My son recovering from craniotomy

[dmackerracher]

Hi,

I'm hoping someone may be able to offer me or my son's Physiotherapist a little advice.

Just over a month ago, my son (who is 5 years old) was diagnosed with a brain tumour (a pilocytic astrocytoma). A craniotomy was carried out to remove the tumour. This involved entering the skull via the neck to remove the tumour. Surgery went well, but recovery from the surgery is not going well. It appears we are free of the normal complications of this surgery and his sense of balance and co-ordination has been restored.

Where we are having a problem is restoring mobility to his neck because of the trauma during surgery to his neck muscles. We have been seeing a community physiotherapist twice a week for the last 4 weeks, but we seem to be moving backwards. Most of this appears to be related to pain management - my son is not handling the pain during exercises well. We have reached the point where he loses control and cannot stop crying very early into the visit. The appointment today was basically an hour of him screaming while we try to persuade him to get into a reasonable position to allow the physio to do a small soft tissue massage of his neck.

His neck mobility is very limited, although we suspect a lot of this is psychological for fear of it hurting more. When he wakes in the morning he has a reasonable amount of motion, but as the day progresses, he gradually pulls his chin in towards his neck and tilts his head slightly to one side. By lunchtime, his bite has changed (he normally has an overbite, but by then his bottom teeth are out past his top teeth) and he has almost no movement in his neck. By then he doesn't want to eat (too difficult to chew) has some trouble swallowing (he can still swallow, but looks like he has a sore throat) and starts to slur his words as he isn't moving his jaw.

Our GP has just prescribed Baclofen as a muscle relaxant, but we haven't started it yet due to finding out that is mainly used to treat spastic conditions (don't know if we truly have that) and that he would have to be weaned off it again afterwards. We want to be sure it's a good idea before starting it.

The physio is trying to get an appointment made for hydrotherapy, but we are very quickly running out of ideas. We are starting to get very concerned, especially as it is affecting his eating, but no-one appears to have any options for us at the moment. We're unfortunately in bad timing as it's around the 12th of July and we live in Northern Ireland - work either stops or everyone goes on holiday. We're waiting on a referral for a psychologist to try and help with the situation as well.

So, very sorry for the long post, but I'm really hoping for ideas of anything we can do either to help him relax his neck (which may be all that is needed) or ways of trying to 'trick' him into stretching. He is developing a lot of habits to avoid moving his head, to the point that he happily went round an indoor adventure playground at the weekend without having to move his head once.

Any help would be greatly appreciated.
Thanks,
Donald.

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[gcoe]

Hi Donald

Your son has been through a lot so I think it is reasonable to assume there could be a lot of psychological overlay to the problem

His neck mobility is very limited, although we suspect a lot of this is psychological for fear of it hurting more. When he wakes in the morning he has a reasonable amount of motion, but as the day progresses, he gradually pulls his chin in towards his neck and tilts his head slightly to one side.

The fact that some time during the day he has reasonable mobility would suggest to me that things aren't too dire. The muscle guarding pattern could be due to pain mediated response is the more time his he is up and around the more time stress is on the neck and the more pain he is in so more guarding. This is an unconscious problem. What are his pain levels like as the day goes on? - this may indicate whether this could be or not be the case. If this is the case perhaps he could do some napping or really comfortable lying down during the day even just for half an hour to reduce the pain cycle. Sometimes the application of a warm pack (eg Wheat bag heated in a microwave - but not too hot and wrapped up in a towel, or a good old factioned hot water bottle) while he lies down on it in a very comfortable position can help.

If the surgeon of physio is really adamant that he needs to do the exercises now and not delay it then what about pursuing the psychological component? A good child psychologist might be able to help him. They can often help your son adopt a change in his thinking about what he has been through and what he is experiencing if anxiety is a big factor - which sounds like it is.

Our GP has just prescribed Baclofen as a muscle relaxant, but we haven't started it yet due to finding out that is mainly used to treat spastic conditions (don't know if we truly have that) and that he would have to be weaned off it again afterwards.

You should discuss any possible adverse effects and side effects. Yes it is an antispastic drug and your son doesn't sound like he has spasticity but your GP is probably right in that he may be able to relax more as it targets muscles to relax. Yes Baclofen does have a potential for a withdrawl syndrome but your son might not need very much and as long as the drug is tapered down slowly this may not be a problem. People often don't like the side effects however.


If he is objecting so violently to the physio intervention I am not sure if it is that productive - again if he has been through a lot and if he has reasonable range of motion in the morning and it is only a month - may be the physio could ease off a bit and pick it up as his neck muscle stamina improves. If the physo has good rapport with him and he doesn't mind the massage perhaps emphasising that more might be good. Work on increasing the trust might help. Paediatric physios are often good at turning the exercises into a fun game and that can also help.

Another option is some Feldenkrais or Alexander lessons. If you can find a physio who is good with children and practices one of methods this can be very helpful. A Feldenkrais practitioner is generally very gentle in their approach and communicate that is is safe to move. Hoever I would not go to a lay practitioner - go to someone who understands the medical and surgical problem your son is facing.

[estherderu]

Dear Donald,

Saying anything about your son's condition without having seen him is virtually impossible and very tricky to say the least.

In general I am of the opinion that treating children with physiotherapy should not hurt.
Paediatric physio's are trained to treat children and they often do so with games and exercises. Is you physio specialized in this area?

In general children that have had surgery or fractures heal well and range of motion (ROM) often returns without much extra help.

It is possible that pain does still cause the problems in your son's case. I agree with gcoe that the fact that the pain varies during the day is a good sign.
Ask your son to show you how much pain he has and repeat this a number of times during the day. Also note what he has been doing during this time. This should give you and your therapist a good impression of the possible mechanisms surrounding his problems with ROM and or pain.

Check out the pain faces your son likes best and use that one...

The Faces Pain Scale - Revised
http://www.susheewa.com/blog/uploads/pain_asesss_02.gif
Talarian Attachments browse down a bit for the faces
http://www.instituteforspecialsurger...pain_scale.jpg


Physiotherapists have very little knowledge about medication. Because of this I cannot give you any advice on the Baclofen. You could ask your farmacist or family doctor. On the following website lots of information about post operative pain and medication.
Pain management after day surgery - Information sheets - Children & families - GOSH and ICH


I can say on a personal level that if it were my son, I would not use any medication at all without trying other options first. And what would those options be.....
My first choice would be:
- assessing the pain, trying to make out what it is that hurts and what causes the increase in stiffness
- leaving the neck alone for a number of days, and seeing what the reactions are then
- winding a towel around the neck this gives some support and this might only be needed as the day goes on (use the pain list to check reactions)
- if anything I would use homeopathic medication or ointment
- heat as gcoe suggested.

Again I must stress that it is hard, if not impossible to give specific advice not having seen your son.
As a mother I realize and fully understand that parents will search for all the information they can get if their child is suffering.

Ask you physiotherapist and/or doctor about his or her opinion of the information you have gathered. Together you should be able to find a way to help your son.

As a paediatric physio, I have often found that the parents are right... if a parent doesn't trust something, they are right and it is my professional duty to find a way to help them. Trust your insticts and follow them.
Children are good at telling you what they need... read the signs, they cannot tell you with language, they tell you with their behaviour.
By looking at what he does to ease his pain, of move his neck, could very well give you an idea how to go on.

good luck and the very best wishes for your son.

Esther