Coverage for life-changing SDR surgery proves elusive for Ontario families

In less than a month, four-year-old Mason Anderson gets a chance to walk independently.

The Orillia, Ont. native has spastic cerebral palsy – a neurological disability caused by brain damage at birth that creates motor weakness and can negatively impact balance, muscle tone, dexterity and movement. It sometimes affects speech and often causes crippling increases in muscle spasticity.

Mason was born a triplet at 29 weeks gestation and after five days on Earth, he suffered a severe brain hemorrhage. This caused cerebral palsy and Mason also developed hydrocephalus, which required shunting. These days, Mason participates in an intense holistic physiotherapy program called Conductive Education. His strict regimen of exercises three hours every weekday before school and five hours on Saturday allows him to walk with a walker.

On Nov. 12, 2015, Mason will undergo a potentially life-changing surgery known as a Selective Dorsal Rhizotomy [SDR]. The procedure sees an incision made on the lower back and a section of vertebrae removed to expose the spinal cord and spinal nerves. Sensory nerves are then separated from motor nerves before being stimulated to find those sensory nerves causing spasticity. Once located, the problematic sensory nerves are cut, which will reduce or eliminate spasticity, loosen the muscles and make movement easier.

SDR can change lives

I know first-hand what Mason can look forward to.

Not only does his surgery date fall on my birthday, but I also have cerebral palsy and I had the SDR surgery as a four-year-old in 1990. I believe it was largely due to this surgery that I was able to go from using a wheelchair to walking with a cane and walking short distances independently. However, these results are even more than Mason's parents are hoping for.

“I hope Mason will be out of pain and he will be able to do more of what he wants to do. I hope he can have more control over his body, whether it is walk independently, with canes, or just play with his friends easier. We want Mason to be as independent as possible. We hope this surgery will give him a good start,” says Carlene Anderson, Mason's cautiously optimistic mom.

But I'm not the only one who was fortunate enough to experience major positive results from this surgery. Eight-year-old Aidan Visentin of Brampton, Ont. had his SDR surgery in 2014 and has already made great strides.

“Pre-operatively, Aidan had the beginnings of major joint and orthopaedic deformities,” says Aidan's mom Stephanie, explaining that he had early signs of bone deformities in his feet, soft rounded heels, under-developed leg muscles and 20 per cent subluxation in his hip.

“Aidan has made great leaps and bounds from where he was pre-surgery. Although he walks with the assistance of canes, he sometimes chooses to walk without them as well. We have also seen improvements in Aidan's fine motor skills, speech and overall confidence. His spasticity is non-existent.”

If it sounds too good to be true, watch this video of Aidan before and after his surgery, and judge for yourself:

Numerous scientific studies also show that these improvements are generally maintained into adulthood with post-op physio therapy done for maintenance.

In 1987, two years after I was born, my neurosurgeon Dr. Paul Steinbok performed the first SDR in Canada. In the late ‘80s and early ‘90s, I was among a number of my peers with spastic cerebral palsy to undergo the procedure at Vancouver's Children's Hospital. In fact, so many of my friends had the surgery at the time that it might as well have been a routine surgery for us.

Of course, my friends and I were each evaluated for our suitability for the surgery on an individual basis, but if you're a child with spastic cerebral palsy in Ontario, like Aidan or Mason, it's currently extremely difficult to even get that chance.

SDR not performed in Ontario

Currently, there's no surgical program for SDR in Ontario, so no neurosurgeons perform the surgery in the province. Technically, SDR is covered by the Ontario Health Insurance Plan [OHIP], but since no doctor performs it, patients need to look elsewhere for the surgery.

In Canada, the surgery is performed by Dr. Steinbok in Vancouver and Dr. Jean-Pierre Farmer in Montreal. Though both are widely regarded as excellent surgeons by their peers, the surgery is only performed 12 to 15 times a year in Montreal and Dr. Steinbok has only done it 250 times in 28 years. That may seem like a lot, but Dr. Tae Sung Park of the St. Louis Children's Hospital's Cerebral Palsy Center has done 3,200 SDRs over the same 28-year period.

“W

e do six to seven SDR surgeries a week,” says Dr. Park. “We have 1,017 adults who received SDR from me during their childhood. None of them came back to me with long-term complications. [SDR] is a safe procedure in the long term; children do improve as we expect before surgery.”

