Hello. Thanks for asking from HCM.
I can understand your concern. It is very sad that your daughter has suffered so much. From your history it is clear that she is having "Shunt overdarinage syndrome" and her intracranial pressure (ICP) is very low. One good point in your daughter case is that she is conscious and oriented.
Shunt over
drainage is a managable condition. Usually it resolves on its own with some time. But it did not happen in your daughter's case. She has already taken painkiller and
bed rest for last 2 years and it has failed. Ask her to take plenty of fluids to prevent
dehydration and low pressure.
We have to give her next line of treatment. I am giving you few options which we do at our hospital
: Shunt ligation trial - It is a little bit crude method. We tie shunt just above
clavicle and observe patient. You can ask it from your doctor. If her symptoms progressively improve and she does not develop signs of raised intracranial pressure (ICP), it can be left as such. No further treatment will be needed except regular follow up. But if it fails and she develop features of raised ICP, then other options should be considered
: High pressure shunt - It is a type of shunt device in which brain fluid (CSF) is drained only if pressure is high (usually more than 100mm H2O). Thus it prevents oevrdrainage of CSF and relieves pain.
: Programmable ventricle-peritoneal shunt - This type of shunt has the advantage of adjustment of opening pressure according to intracranial pressure (low or high) using external magnetic device. According to your question, it appears that this device has been used in your daughter. If not, you can ask for it.
: Endoscopic third
ventriculostomy - In this procedure, surgeon makes an opening in
third ventricle (natural CSF reservoir) and establishes communication between it and CSF draining region of brain. But it can only be done in case of dilated ventricles. While in case of over drainage, ventricles are very narrow. To attempt this procedure, shunt ligation and dilatation of ventricle can be done if patient can safely tolerate.
Advantage is complete disappearance of over drainage symptoms.
: Lastly change VP shunt into ventricle-
cardiac shunt - It leads to shortening of shunt length and thus "siphon effect" or negative suction pressure. It leads to less overdrainage. But ventricle-cardiac shunt has more chances of other complications like blockade/cardiac complications/infection.
You can discuss all these possibilities with doctor. Hope it will help you. Don't be disappointed.
Thanks. Take care.