What is Botox, exactly? And how can it help with complications from SCI? Dr. Andrei Krassioukov fills us in on botulinum toxin and how it works. Plus, SCI BC Peers Teri Thorson and John Chernesky host a Q&A (29:00) on what’s benefitted them and discuss some things you should consider.
This video was filmed at Rehab Rap, a drop-in peer discussion group held by SCI BC at GF Strong Rehab Centre in Vancouver, British Columbia.
Supported by an unrestricted educational grant from Allergan.
Meet the Panelists
Q. Are you aware of any long-term effects of Botox with regular use?
Dr. Krassioukov: So far we hear that when patients are receiving Botox over many years they may become accustomed to it, though there are no confirmed studies. Histologically, there are studies that are looking into the skeletal muscles and bladder long-term effects.
Dr. Matthias Walter, a Swiss board-certified urologist who has been working in Dr. K’s lab since November 2016, indicated that Switzerland was one of the first countries where Botox was permitted for use with the bladder, so there are about 15 years of history with patients receiving regular Botox shots. For some it works even better over time, sometimes it does not, and for some it doesn’t last as long as it used to, but in general they are all still very satisfied.
Also, with some patients who did not respond after the first injection or the second injection, the majority responded after the third injection, so patients should not give up after the first attempt. We don’t yet really understand why for some it doesn’t work ideally after the first injection, but we need to be aware and look at whether there is presence of a urinary tract infection which can cause destabilization of the botulinum toxin.
John Chernesky: It’s not always a cure-all. It’s not going to completely stop your spasms, it’s not going to stop your autonomic dysreflexia, but it does reduce it and can make your life a lot easier.
Teri Thorson: When people have side effects [like weakness], it could be that you are using certain muscles and you don’t realize it. So if you’re transferring and you don’t realize you rely on certain muscles of your body, and you have Botox in them, you could fall.
Dr. K: That’s what I mean by excessive weakness – the main idea of injecting Botox into skeletal muscles is to make them weaker, but to make them weaker in order to make the person with spasticity more comfortable, have fewer jerks, and to prevent shear stress on the skin when your muscle constantly contracts and damages the skin. But exactly as Teri mentions, the same muscles that, with spasticity, are being used to make this jump from chair to bathroom and back to the chair, spasms are helping to do this movement. If [Botox] makes it weaker, transfers can become different. Then you have to adjust, and that’s reality.
John: I knew someone whose bladder was in constant contraction and used an indwelling catheter, and he had the Botox to allow him to do internal catheters, but his spasms allowed him to sit up independently and do some pretty good transfers. And when he got Botox and those muscles relaxed, he lost a lot of core stability that affected his transfers. But then again, it wears off so it’s not a permanent situation.
Q. John, because you’re incomplete, do you find that things in your surroundings – stressors for example – affect your spasms more?
John: Yes, absolutely. No doubt about it in my mind. For me, stress, adrenaline, diet, like eating a sweet doughnut that’s full of sugar, boosts up my sugar levels and insulin levels, and then my spasticity levels go up.
Q. Do you practice any other ways of calming yourself?
John: Absolutely, I’ve tried meditation and breathing techniques, calming myself and calming my body, try to eat well and keep well-hydrated. I don’t have the perfect recipe, but definitely if you get excessively agitated, too much caffeine, Coca-Cola can affect your spasticity.
Q. Will Botox for bladder work in a male with previous sphincterotomy and if there would be an issue with leaking in between caths? (I did get a lot of my tone back there after as it’s been 12-15 years since the sphincterotomy.)
Dr. Walter: Sphincterotomy is a straight muscle that we can always access, versus the detrusor muscle that allows us to not leak. So if you have a sphincterotomy that means it does not work. And now it depends on when the sphincterotomy was performed, because over time it will scar, and create a narrowing of the outlet of the bladder. So depending on the sphincter situation, the condition of leaking is not changing by Botox because it just allows the bladder to have more volume over a certain time until you have a sensation or autonomic dysreflexia kicks in, but it does not change the work of the sphincter. In other patients you can also, if it’s too spastic, inject Botox into the sphincter to reduce the spasticity of the sphincter. This is depending on the situation of the sphincter, and it doesn’t change the bladder. So it is possible to use Botox for bladder in a patient with a previous sphincterotomy because it acts on the bladder wall not the sphincter, unless it is specifically used to treat the sphincter.