Dr. Park specializes in a single-level laminectomy, which only removes part of the vertebrae, which he believes is better because it doesn’t cause long term spine deformities or back pain. In 2006, after a visit with Dr. Park, Dr. Steinbok began performing single-level laminectomies in Canada. Dr. Farmer is also recognized as a skilled surgeon, performing multi-level laminectomies, which remove part of the vertebrae from five to six levels of the spine.

With Mason's hydrocephalus and Aidan's spasticity deformities, both were high-risk patients and their parents wanted to reduce the chance for complications as much as possible. In addition, no other doctor they researched could match Dr. Park's SDR experience and surgical record.

Many other Ontario families with SDR-candidate children believe Dr. Park's hands are the best, even though the Canadian neurosurgeons who perform this surgery also have low complication rates and primarily good outcomes.

An SDR surgery in St. Louis, however, carries a $100,000 price tag. Moreover, to get the out-of-country surgery covered by OHIP, patients must receive an assessment and letter of recommendation from an Ontario-based neurosurgeon – criteria that's proving extremely difficult to fulfill.

Ontario neurosurgeons hesitate to recommend surgery

When they tried to get their children assessed by an Ontario neurologist to get that coveted written recommendation, Carlene and Stephanie found themselves the victims of a bureaucratic quagmire. Carlene says neurosurgeons in Ontario refused to see Mason.

“I cold called neurosurgeons in Ontario to see and assess Mason. I knew if they were willing, they would say he is a good candidate. I spoke directly on the phone with many of them and they all said they were not qualified to assess Mason for a surgery they did not perform. However, no one performs the surgery in Ontario, so what were we supposed to do?”

The Facebook group “Support 4 SDR in Ontario” is filled with countless similar stories to that one: parents hoping an Ontario neurosurgeon will see their children, only to be refused, or maybe be seen by the neurosurgeon, only to have them refuse to write that crucial letter of recommendation.

“Mason has written documentation from Dr, Jean-Pierre Farmer in Quebec saying he is a good candidate and he was told verbally by Dr. James Drake from the Hospital for Sick Children that he is a good candidate. But, Dr. Drake would not write a letter. He told us he did not believe the outcomes of the surgery were as good as we thought – maybe with Dr. Farmer, but definitely not with Dr. Park,” says Carlene.

To get out-of-province SDR sugery performed, an Ontario resident can have the surgery covered by OHIP if they meet certain conditions, including prior written approval from the Ministry of Health. While a letter of recommendation from a neurosurgeon is not required as with out-of-country SDR surgery, families must still get approved, and that's one of the frustrations for Carlene.

"All these families were being denied," says Carlene about the application for funding for out-of-province surgery. "Just recently [in the last few days] the ministry is saying they will pre-approve families for B.C. and Montreal but this was not the case up until now and is only the case because there are so many appeals and [so much] controversy with this surgery."

Of course, SDR doesn't work for everyone and all potential candidates should be assessed by a qualified neurologist before moving on to surgery, but to be told that you are a good candidate and subsequently not getting a letter of recommendation is a different problem. A request to Dr. Drake to find out what diagnostic criteria it would take for him to write a letter of recommendation was not answered.

Doctors from McMaster University in Hamilton, Ont. have previously written letters of recommendation for two children, but when I spoke to Vel Snoukphonh of the Hamilton Health Services’ [HHS] public relations team, she said she was unable to comment on what general diagnostic criteria would meet its recommendation standard.

Calls to other neurosurgeons were met with the same response, and no Ontario neurosurgeons were willing to speak with me for this story. Meanwhile, the diagnostic criteria for children who are good SDR candidates at St. Louis Children's Hospital is publicly available on their website and includes things like being diagnosed with a spastic form of cerebral palsy, having some form of independent mobility, such as walking with an assistive device, and having the potential to improve after the SDR.

A doctor in a haystack

Furthering the challenges Ontario parents face in getting recommendation letters are recent changes McMaster Children's Hospital has made to the approval process. Earlier this year, parents were able to directly arrange an assessment with a McMaster neurosurgeon, but now their family doctor must first refer their child to the hospital's Spasticity Clinic and the multi-disciplinary team there will determine whether the patient will go on to see a neurosurgeon. And even then, the assessment at the clinic doesn’t guarantee the patient will ever meet a neurosurgeon, who then has the final call on whether they are approved for surgery.

The change in policy came about when a couple of direct referrals to McMaster neurosurgeons did not have the complete work-up and pre-assessment they said they did, explains Snoukphonh. By referring patients through the Spasticity Clinic, neurosurgeons can be assured they have had the complete work-up beforehand.

