. There is also a reason why there are so many people that are able to come from all over the world.

The results are just as good as with Dr. Park. If you look at the number of surgeries that Dr. Park has performed and look at the positive outcome, you will find that Mayo has the same comparable results.

What we liked better at Mayo Clinic.

For us it was the convenience of being closer to home.

We love the team approach. When you walk into Mayo clinic you end up working with a team.

Recovery. (I believe this is pretty significant). I spoke to about 8 parents and they all described the following 2 days after the rhizotomy to be very traumatic. There were a few parents describing their children as having severe muscle spasm, the kids writhing in pain, and screams and tears. I WAS SCARED! I talked to Nina's team about this and they said this is where Mayo does things different. Pain management pre and post rhizotomy is top notch! Nina was on a medication that although made her highly emotional, it really helped with the pain! After the surgery she had a "pain management team" an epidural and several meds in hand to make her comfortable. While it was hard post-surgery, Nina complained mostly about the catheter and about the IV's. We dealt with very little pain and the one time that we needed extra meds, it was taken care of right away. This surgery was a lot easier than her tonsils hands down!

Rehabilitation. The rehabilitation unit at Mayo clinic was the most caring staff I have ever met! We loved the rehab unit! The nurses and Patient Care Assistants went above and beyond what we expected! Nina had a nurse and a PCA at all times. They cared for Nina and for us so well! From doing our laundry to bringing us coffee, these people were incredible. I cannot say anything but good things about the time at the rehab center! Two weeks of intense therapy made easy by these incredibly dedicated staff. The therapists and doctors were superb! Team approach all the way through with a lot of caring and a lot of supporting.

Why chose Mayo Clinic? I would not do it any other way!

As a disclosure, Mayo did not ask me to write this post. I wanted to share our experience with Nina's Rhizotomy, and I would highly recommend Mayo clinic based on our experience!

Here are a couple of links from the Mayo site:
-Neurosurgery
-Pediatric Rehabilitation Program
-Cerebral Palsy

3 comments:

  1. We didn't go to Dr. Park, either, for the same reasons you chose Mayo. I just couldn't see going to St. Louis to "strangers" then coming home to manage our own therapy - I liked the "package deal" :) much better. We went to Children's Hospital of Alabama, and while the neurosurgeon there does a lot fewer SDRs than Dr. Park, he had been doing them for about 20 years (and that was 5 years ago). He also does the less-invasive/smaller incision procedure, but he started it a month or two after Sarah Kate's surgery. :( I absolutely think we made the right choice.

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  2. How exciting, I have been following your journey and been praying for you all since before you brought Nina home. I can't wait until you have time to give an up date on the girls... post surgery, and post move!

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  3. Thank you for writing this . My daughter is 12 and right now is in surgery with wetjen at mayo. So glad u also had great experience here . It makes me feel so much better for the after. Thank you sincerely from another mom with a cp daughter having SDR .

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