Technical problems have prevented us from uploading the full video of the presentations by Dr Park and Deanna Walter. However we took a note of the questions and answers after the session, and Dr Park and Deanna have approved the summary below as an accurate record.
Question and Answer Session
Q. Can balance reactions develop that were not there before due to lack of normal reflex development?
A. Yes. The underlying reflexes do persist.
Q. In patient selection do you not recommend SDR for children with dystonia?
A. There is often a problem with definition, and it is not simply fluctuating tone... dystonia is associated with a particular posture, and is very rare in children with spastic diplegia. It is more usually associated with quadriplegia, but can be hard to diagnose when masked by spasticity. The outcome for SDR in these children will be influenced by the presence of dystonia, and parents are cautioned about this. In general we will carry out SDR if spasticity is the predominant difficulty.
Q. What can be done about knee hyperextension?
A. This can be difficult to address, and is often the result of tight heelcords, so release is needed and the correct bracing. Knee hyperextension may persist in lots of patients. A careful combination of bracing, strengthening and taping helps, but we avoid putting children in AFOs wherever possible in order not to inhibit muscle strengthening.
Q. What is the incidence of patients needing foot arthrodesis post SDR?
A. In our experience patients rarely require this surgery if they have SDR before 5 years of age. It should be avoided wherever possible as it can lead to painful arthritis.
Q. Is SDR effective for a child with quadriplegia and low tone?
A. Regarding the low tone, single level SDR does not weaken the trunk, and has the potential to facilitate strengthening of weak trunk muscles. Regarding quadriplegia, we do not usually carry out SDR if the child does not have the potential to walk. For reasons that are not known, spasticity can recur quite often for children with quadriplegia, sometimes to levels as severe as before the SDR, and sometimes dystonia can take over and muscle tone can end up similar. We always ask parents what they want to achieve. Comfort and personal care are often the goal, and it can be very difficult to turn them down, but our goal is the ability to walk by some means.
Q. What is the St Louis experience with patients with GMFCS level 1?
A. It is very important to remember that these children will eventually decline and age prematurely. SDR can arrest and even reverse this decline. People with mild spasticity who have SDR can continue to be active citizens requiring little support, whereas adults with even minimal disability suffer compared to those with no disability. We have seen adults with such mild spasticity they were not diagnosed until their 20s, who had started to age prematurely. After SDR (e.g. at age 40) they had regained the ability to work out and run and return to previous activity levels.
Q. Do you make predictions?
A. Based on experience we can predict. If the child has toe movements they will normally walk independently. If the child can dorsiflex that is an indicator for independent walking. Being able to move quickly is also a factor that will suggest independent walking is possible. Triplegic patients can also become independent walkers. We like to give predictions as this can be very important and reassuring for parents.
Q. Do you offer SDR to patients with HSP?
A. We now offer this. Beforehand we refused to carry out SDR. We have since discovered that a patient who had had SDR ten years previously in fact had HSP, but this was not known at the time. It became apparent when one of her children started walking on toes. Her SDR did remove spasticity permanently. A have operated on 5 or more patients and are looking to do more now, which will help us add to the research.
Q. There are examples of people who have made great physical progress with spasticity present, through vigorous exercise. Have there been any studies examining children with and without SDR as a function of exercise levels?
A. No, there have not. But the point is that you need SDR to avoid premature ageing.
Q. Do you carry out SDR on children with hip migration, and what impact does SDR have on this?
A. For children with hips approaching 50% uncovered it is likely that they will need hip surgery before SDR, particularly if aged over 5 years. If hips are nearer to 30% uncovered then they will very often improve after SDR. We prefer to wait a year or so after SDR before carrying out any required hip surgery.
Q. Children work extremely hard after SDR. For how long is this intense input needed?
A. This depends very much on the child. Often children will need to exercise and strengthen with increased intensity for 3 years. Sometimes children will need an intense period to get through a period of rapid growth. Our aim is to get children to a position when they are engaging in active sporting activities, rather than therapy.
Q. Do children have any residual spasticity after SDR?
A. Generally for those with diplegia, no they do not. Quadriplegic children can see some spasticity returning. Adults who have SDR are more likely to retain some spasticity. Our aim is to eliminate as much spasticity as possible. There is one research paper that has compared the outcomes for people who have had SDR in different hospitals as a function of the degree of spasticity that remained post SDR. This paper showed that if more spasticity is retained you will see less functional improvement,
Q. What measures do you use to compare children before and after? Do you include gait analysis?
A. We carry out a GMFCS test before and after and measure spasticity on the Modified Ashworth scale. We video patients before and after but do not carry out gait analysis.