Dr. K: I would recommend we review your recent urodynamics with a urologist, to see at what point leakage is occurring. Botox for bladder works on the smooth muscle of the bladder, so if that is identified as a cause of leakage, then Botox may be useful.
Q. I had Botox in my bladder four months ago and I have had a UTI ever since that won’t clear up including spasms that are ruling my life. I am also sweating like crazy below the level of my injury on one leg and in the middle of my back. Do you have any other thoughts other than more baclofen? I’m already taking over double what I was trying to control them.
Does this mean a second try isn’t worth it?
Dr. K: No – as we heard from Dr. Walter, the first trial might be associated with a UTI and should be investigated for any underlying causes that might be present. If you continue to experience AD, it should be investigated, but beyond that it is a personal choice to try again.
We do know that even with an unsuccessful attempt, the second could be much more successful.
Q. Is there any difference in success with different types of botulinum toxin?
Dr. K: I don’t have this experience particularly with the bladder and we only have one option at our Vancouver site. I do occasionally inject Zyman, I see similar effects. One patient with Zyman later switched to Botox.
Dr. W: You must be aware how you’re emptying your bladder. If you’re not doing any intermittent catheterization, it could be the case – by tapping or [other voiding methods], which we do not recommend. Your urologist must be sure you do not have any residual volume (of urine). If you cannot empty the bladder completely, there’s no way you’re getting rid of the UTI. This is the most crucial thing to have the Botox [for bladder] – to be able to empty your bladder completely.
Dr. K: Any bladder procedure brings the risk of UTI. This is why we recommend antibiotics before the procedure, and must ensure that you do not have a UTI going in to the procedure.
Jocelyn: One of the things I hear the most is that people are so happy to have Botox for bladder and not have to pee so frequently that they forget to go, and they go all day without voiding, and I know that that would leave you with a huge amount of urine in your bladder which would be an infection risk as well as a risk for AD.
Q. Would that have a negative effect on your kidneys and what’s the best amount to go?
Dr. K: If you’re doing it once, it’s okay. If you’re doing it on an everyday basis, we worry it could cause hydronephrosis, damage to the kidneys. If you don’t remember you need to go every four hours, put an alarm on your phone for every four hours. The typical recommended volume is about 400cc, some females have less. Beyond that, patients develop reflux of urine into the kidneys.
The best indication of how often to go is by how big your bladder gets based on urodynamics – a urologist will tell you if you’re in danger. At a certain point, it is dangerous. That’s why we recommend once a year you see a physiatrist and urologist.
Q. If you got Botox and are catheterizing every four hours, obviously it will reduce your indication of UTIs, correct? Does it disappear completely?
Dr. K: Yes.
Teri: I’ve never really had a problem with UTIs. I have always managed my bladder with not drinking too much at night, I don’t set an alarm. I will wake up if I have to go, and I still get a bit of AD, like a flushing or pins and needles sensation. I feel spasms or tight and I will wake up.
Dr. K: Proper hydration throughout the day is absolutely crucial for individuals with SCI but proper timing of hydration is absolutely essential. Reduce fluid intake at night before bed so you don’t have excessive volume in your body or need extra catheterization. Throughout the day take in 2.5L per day for the positive effects on bladder health.
John: One of the positive side effects of Botox I’ve seen for Teri is that she drinks more water now because the urgency to urinate is a lot less, and she feels more confident drinking more water throughout the day, which is good for you.
Q. I don’t wake up every four hours to pee – is that bad? I can go seven or eight hours.
Dr. K: It all depends on the volume. If after seven hours the volume is 400ccs, you’re safe. If after seven hours your volume is 1200ccs, you are in trouble.
Everyone’s bladder is different. I start by having a long conversation with each patient about their bladder. There are totally different bladders and patterns. You have a conversation about fluids, injury levels, responses – each person is a different story.
Q. Botox doesn’t necessarily mean you stop taking your medications, right?
Dr. K: In this case you have to make your decision according to recommendations by doctors. What to take, when to take it and when to stop. For example, Botox was effective with spasticity – the main idea is to reduce anti-spasm medication to reduce the impact on the brain.
Teri: Something else to consider is the needle for Botox for bladder is not covered [by provincial medical insurance].
Dr. K: Just the needle isn’t insured. The Botox itself is covered by pharmacare and by extended health insurance.
Jocelyn: WorkSafe covers the needle but other insurers don’t. It can be one of the challenges.