Sidney and SPML

Today we are going to hear about SPML from the perspective of a 13 year old girl. Sidney has cerebral palsy and recently underwent SPML with Dr Yngve. Sidney's family heard about this surgery from her physical therapist.

Why did you decide to try it?

Well.. being only 13, I don't think I I had much of a choice!

How old was your child when s/he started this treatment/received this surgery, etc?

13

Please share some of the changes (good and bad) you saw in your child:

Good: I can straighten my knee almost all the way! Walking on my heel much better. 

Bad: My heel hurts badly when I walk (Right now I have a cast on). Temporarily worse balance impairment.

Would you recommend it to someone in a similar situation?

YES

What do you wish you had known when you were making the decision to try it out?

The heel soreness.

Please share some of the details of your experiences, past or present. By sharing, we are a support system to each other as we each try to navigate through the special needs world!

Had all three palaces done in my right leg (ankle, knee, and groin area) Pain isn't that bad. But muscle spasms last a little bit longer. Heel pain is really the worst of it all. The four weeks I have to wear a cast are uncomfortable, but bearable. I have to wear a knee splint for at least a month while sleeping. 

For the first 2 days it was really hard to walk because of soreness, so to go long distances, I was in a wheelchair. Then for 2 weeks I had my walker that I barely use. Now 2 1/2 weeks after surgery, I walk independently, but balance is greatly impaired for a while (doctor said it was normal) I get my cast off next week.

Sidney, thank you for sharing. I hope you will let us know how it's going in a couple of months, once you've had some time to get used to living without a cast again!

Sharon and SPML

Sharon has cerebral palsy, and is somewhat of a pioneer in the SPML world, being probably the first senior to undergo the procedure! Dr Yngve of UTMB performed her SPML in June 2011, when Sharon was 67 years old. Having lived with CP her whole life, Sharon decided to try SPML to address some mobility issues. She heard about it on the internet.


Please share some of the changes (good and bad) you saw in yourself:
My right leg was bent inwards & I was wearing a foot/ankle brace because the foot rolled inward also. After the SPML, which was done on both legs, my right leg & foot are straight!!!!!!! It's much much easier to walk, my balance improved, I have more energy during the day, & I hopefully will be mobile the rest of my life. Some downsides.....the muscles in my legs are weaker so I've needed P.T., I have a routine exercise program that I do daily which takes about 45 minutes, the strength of the muscles are slower to regain than I expected. I must say that the benefits far outweight the "downs"!
Would you recommend it to someone in a similar situation?
In a heartbeat :)
What do you wish you had known when you were making the decision to try it out?
Because I was the first senior to have this procedure done by the doctor, I was a little nervous. But if I didn't have it done, I was going to be in a wheelchair & that was not acceptable to me. I do wish I had been told of the intense spasms upon waking up from the procedure. That was the worst part for me. The doctor explained that it was my body wanting to go back to the way it had been for 67 years.
Please share some of the details of your experiences, past or present. By sharing, we are a support system to each other as we each try to navigate through the special needs world!
I didn't walk until I was 3 yrs. old. Had full body braces until age 10, at which time I had an operation. After that, I did not have to wear the braces. At age 50, I started noticing little things happening, like my balance was worse. Over the years, the aging process is more pronounced with C.P. folks and my leg started turning inward more & more. I happened to see a photo of a young girl who had the SPML & that picture could have been me...my legs looked exactly like hers before the procedure. That is when I started checking it out. It took me 9 months before one of the doctors agreed to do this on me. I kept being told I was too old & it's mainly for children. For me, it's been wonderful and I have my mobility back to where I can DO things!


Thank you so much for sharing, Sharon! It is great to hear the perspective of an adult. I know for me, it helped me be more aware of what my daughter went through when she had SPML. We'd love to hear from you again in June 2012 to see how everything is going!
To read more of Sharon's experience, click here.

Avery and SPML (early days)

We have met Avery before (here), and now her Mom, Josephine, would like to tell us a little about their experiences with Selective Percutaneous Myofascial Lengthening. Avery just had this surgery 2 days ago, so it is still early days, but Josephine plans to keep us updated with Avery's progress. Here's what she has to say about their experiences so far:

How did you hear about SPML?

Our ABM therapist recommended it to us, since she really felt that Avery's muscle contractures were preventing Avery from progressing.

Why did you decide to try it?

It's minimally invasive, minimal risks, and addressed what everyone agreed is holding Avery back the most (muscle contractures) We definitely felt it was a better choice than traditional PERCS, with a much lower recurrence rate, and higher effectiveness long term.

How old was Avery when she received this surgery, etc?

