This post is for other parents that are also interested in this surgery. There are Facebook groups that have been irreplaceable in answering questions, getting feedback from other parents, and understanding how others have arrived at this decision also.
I'll give you a rundown on:
*What our choices were
*How we made the decision for SPML and SLOB
*The pre-op and surgery process
*Contact names and numbers, and other helpful people along the way
*A rundown of cost and how we did our fundraising
*Our 3 week post op and how she's feeling now!
*4 week post op with casts coming off!
Feel free to skip to the part in the above list that pertains to you, or skim through the whole thing. Welcome to Bryer's Fan Club!
This whole blog is about her, so feel free to start at the beginning with THIS LINK. In a nutshell, Bryer is experiencing spastic quadrapaligia cerebral palsy, which means it affects all 4 of her limbs (quad) and makes them tight (spastic). Even the suggestion to move her right arm will produce more tightness. She is able to roll from back to tummy, tummy to back, army crawl/scoot 3-6 feet, sit unassisted on soft surfaces, as she is still gaining strength and balance in her hips and torso.
She is cognitively very aware. She has nicknames for all 6 of her family members, likes to play pretend, sings songs well enough that we know what she's singing, but has speech delays. She speaks about 9 dozen words, although she's not always understood by others outside our family. She lights up with music, loves other kids, and is learning to use a communication device similar to an ipad (Dynavox).
What our Choices Were
Because of Bryer's diagnoses of cerebral palsy, her brain tells her muscles to stay tight. We knew it was coming, but a big part of me wasn't ready to take the next step. We have tried lots of options to help relax the muscles. All were a help in one way or another, but none was a cure-all. In addition to regular physical therapy, occupational therapy, and speech therapy, we have also had success with:
Essential oils (less sickness, no seizures, and increase in vocals)
Foot zoning (relaxed the muscles in her hips, opened things up for her brain and spinal cord)
Cranial-sacral therapy (a way to release where her body has held tension, which has increased vocals, sleep quality, regulated digestion, clearing her sinuses during a cold, and helped her body feel relaxed usually for the next several hours)
Myofascial release (a way to keep her muscles, tendons, and connective tissue healthy and mobile) Hyperbaric oxygen therapy (huge digestion regulation, permanently stopped all prescription medications, eye tracking became better, increase in vocals)
Fish oil, magnesium, and other supplements (because we need to feed the body and brain to give it the best fuel to work with).
We had 2 issues in front of us -
1- Muscle tightness
2 - Because of the tightness, it was pulling her hip out of socket
I feel like we've been led to the next clue in this puzzle every step of the way and am thankful for answered prayers. What has been right for us, may not be for the next child. Each human body is so individual and unique.
Still, nothing touched those tight muscles longer than the next nap or night's sleep. We have gone through phases of stretch-all-the-time, to don't-stretch-and-see-what-happens. I finally made the appointment with the doctors in our area for surgery options.
To address the muscle tightness, there seemed to be only 2 choices - botox injections or baclofen (oral or a surgical pump). Neither seemed quite right - pumping my little girl with toxins (botox) that her body would eventually build a resistance to; or inserting a (baclofen) pump the size of a hockey puck in her abdomen to administer drugs 24/7 to keep her body loose. Even though it didn't feel right, I decided to give it a good chance and meet with the doctor who would do a pump. 4 hour appointment... Solid conversation with the doctor... He is known to be the best of the best in the whole country for baclofen pumps, yet I walked out of there knowing there HAD to be something else.
Second, we still had the issue of her hip dislocating if left untreated. Our local doctor recommended a procedure where he would cut a wedge from the femur and tilt the femoral head (ball) into the socket. I had questions about leg length, leading to scholiosis, and the actual cutting of bone. If we moved forward with this procedure, we also needed something to manage the spasticity or we'd be sending her back for another identical surgery in 3-6 years.
About this same time I was learning about 2 procedures called SPML and SLOB. I'll explain those in depth, as that's what we eventually decided to go with.
|This is a picture taken from Dr. Nuzzo's website that shows in the upper right corner how a wedge would be cut out to tilt the femur head into the socket|
How We Made the Decision
I joined a few Facebook groups to ask questions of other parents and adults. To be fair, I joined groups for both the baclofen pump and SPML and SLOB procedures. I was also looking for something outside our area. What are they doing in other parts of the U.S? The world? The SPML group intrigued me and nothing I found on there was contrary to what I already felt about the human body. Also, despite searching for negative experiences, I found NONE. There were reports that 10% of patients had a return visit for the same procedure (SPML, not SLOB) 5+ years later, but with it being so non-evasive, I felt that the 10% chance was worth it.
For some, the baclofen pump may be the right answer. For us, it clearly was not. I was not even willing to do the trial, so I can't tell you what outcome that would have had.
The Pre-Op and Surgery Process
With spastic quad cerebral palsy, the brain sends messages to the muscles to stay tight, stay tight, stay tight. The part of the nerve that helps with the brain transmission is the covering called the myelin sheath (this will be important later) and is a fatty covering (which is one reason why healthy fats like fish oil, coconut oil, and avocados are so good for the brain).
SPML is a type of tendon lengthening and stands for Selective Percutaneous Myofascial Lengthening. It's different than a typical lengthening because the tendons are not actually cut, so there is little to no scar tissue around the site, providing a super quick recovery . She had this procedure done in her achelles tendon (heel cords) and adductors (inside, upper legs). It can also be done in the hamstrings, but hers had good range.
Here's a cool video explaining what the facia is (as in the MYOFASCIAL piece of that big long surgery word), which is what is 'pin pricked' to provide lengthening. The human body is absolutely amazing to me!
