How is IIH treated?
The majority of people with will have medical (drugs) treatment for IIH and headaches. Less than 1 out of 10 people with IIH will have surgical treatment. 9 out 10 people with IIH are overweight and weight loss has been found to be the most effective treatment. For further information on weight loss see the IIHUK Weight and IIH leaflet.
Medical treatments for IIH have been assessed by a medical review body (the Cochrane review) and they have suggested that more trials are required to understand what are the best drug and surgical treatments for IIH.
Acetazolamide (DiamoxTM) is often prescribed for IIH, for further information on acetazolamide see the IIHUK acetazolamide drug information leaflet.
Long Term Prognosis
Some patient’s symptoms may spontaneously disappear, for others a combination of medical and/or surgical treatments control their condition and they are able to lead relatively 'normal' lives. For others both medical and surgical treatments can be limited in their effectiveness and symptoms may remain. For these patients, treatments with combinations of painkillers and other medications are required to control the symptoms although their effectiveness varies.
There are two main types of surgery:
- Shunt surgery – one end of a flexible tube is put into the fluid filled space in your brain (ventricle) or your spine (lumbar) and the other end in another part of your body, such as your abdominal cavity (peritoneum).
- Optic nerve sheath fenestration – a small window is created in the layer (sheath) around your eye nerve to allow the fluid to drain away.
For further information on surgery in IIH see the IIHUK shunt surgery in IIH and optic nerve sheath fenestration leaflets.
The IIH:WT (weight trial) has shown that for those IIH patients with obesity, gastric surgery is proven to reduce pressure, headache and quality of life for people with IIH. You can read about this trial in the research area.
How do you treat headaches caused by IIH?
There are no drugs specially designed for IIH headaches. There is evidence that weight loss improves headaches in IIH (Newborg1974;Kuppersmith1998; Johnson 1998; Sinclair 2010).
Your health care professional may use medications to help with the headaches. For further information on headaches see the IIH UK Headache in IIH leaflet.
There is now definitive evidence that weight and IIH are related. Weight loss has been shown to be the only treatment to modify the underlying condition. Over 90% of patients diagnosed with IIH are overweight women, suggesting that there is a link between obesity and IIH. Recent studies have shown that weight loss is an effective treatment to reduce papilloedema and headaches, putting IIH in to remission. The IIH:WT has shown that a 24% reduction in body weight is required to normalise Intracranial Pressure (ICP) reduce headache and improve quality of life.
Surgical intervention is usually only undertaken in severe cases: for example, to protect vision or when medications and other treatments are unsuccessful or not tolerated. There are a range of intervention options including:
Lumboperitoneal (LP) Shunt
This surgery involves diverting excess CSF by inserting a catheter into the subarachnoid space (spinal fluid filled space in the spine) around the patients waist and in to the peritoneum (abdominal cavity). Some LP shunts have a valve system and CSF reservoir.
Ventriculoperitoneal (VP) Shunt
This surgery involves diverting excess CSF by inserting a catheter in to a lateral ventricle (fluid filled space within the brain) down through the neck and into the peritoneum. All VP shunts have a valve system and CSF reservoir.
A Ventriculoatrial (VA) Shunt
Surgery is similar to VP shunt surgery diverting excess CSF to the 3rd Atrium of the heart. Some patients have shunt systems that drain the excess CSF to the pleura of their lung.
Special Subcutaneous Lumbar Shunt
This has been developed so that it can be placed in position using local anaesthetic only. Shunt surgery has proven to be a successful long term relief from IIH symptoms and raised ICP. However for many patients, malfunctions, infection, kinking, blockages and over-draining of shunts are experienced, leading to frequent shunt revision surgery. All surgeries carry risks, can be stressful and have an emotional and physical effect on a patient. Discuss any surgical options with your Specialist to ensure you have all the facts.
Venous Sinus Stenting
Is also used as a surgical procedure for people with IIH who have Venous Sinus Stenosis. Stent surgery is performed after CT venography and manometery investigations. If the patient is found to be a good candidate, a stent is placed within the venous sinus and dilated which can result in the reduction of pressure and relieve symptoms. Stenting is undertaken in specialist hospitals, but to date, no long term evaluation has been on its success on treating IIH in the long term. A new trial is being developed to see which is the most effective treatment. Shunt versus Stent.
ONSF (optical nerve fenestration)
May be considered (very rarely) if vision is severely affected or threatened. In this procedure, the sheath surrounding the optic nerve is slit, or a 'window' cut into the sheath to relieve the pressure on the nerve and allow the CSF to escape. ONSF is very effective at relieving the pressure on the optic nerves and thus helps to resolve papilledema. However the amount of CSF drained due to this procedure is negligible. ONSF has little effect on the overall ICP and can lead to complications including blindness.
Getting the Right Advice
IIH isn't an immediately life threatening condition, but for some people if symptoms cannot be brought under control, it can be a life changing condition. The dangers of unmonitored raised intracranial pressure are life threatening. However, the main risk to life with IIH stems from repeated surgical intervention to insert shunts particularly in the brain.
IIH UK is currently compiling a list of experts who can be contacted by hospitals, Dr’s and Consultants. The list will also be helpful for patients to know which Hospitals in their area have the services and expertise that they need.
IIH UK is also working with IIH experts to encourage widespread knowledge amongst all UK medical staff about IIH and encourage doctors, surgeons and ophthalmologists to contact each other when needing further help or advice when dealing with this deeply complex condition.