5 and a half (2 days ago, Aug 26 2011)

Describe the procedure as you understand it:

She got SPML in 3 locations on each side (6 total). Gastroc recession, semitendinosus percutaneous tenotomy, Myofascial lengthening single hamstring at knee (on the right) and multiple hamstring at knee on the left, percutaneous adductor tenotomy left and right, and alcohol block obturator nerve on both sides. The SPML differs from traditional PERCS in that they don't actually cut the muscle - they sort of "mesh" the myofascia surrounding the muscle. I really recommend these two websites if you're looking for information about the procedure: Dr Nuzzo's info page here. Dr Nuzzo developed this method, and although he writes in a long-winded sort of way, all the information you could want about the procedure itself is there. Dr Yngve, who learned the method from Dr Nuzzo, answers some more questions about it more clearly here. We chose to go to Dr Yngve, simply because he accepted our insurance. He was really great. The alcohol block addresses spasticity.

Please share some of the changes (good and bad) you saw in your child:

Avery is only 2 days post op, so obviously, it is still early days, but I will tell you some of the changes we have already seen! They measured and recorded changes in her range of motion while she was still in the OR (image included), and since we got home, the two biggest changes we have seen so far have been the fact that she can now wiggle her toes (see video), and she can also sit with her legs straight out in front of her in a V shape, as you can see in the photo above. Both these were practically impossible for her before, and now it takes almost no effort :) It is still too painful for her to be up on her feet at this point, but that is no surprising I suppose. She was excited to try walking almost as soon as she was awake, but she's now feeling a little nervous about it, because every time she's tried to stand up so far, it's hurt. Hopefully tomorrow it will be less sore so that she can try her legs out a bit.

Would you recommend it to someone in a similar situation?

Yes

What do you wish you had known when you were making the decision to try it out?

I know that a lot of people aren't aware of the fact that the legs are casted afterwards. I only knew because I found several blogs from people who had already done it. Avery has half casts on her legs, and she had to wear braces to keep her legs straight for the first 24 hours. She doesn't have to wear the braces during the day anymore, but she does have to wear them at night for at least the next 4 weeks or so, so that she doesn't sleep with her legs curled up.

Please share some of the details of your experiences, past or present. By sharing, we are a support system to each other as we each try to navigate through the special needs world!

I will post again about this in a month or so to let you know how things are going.

For more pictures and information on Avery and her progress, please visit Josephine's blog here.

Joseph and Selective Dorsal Rhizotomy

Joseph is seven years old and has Hydrocephalus and Spastic Diplegic Cerebral Palsy, and he recently travelled to St Louis for a Selective Dorsal Rhizotomy. His Mom, Stella, says that they decided to go ahead with the surgery because she knew it would be life changing, and even though they are only a few days post-op, there are already noticeable changes in Joseph's physical abilities. Here is what Stella has to say:

Please share some of the changes (good and bad) you saw in your child:

We are only a few days post op, but if I had to do it all over again I would. Muscles are no longer tight, stretching is pain free and easy. Before surgery, stretching was limiting and painful. He is starting to make movements that he could not do before surgery. The road is not easy but worth it.

Would you recommend it to someone in a similar situation?

most definitely

What do you wish you had known when you were making the decision to try it out?

It was everything that I expected and more

Please share some of the details of your experiences, past or present.

We have tried botox, baclofen, going to other doctors and more doctors for another opinion and finally resulted in SDR. They believe Joseph will walk independently. But it requires work on our part and his making sure he is stretched but to see him walk for the first time it will be worth it all.

Stella, we hope that you will update us on Joseph's progress! 

Megan and SDR

Megan is a beautiful little girl with Cerebral Palsy. Her Mom, Stephanie, first heard about Selective Dorsal Rhizotomy (SDR) on TV, and just knew it would be a great thing for Megan. Megan was 9 years old when she got travelled to St Louis from the UK and got the surgery, and Stephanie says she only wishes that she'd known about it sooner! The following video shows the awesome progress Megan was able to achieve in the six months after undergoing SDR. (Please watch it, it's amazing!)

Megan is now 9 months post-op, and here is another video showing how much further she has come:

Well done Megan! You have come so far, and it is wonderful to watch.

Please visit Megan's website for more information.

NB: It should be noted that the the SDR performed by Dr Park in St Louis differs from traditional rhizotomies offered by other facilities, and if this is a surgery you are looking into, make sure you research the differences.

Adam and ABR

Adam was diagnosed with Spastic Quadriplegia and Anoxic Encephalopathy after he almost drowned when he was 12. Now 25, Adam has been doing Advanced Biomechanical Rehabilitation (ABR) since he was 16. Please read what Adam's Dad, Phil, has to say about their chosen course of treatment, and why they chose it:

How did you hear about ABR?

HBOT Parent Group

Why did you decide to try it?

Our belief that surgical or drug interventions to mitigate severe spasticity would be inappropriate and we desired a non-invasive but scientifically based therapy

How old was Adam when he started this treatment?

16 years old

Describe a typical session:

Kids are initially evaluated yearly and attend four training sessions which last about 4-5 days each. Parents must make a commitment to implement this therapy for at least 3 hours daily.

