First of all I'd like to welcome you to the group and I do hope you like it here with us. I am so sorry you're having such a rough time
, and believe me when I say, I know exactly how you feel. It is hard enough dealing with IIH on a daily basis and living in fear for your vision, and to not have the answers and information you need, makes it even harder.So let's start answering your questions one by one.
Once your surgery is decided, it's usual to have a pre-operative assessment, which is basically checking your blood, blood pressure and general health. They will also go through the surgery with you and you can ask them questions about it. We have a helpful booklet that gives advice on How To Talk To Your Neurosurgeon
They will also ask you to sign a consent form and explain all the risks etc regarding the surgery.
The surgery itself takes up to 2 hours, after surgery you of course will have pain where the wound areas are, which at first is controlled by morphine or oramorph and then your usual pain medication. You may have a headache. You are only intubated during the surgery and not after.
If you have an LP shunt, the wounds will be on your abdomen, and the lumbar area of your spine where they do the LP's. You will experience some back pain and the area there will be painful and tender for a while, sometimes it can last quite a while.
If you have a VP shunt, the surgeon may shave the area on your head where he will make the incision. It depends on the surgeon whether he does or now, and how big an area he does shave, and you can talk to him about that and ask whether it can be as little as possible. Again you will also have a wound on your abdomen which will be painful and tender for a while. The wounds are stapled which makes for a neater scar.
The shunt can take effect quite quickly, your body has to get used to the shunt though. Recovery isn't as long as you think, obviously you wont be able to do strenuous things for a few weeks, but you will be able to do light housework and resume other daily activities within reason, until your wounds are completely healed. Your wounds will have dressings on them so you wont be able to wash those areas, especially washing your hair if you have had a VP shunt. Your wounds have to be kept clean and infection free.
Once the shunt is doing it's job effectively you can go resume a normal life, and the symptoms should be under control. Of course in some cases the shunt doesn't always work the first time, and you can find yourself having revisions to correct it is this is the case. It can block or come loose, and in some cases get infected.
I have had around 9 shunts in total and this VP shunt for 3 years now, I don't have the high pressure headaches or pain that I did before a shunt, although I do get headaches usual with IIH, like Barometic Migraines and Menstrual Migraines. We seem to experience them more than normal people. I have had both LP and VP shunts, and although it was hit and miss for a while with some of them for one reason or another, my quality of life has improved, which has enabled me to start I Have IIH, and be able to use my experience and knowledge to help you and many others.
I know lots of IIH sufferers who have resumed a normal life, going back to work, college, running a home etc with a shunt. You may have bad days and good days still but they will get fewer and far between.
As for your vision, I too have been left permanently partially sighted because of the IIH. It was the reason I had to have my first shunt, they thought it would resolve with it, but it didn't. I have no depth perception or peripheral vision in both eyes, and I also have permanent floaters. It's been 10 years now since I became partially sighted, and although at times a hinderance it has not held me back. So I know from your perspective what it feels like, but the main thing is that by having a shunt, you will not lose anymore vision. Once it's working well there will be no pressure on your optic nerves, and the fear and stress you have worrying about that will go.
Living with a shunt isn't much different to living with any medical aid, such as a pacemaker for instance. It's there to make your life easier by doing what your body cann't, and that is to control your CSF. Like any surgery or anything implanted into your body there are risks involved and you can ask your surgeon all about them. In our booklet above we provide the kind of questions you can ask to make it easier for you.
There can be a better life with the right treatment for IIH, and once everything is under control yours will be too. There are many of us who are shunted who can tell you that our lives have definitely improved.
If you have anymore questions or anything please don't hesitate to ask, and you can PM me, the other Admins or Moderators too.