Idiopathic intercranial hypertension

[frankie2010]

Hi. Just wanted some advice on how best to support my 26 year old daughter as feeling pretty helpless at the moment. She was diagnosed with fibro myalgia years ago and over the weekend which we spent in hospital she's now got idiopathic intercranial hypertension. She has vision loss, she had a lumber puncture and fluid removed as pressure was way to high retested it went straight back up again. She's suffered years and years with deadly migraines, asthma, fibro, of which we've managed to cope eventually but now this. She spends most of her time asleep new meds turned her into a zombie. I don't know how best to support her, words comfort I do all that but it just doesn't seem to be enough, in my book anyway I feel I need to do more. She's terrified she's going to go completely blind. I understand how she feels about her life right now she's only young and she is bedridden most of the time. Help!!

[Marnie22]

Hi. I have sent you a private message.

[Jacs]

Hi Frankie2010, I can’t help I’m afraid but wanted to reach out and give you a virtual hug. Your daughter sounds like she is having an awful time and I know how helpless it can feel when there is no easy answer. Regardless of age, our kids are our kids and we just want them to be healthy and happy and would do anything to swap places and take their pain away. I’m sure she appreciates your support and love and hope she gets some answers soon and can start to recover.

🤗🤗🤗

[frankie2010 in reply to Jacs]

Thank you so much for your lovely thoughts and hug it is appreciated

[bridgeit]

Hi Frankie, how terrifying for both you and your daughter.Based on my experience, NOT medical training, I can offer the following:

In my personal experience, I think the best specialist to see in the UK about IIH is Dr Nick Higgins, a leading interventional neuro-radiologist based in Addenbrooke's Hospital Cambridge. Dr HIggins is a tertiary consultant so your daughter would need a referral to see him from a consultant neurosurgeon.

Be aware: Dr HIggins' work in this particular field is not, to my knowledge, available on the NHS, though he has patients who see him for treatment of IIH from all over the world. The costs are not cheap. However, it might be worth exploring the possibility of at least asking if your daughter's comprehensive cranial MRI/venogram can be assessed by Dr Nick Higgins for his professional opinion of the underlying problem and options for treatment. If your daughter has not already had this scan, my advice is to ask her neurosurgeon to arrange one. If you encounter obstacles owing to NHS limitations, you might want to consider the private route for a scan and its assessment. A specialist who works closely with Dr Nick Higgins in Cambridge is Mr. Richard Mannion. He may be the best first port of call to assess your daughter's condition if you choose to go down the private route.

I hope this is information is of some use and the best of luck to both of you.