ABR believe that in cases of brain injury, ie, cp, anoxia, etc. there is a systemic collapse of the myofascial layers of the body. This collapse leads to a lack of mobility, spasticity, scoliosis and a host of structural distortions which prevent mobility.

ABR Exercises are targeted to specific areas of the body and parts use a variety of transfer media to rebuild the myofascial structures which support the bone, etc.

The parents rebuild over years the collapse of the body and with a more normalized structure you have greater mobility and then function.

The developer's site is www.blyum.com. It is heavily researched from a scientific basis and there are evaluation and training centers throughout the world. ABR does not support surgery, standers, mechanical devices to correct the structural deficits caused by spasticity and collapse. Traditional PT is also contra-indicated.

Please share some of the changes (good and bad) you saw in your child:

Great reduction in spasticity, more mobility, increased body stability and had control, correction of scoliosis, prevention of need for any surgery especially hip subluxation.

Would you recommend it to someone in a similar situation?

Absolutely

What do you wish you had known when you were making the decision to try it out?

Only wish that we knew of the programs much earlier in my son's rehabilitation and that we knew of the negative effects of traditional PT/OT approaches to structural changes in the body.

Please share some more details of your experiences.

There is a wide international support group of ABR parents and we have been involved since 2002.

Phil and his wife keep a hugely informative blog here, which I highly recommend you visit!!

Oliver and Hyperbaric Oxygen Therapy

Oliver has moderate Spastic Quad Cerebral Palsy, as well as epilepsy and a g-tube. His Mom, Chelsea, decided to try Hyperbaric Oxygen Therapy (HBOT) with Oliver after hearing about it online and from other parents. She says that one of the motivating factors to actually give it a try was that the cost was lower than a lot of the other treatments they were researching :) Oliver received HBOT at 15 months, and then again at 22 months. Here's what Chelsea has to say about it:


Describe a typical session:
40 "dives" in a hard chamber lasting approx 1 hour for the actual oxygen part where they wear a hood delivering oxygen. 2 dives a day 6 days a week with a required number of hours in between each dive. Group chamber with one adult per patient. Dives include the time it takes to get to pressure, a specified "depth" equivalent then oxygen treatment starts and then decompression or the slow release of pressure (to mimic that of divers) and then exit the chamber.
Please share some of the changes (good and bad) you saw in your child:
I was looking into SPD treatments (sensory processing disorder) with our OT as he couldn't handle having his hair, hands, body touched and was insanely sensitive to lights, noise, people, etc. There were immediate and dramatic improvements after each session (of 40 dives). After the 2nd session I had my first cuddle in my lap while I pet his head time that we'd ever had. He used to scream/cry/wail pretty much all day long- most CP kids are "fussy". It improved greatly after the 1st session and then he got grumpier leading up to the second session and then it was quite nearly gone after the 2nd (and soon after developed a means of communication to further alleviate the fussiness associated with nonverbal toddlers). The crossing of his eyes decreased (ophthalmologist decreased his eye glass prescription), his high tone/spasticity decreased. His abilities with his mouth specifically increased sucking, desire to suck and chew and eat improved. He voluntarily and functionally was able to bring one hand to his mouth to suck on a finger or part of his hand for the first time (at 22 months of age). His mood and demeanor improved to less fussy overall. Different things happened with his hips and rolling onto his side, as if there was more flexibility there possibly due to decreased spasticity. Bad... one ear got really bad with the redness and he hated his ears being checked. He was fussy in the chamber unless elmo was on.
Would you recommend it to someone in a similar situation?
Definitely
What information/advice would you give to parents making the decision to try it out?
I was glad that I knew about the options for pressure (1.5 vs 2.0) and that I had used a hyperbaric pediatrician to check him before dives and write the prescription. I was glad that we used a hard and not soft chamber and that we did the whole 40 dives and did more than 1 session. (sorry, not what you asked)
Please share some more details!
I used Dr. Rose in Charlotte, NC and the Miracle Mountain Hyperbaric center in the western Mtns. of NC. We rented someone's trailer to make the stay with my 2 kids and helpers (friends/family) to make it work. We stayed for 3 weeks and it was tough but doable and worth it. I'm glad we fit it in early as it had a profound affect on his mood and abilities that changed so fast it can't be called a coincidence. Oddly enough I didn't "buy into" hbot. I thought it was somewhat of an under-researched scam. We could afford it though- sort of- and couldn't afford to not be doing anything. I was so impressed with the results that we did it a second time and I"m so glad we did. We can't do it again because of his diagnosis with epilepsy. With his lack of oxygen at birth he was prone to getting epilepsy. This is a totally different thing than oxygen-caused injury (including seizures). It scared me at first too but only preemies on 100% oxygen right at birth tend to get these injuries. The risk to the average person is incredibly low especially when HBOT is done properly as it is at MM. They use certified technicians and have emergency protocol and we used that hyperbaric pediatrician. Anyway I would consider doing it again if we could.


For more information, please leave a comment on this post, and check out Chelsea's website.