She also had alcohol blocks in her adductors and biceps (upper arm). The alcohol blocks are an injection that 'melts' away that fatty substance covering the nerve (remember I said it would be important). It interrupts the signal to 'stay tight, stay tight, stay tight' and gives the body a chance to do something else.
|Because Bryer's hip was 'too far gone,' for only the tendon lengthening and alchol blocks, she also had to have a hip surgery refered to as an osteotomy, or SLOB procedure. As the doctor explained, it's like a softball in a glove, where the ball (head of the femur) is coming out of the glove (hip socket). Being a college softball player, I knew immediately that this was my kind of guy, speaking my language! He explained that he would lengthen the fingers of the glove to secure the ball into the glove. (This is different than the other procedure where they wanted to cut a wedge from the femur bone and tilt it into the socket. Adding to, rather than taking away from, her body made sense to me.) For some patients, it's enough to put them in a hip positioning brace. Bryer's hips were considered 70% out, and they call them 'too far gone' and need to do this surgery to form the socket around the femoral head. |
Once we knew that the SPML and SLOB was the route to go, I started researching doctors. There are only 2 in the United States that do these unique procedures. Their contact info is below. Dr. Nuzzo trained Dr. Yngve, who is who we ultimately ended up going with.
I called Dr. Yngve's office and they sent a packet within the week for us to fill out and return with recent hip x-rays taken by our local doctor. Within about 2 weeks of them receiving our packet, Dr. Yngve looked it over and personally called us. I had my list of questions ready and had an hour long discussion with him about the procedure, what to expect, specifics about Bryer, etc. He is very easy to talk to and left more than enough time for me to get a full understanding. He also said this would not be the only time we talked before surgery and that he would be open to more phone calls as needed.
Contact names and numbers,
and other helpful people along the way
Dr. David Yngve (409) 747-5700
(Belia is the one who answers and is very friendly and helpful)
We chose surgery with him at UTMB - 301 University Blvd Galveston, TX 77555-0165
The doctor who trained Dr. Yngve is Dr. Nuzzo in New Jersey.
Dr. Roy Nuzzo (908) 522-5801
99 Beauvoir Ave, Summit, NJ 07901
His comprehensive website (though not super reader friendly) is
Other helpful contacts if you are using Dr. Yngve:
The hospital social worker can arrange for housing with the Ronald McDonald House
Linda Perez (409) 772-1541 was very helpful. Call 3-4 weeks prior to surgery for her to fill out the referral paperwork
Ronald McDonald House in Galvaston (409) 762-8770 They can't guarantee a room and will probably ask you to call a few days prior to surgery to make sure they have room
A rundown of cost and how we did our fundraising
Maybe it sounds silly that we got this far into the process before we knew how much this would cost, but it had all fallen into place so well and was clearly the answer to our prayers. The hospital sent us an original self-pay quote of $112,000. (Don't stop reading at this figure... I'll explain!) This did include an 8-night hospital stay, should it be needed. It also included the SLOB procedure, which is the most evasive part for Bryer. Those that have only the SPML done are considered out patient and would be significantly less without a hospital stay.
Needless to say, $112,000 was a hard number to choke down. Her current disability insurance wouldn't cover the surgery. More prayers. More research. More asking on the Facebook pages (no one wants to talk money or insurance). We found that Blue Cross/Blue Shield was accepted by the hospital and very easy to work with, so we started an additional insurance plan with them. Minus the premium, our out of pocket and travel expenses were expected around the $10,000 range.
More prayers. More research. I decided to run a t-shirt campaign. We encouraged Bryer's supporters to decide on a personal goal for themselves to "Wake Up and Be Different," just as she would after surgery. They bought t-shirts to commit to their goal, and show their support for Bryer. We raised $9000 for her surgery in a matter of a few weeks!
Here's the video for how the fundraiser went...
Bryer's 2 week post op report can be found HERE.
Bryer's 4 week post op report can be found HERE.
Here are her 3 month post op x-rays. You can see the 'shelf' built on her right hip socket (our left by looking at the x-ray). We have done all the follow up with our local doctor, who has been impressed with the work done and the outcome.
What's on an x-ray is one thing. What really matters (to me anyway) is how it has affected her functioning in everyday life.
She spent a whole, hot, sticky, 3 month summer in a hip brace and 4 weeks of that in ankle casts. Besides getting to take it off while we made adjustments, she was only out of it 4 other times - and 1/2 hour at a time at that. If I felt that surgery was the answer, then she deserved the best way to recover with the best outcome.
We tried to find other ways for her to play with water without getting wet. (The water pillow with floating toys her siblings helped make for her)
This is the summer we really learned to serve. We're lucky we have such a cute project to practice with!
The brace is not cute. It's not a fun accessory. I'm not gonna lie. Some of the summer, it was just a plain pain in the rear. It was hard to get her in a car seat, a stroller, and she had to have a different wheelchair to accommodate her wider legs.
There were tears - more on my part then hers. And then I'd see her happy face and realize that if she could endure it with a smile, then I could too. She began to stand with lots of help about 6 week post op.
Then there were more tears when she had to lay down - she wanted to be up, up, UP!
At about 10 weeks post op, at the end of July, she started taking steps! The doctor warned us not to worry about walking, that it would be hard to do in her hip brace. He forgot to tell Bryer!
3 Month Post Op
After 3 long months, her brace came off and her once tight, rigid legs were floppy like a baby giraffe. I worried that she would loose her balance and core strength, but with the decreased spacticity it actually helped her gain more of an understanding of where her body is at.
The only area we didn't see longer improvement with was her right arm function. We were good in the beginning about tying up her good arm to make her use her right, but within a month or so, it was back to being tight again. With the rest of the improvements, I'll take it how we can get it!
Love the update. I especially love the progress and wonderful strides your family has made already. Way to go BryerReplyDelete
This comment has been removed by the author.ReplyDelete