denied? don’t lose hope!
If you applied for SDR and didn’t get a yes, this page is for you. The steps below outline the way forward.
STEP 1: CONSIDER A SECOND OPINION
Many SDR surgeons differ in their criteria for SDR patients. Dr. Park in particular tends to accept many patients who are denied by other surgeons. Regardless of the reason, if you (or your child) were evaluated and rejected by a surgeon other than Dr. Park in St. Louis, I would encourage you to submit an application to him and his team. (See the how to apply page under the Planning tab if you need help applying.)
In some cases, rejection can even be good if you’d like to pursue SDR out-of-state (e.g., in St. Louis). Some insurances will only cover out-of-state SDR if an in-state surgeon won’t perform the surgery.
STEP 2: CONSIDER WHY YOU GOT A NO
Brain/Spine Issues:Some people are turned down because their MRI shows additional brain or spine issues that suggest they wouldn’t benefit from SDR, or genetic testing suggests a diagnosis other than CP or hereditary spastic paraplegia (HSP) that wouldn’t be improved by SDR. Spine problems (such as severe scoliosis or if someone had a spinal fusion to correct scoliosis) can make it difficult or impossible for the surgeon to safely access the area they need to operate on during SDR. SDR is likely not an option in these cases, but it’s better to find out that you’re not a candidate than to go through a surgery that won’t end up helping. And there are still options that can help! Check out the end of this list.
Hip Dysplasia:Some people have hip problems (most often, severe hip dysplasia) that would prevent them from being able to adequately participate in rehab afterward. Hip dysplasia is fairly common for people with CP, especially if they aren’t able to stand or walk independently. Oftentimes, SDR can (and should!) be done before trying to surgically correct hip dysplasia. Removing spasticity could help keep the hips from moving farther out of the socket, possibly help the hips move back into the socket (especially if the child is under 5 years old), and—if hip surgery is eventually needed—having SDR first can allow for a more comfortable recovery because the muscles won’t be as tense. However, in severe cases, sometimes hip surgery needs to be done first, and after the child has recovered, they may be a candidate for SDR.
Dystonia:Dystonia is a type of tone characterized by random, twitchy, on/off muscle contractions. SDR does not help dystonia, and oftentimes it’s hard to tell that someone has dystonia when they also have spasticity. My understanding is that spasticity layers on top of dystonia, and because spasticity causes the muscle to be “on” so often, spasticity masks the “off” phase of dystonia, making dystonia difficult to detect. After SDR, when spasticity is gone, dystonia can become more apparent. Dystonia is also tricky because it’s often due to an injury in an area of the brain called the basal ganglia, which is in charge of involuntary movements—but this brain area takes a while to develop, so dystonia often doesn’t appear until middle childhood. Still, according to Dr. Park, dystonia is overdiagnosed in CP: Many doctors say that somebody has dystonia when they really just have spasticity. Many of his patients have reported this as well, saying that they were rejected by another surgeon who said they had dystonia, and then they were accepted by Dr. Park (who did not believe they had dystonia), and after SDR, they found that Dr. Park was correct. Dr. Park will also accept patients for SDR who have dystonia as long as spasticity appears to be their primary issue. However, if dystonia is the primary issue, SDR will not be helpful. In that case, see the end of this list for other treatment options.
Weakness:Sometimes, people are told they’re too weak for SDR or that SDR will cause weakness. (The idea that SDR causes weakness is a misconception; see Myths & Facts.) Children and adults with more involved CP sometimes need to build strength before they’re accepted for SDR, so if you have been rejected for this reason (and have sought a second opinion), don’t despair. Plenty of people have managed to build strength and have then gotten accepted. Some centers (typically not St. Louis) also perform palliative SDRs. Usually, one of the main goals of SDR is to improve motor function. However, palliative SDR is SDR surgery performed only for comfort and pain relief. (Sometimes, surgeons cut an even higher percentage of nerves for palliative SDRs, or they further reduce tone by cutting motor nerves too.) I have heard of several people who have pursued palliative SDRs for their children and have been quite happy with the results. However, do keep in mind that people with more severe CP sometimes have spasticity return after SDR; if their CP is very involved (i.e., they can’t walk even with assistance and can’t sit independently), spasticity may even come back completely.