Question and Answer Session
Q. Can balance reactions develop that were not there before due to lack of normal reflex development?
A. Yes. The underlying reflexes do persist.
Q. In patient selection do you not recommend SDR for children with dystonia?
A. There is often a problem with definition, and it is not simply fluctuating tone... dystonia is associated with a particular posture, and is very rare in children with spastic diplegia. It is more usually associated with quadriplegia, but can be hard to diagnose when masked by spasticity. The outcome for SDR in these children will be influenced by the presence of dystonia, and parents are cautioned about this. In general we will carry out SDR if spasticity is the predominant difficulty.
Q. What can be done about knee hyperextension?
A. This can be difficult to address, and is often the result of tight heelcords, so release is needed and the correct bracing. Knee hyperextension may persist in lots of patients. A careful combination of bracing, strengthening and taping helps, but we avoid putting children in AFOs wherever possible in order not to inhibit muscle strengthening.
Q. What is the incidence of patients needing foot arthrodesis post SDR?
A. In our experience patients rarely require this surgery if they have SDR before 5 years of age. It should be avoided wherever possible as it can lead to painful arthritis.
Q. Is SDR effective for a child with quadriplegia and low tone?
A. Regarding the low tone, single level SDR does not weaken the trunk, and has the potential to facilitate strengthening of weak trunk muscles. Regarding quadriplegia, we do not usually carry out SDR if the child does not have the potential to walk. For reasons that are not known, spasticity can recur quite often for children with quadriplegia, sometimes to levels as severe as before the SDR, and sometimes dystonia can take over and muscle tone can end up similar. We always ask parents what they want to achieve. Comfort and personal care are often the goal, and it can be very difficult to turn them down, but our goal is the ability to walk by some means.
Q. What is the St Louis experience with patients with GMFCS level 1?
A. It is very important to remember that these children will eventually decline and age prematurely. SDR can arrest and even reverse this decline. People with mild spasticity who have SDR can continue to be active citizens requiring little support, whereas adults with even minimal disability suffer compared to those with no disability. We have seen adults with such mild spasticity they were not diagnosed until their 20s, who had started to age prematurely. After SDR (e.g. at age 40) they had regained the ability to work out and run and return to previous activity levels.
Q. Do you make predictions?
A. Based on experience we can predict. If the child has toe movements they will normally walk independently. If the child can dorsiflex that is an indicator for independent walking. Being able to move quickly is also a factor that will suggest independent walking is possible. Triplegic patients can also become independent walkers. We like to give predictions as this can be very important and reassuring for parents.
Q. Do you offer SDR to patients with HSP?
A. We now offer this. Beforehand we refused to carry out SDR. We have since discovered that a patient who had had SDR ten years previously in fact had HSP, but this was not known at the time. It became apparent when one of her children started walking on toes. Her SDR did remove spasticity permanently. A have operated on 5 or more patients and are looking to do more now, which will help us add to the research.
Q. There are examples of people who have made great physical progress with spasticity present, through vigorous exercise. Have there been any studies examining children with and without SDR as a function of exercise levels?
A. No, there have not. But the point is that you need SDR to avoid premature ageing.
Q. Do you carry out SDR on children with hip migration, and what impact does SDR have on this?
A. For children with hips approaching 50% uncovered it is likely that they will need hip surgery before SDR, particularly if aged over 5 years. If hips are nearer to 30% uncovered then they will very often improve after SDR. We prefer to wait a year or so after SDR before carrying out any required hip surgery.
Q. Children work extremely hard after SDR. For how long is this intense input needed?
A. This depends very much on the child. Often children will need to exercise and strengthen with increased intensity for 3 years. Sometimes children will need an intense period to get through a period of rapid growth. Our aim is to get children to a position when they are engaging in active sporting activities, rather than therapy.
Q. Do children have any residual spasticity after SDR?
A. Generally for those with diplegia, no they do not. Quadriplegic children can see some spasticity returning. Adults who have SDR are more likely to retain some spasticity. Our aim is to eliminate as much spasticity as possible. There is one research paper that has compared the outcomes for people who have had SDR in different hospitals as a function of the degree of spasticity that remained post SDR. This paper showed that if more spasticity is retained you will see less functional improvement,
Q. What measures do you use to compare children before and after? Do you include gait analysis?
A. We carry out a GMFCS test before and after and measure spasticity on the Modified Ashworth scale. We video patients before and after but do not carry out gait analysis.