When investigating whether any other children had been assessed and recommended for surgery since McMaster reaffirmed this additional layer of scrutiny, none could be found.

“SDR is only beneficial in a minority of children and maybe that's why there haven't been more sign-offs because ultimately a neurosurgeon would approve the surgery only if they felt that the patient would benefit from that surgery,” says Snoukphonh.

SDR is only a fit in a minority of cases, but many families say they feel as if they are looking for a doctor in a haystack when it comes to SDR approval.

“To date, OHIP has approved three families to have SDR with Dr. Park, but there hasn't been a child approved since May 2015,” says Aidan's mom Stephanie. “Although six children have applied, all have been refused because none of their families are able to find a neurosurgeon to fill out the out-of-country OHIP forms.”

Ontario's Ministry of Health acknowledges the difficulty patients are having fulfilling its requirements for the out-of-country surgery.

“We have heard concerns from families about challenges in identifying the appropriate specialists, and that is why the Minister has asked the ministry to create a plan to help assist families in identifying available experts in Ontario,” says Ontario Health Ministry spokesperson David Jensen.

Community steps up to fill in funding gap

With funding from the Ontario government so difficult to come by, both Stephanie and Carlene reached out to their local communities for help raising money.

“I had never thought of fundraising as an option,” says Stephanie. “The whole idea just seemed so insurmountable and impossible. I couldn’t believe that people would be so giving, and so good. I didn’t want to do the fundraising, perhaps out of my own pride. However, when the odds are stacked against you, you sometimes have to turn to means that you would’ve never considered before.”

In both cases, the community responded in kind, helping both families raise the money through a series of fundraisers and crowdfunding campaigns throughout the year.

“We were stressed at first because we would have had to sell our house to get Mason to St. Louis, but we were willing to do whatever it takes to give him this,” says Carlene. “We are just so thrilled about the overwhelming response from the community. They are the ones that have given him this chance.”

Without such generosity, the only doctor-recommended relief from spasticity in the province comes from temporary, invasive and potentially life-threatening alternatives like Baclofen and Botox – both covered by OHIP.

But Baclofen, a central nervous system depressant and muscle relaxant delivered orally, or through a pump under the skin, and Botox, the drug name for botulinum toxin, have potential complications. Baclofen can lead to drug dependencies and studies have shown complications can arise with the pumps, like disconnection or infection. And Botox, while recommended by Ontario doctors to temporarily alleviate spasticity, is yet to be approved by the U.S. Food and Drug Administration and carries with it warnings from CerebralPalsy.org that suggest it can spread from the area of injection, potentially causing life threatening or deadly symptoms up to three weeks later.

Aidan's mom Stephanie agrees.

“Many children as well as adults have died from botox treatment, not to mention that it usually wears off after three months and after five years kids become immune to it. Therefore, it's no longer effective. No child has ever died from SDR.”

On the contrary, Aidan's prognosis after SDR has never been better. Six months ago, the family visited orthopaedic specialist who concluded Aidan's hip and back were in fabulous shape and the boy would not need the hip osteotomy once thought to be inevitable. The specialist then promptly discharged Aidan from his care.

“SDR changed not only my son’s life but it also drastically changed our whole family's life. Most people think it's all about Aidan being able to walk and no longer requiring a wheelchair for mobility, but it's so much bigger than that,” says Stephanie.

“What's most important to us is Aidan's happiness, confidence and independence. We can honestly say Aidan is far happier now that he doesn't have to constantly battle spasticity.”

As for Mason, he couldn't be more excited for his SDR surgery.

“Mason has been asking every morning if today is his surgery date. He does understand everything going on and is thrilled people have helped him to get this surgery. He wants to walk with blue canes after the surgery. He mentions this all the time and we just smile,” says Carlene.

UPDATE (11/02): Mason's mother Carlene reached out to Aaron Brovermen and Yahoo Canada after the story ran, and says the Ministry of Health have sent her a letter to say that they will be covering the cost for Mason's surgery with Dr. Park. Carlene says that while they have already paid out of pocket for the surgery and travel expenses, they will put the money towards Mason's rehabilitation. What Charlene says is most exciting, however, is the doors this will open for children like Mason who are also seeking the surgery.

"Children still need to be assessed and it is a case-by-case basis," Charlene writes, "but this is still huge. At the beginning of this they would not even consider this... Regardless [of] whether we get the money back, it is now considered an acceptable surgery in Ontario which is a MASSIVE deal. Parents of kids with [cerebral palsy] will now have alternate options!"