Weight:Sometimes, adults receive a “not yet” because of a high body mass index (BMI). Extra weight can make an already difficult recovery even harder. Losing weight to qualify for SDR can be difficult, especially when your disability limits your exercise options, but seek the guidance of a health professional who can guide you through the process safely.
Age:Different centers have different age ranges they will accept for SDR. The St. Louis SDR center is probably the most inclusive: Dr. Park accepts patients between the ages of 2 and 50. Some centers do not accept patients until they’re about 5 or 6 years old, because they believe that’s when they’ll be able to fully participate in rehab. But I think that in most cases, the earlier you can have SDR, the better, because the effects of spasticity build up over time and create tremendous stress on bones, muscles, and joints. Also, younger children have greater neuroplasticity, which means that their brains are more capable of adapting. This may translate to an easier recovery and a better long-term outcome. Post-SDR rehab can be done with very young children; it just needs to be tailored to their developmental needs, which often means disguising it as play. On the opposite extreme, many centers will not accept adults, believing they are too old to benefit from SDR. I had SDR at 23, and more and more centers are following Dr. Park’s lead and are operating on teenagers and adults. The recovery is often harder for adults (especially older adults, in their 40s) and the risks of side effects are greater (many have some long-term numbness; some older adults, particularly those in their 40s, have reported chronic nerve pain). At this time, those side-effect risks are the reason that Dr. Park (and likely other surgeons too) haven’t expanded SDR to adults above the age of 50. But so many post-SDR adults agree that it’s worth it … even life-changing. So—if you’re an adult, don’t count yourself out as a candidate.
STEP 3: EXPLORE OTHER OPTIONS
iEven if you aren’t a candidate for SDR, know that there are still many wonderful options available to you. You don’t need to have SDR in order to have a beautiful, fulfilling life. Take a look at the list below, and remember that there isn’t just one path to success. Maybe you’ll want to check out your other surgical options, but if not? That’s okay too—maybe an exercise program is more your speed right now, or you’d like to try out a vibration plate! Just know this: You have options. ♥
- Read Dr. Karen Pape’s book, The Boy Who Could Run But Not Walk. Dr. Pape’s stance is that the young injured brain is far more adaptable and heal-able (i.e., neuroplastic) than we’ve previously realized. She describes many different treatment options that may help children with CP reach their full potential, including many different kinds of therapies and surgical intervention. Dr. Pape passed away in 2018, but her resources are tremendously informative. You can also check out her website, which links to her blog as well.
- If your primary issue is dystonia, ask your doctor about Sinemet: a medication that’s typically used to treat Parkinson’s disease dystonia but that has been found to be effective for CP dystonia too.
- Try a vibration plate. Research is ongoing, but this treatment shows tremendous promise for people with all types and severities of CP. The vibration plate page on this site might be a good starting place if you’re just learning about this option.
- Try an intensive, as intensive PT with a knowledgeable therapist has also been shown to make a huge difference for people. Alternatively (or in addition), many people have had amazing luck with personal trainers, myself included. You might have to shop around to find one who is comfortable working with someone with a disability, but once you do … it’s so worth it!
- Check out the equipment list and exercises list on this site if you’d like some ideas for a targeted home exercise program.
- If you have shortened tendons that are causing pain or otherwise giving you trouble, you might consider PERCS.
- Other surgical options could include deep-brain stimulation (DBS) for dystonia or a baclofen pump for dystonia or for spasticity in those that don’t qualify for SDR. DBS tends to be less effective for CP dystonia than for Parkinson’s dystonia, and the pump definitely has its drawbacks, but these are options worth thinking about if SDR is not an option. (As an FYI, this 2018 case study suggests that a pump may be more effective for dystonia compared to DBS.)
- Some people try stem cells. Research is still limited in this area, and stem cell research is still in its infancy, so please be extra careful with this option. For example, this New York Times article, “A Cautionary Tale of ‘Stem Cell Tourism,'” shares the story of a man who pursued stem cells after a stroke. The stem cells caused a spinal cord tumor that paralyzed him from the neck down, and doctors cannot figure out how to remove the tumor. That said, some initial clinical studies from Duke University show promising results, at least for children. FIFIANDMO blogged about their stem cell journey, and there’s a 60 Minutes segment about a little girl with CP, Isabella Lombardo, who also pursued this treatment (part 1; part 2; Team Isabella Lombardo page). Both of these families believe that stem cells have helped their daughters make progress. These children are also post-SDR, but SDR is not necessary to pursue stem cell treatments.