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 AD diagnosed 2009

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PostSubject: AD diagnosed 2009   Thu Dec 22, 2011 6:08 am

Hello all! I am a 26 year old single mother to three. I have been battling IIH since November 2009. After two years of failed attempts to find a neurosurgeon to take on my surgery due to lack of insurance, I am finally getting some help. I have lost all of my color vision, as well as all peripheral vision in my right eye due to the pressure that is being placed on my optic nerve. I recently recieved the terrifying news from my Opthamologist that none of my vision can ever be restored. I am on six different medications a day to treat migraines, motion sickness, nausea and now seizure medication. As I'm sure you all know, I am sick the majority of my time and I have lost most of my quality of life. I miss out on the simple everyday activities with my children, other family members and friends. It's hard to explain to someone that you are sick, when you show no physical signs of illness. I was declared disabled in August of this year, which for a 26 year old, seems like a death sentence in itself. I went from being a happy-go-lucky mother and lover of life, to a depressed, miserable mess. I recently got the news that I will be receiving help from the Lion's Club with my surgery. I have researched as much as possible about the different surgical options and have a pretty good idea of which type of shunt placement I will be undergoing. I am scared, to say that I am fine with all of this would be a complete dishonest understatement of my feelings. I want some answers, answers that the doctors themselves can't give me because they haven't been on the other side of the knife. I desperately need to talk to someone that is enduring all that I am going through with this disease. What happens before surgery? How long does the shunt placement take? How did you feel directly after the surgery? Were you intubated after surgery? If so, for how long? What is recovery like? How do you feel since shunt placement about your quality of life? Does it ever get any better? What are your limitations? The do's and don'ts afterwards? And finally the big question, does it help with fluid control and pain treatment, or has it made it worse? Someone please take 10 minutes of your time and help ease my mind about all of this. I want to know and understand the reality of all of this before it happens to me. Someone upfront and blountly honest. You're not going to scare me out of this surgery, but it would be nice to know what's going on. Please help!
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PostSubject: Re: AD diagnosed 2009   Thu Dec 22, 2011 6:23 pm

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.Very Happy

Last edited by Heidi on Fri Dec 23, 2011 10:26 pm; edited 2 times in total
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PostSubject: Re: AD diagnosed 2009   Thu Dec 22, 2011 6:42 pm

Bless your heart..of course you'll find support here! hug

First, let me just say it does get better..try to take a deep breath and focus on one day at a time. I know it's difficult and we all have our moments, but looking at the big picture is VERY overwhelming and can beat you down. IHRF (ihrfoundation.org) and associates are working diligently to find a cause and cure, so there are constant upgrades and advancements. Finding the right shunt and treatment regimen can be frustrating and take a long time, but I think the majority of people find at least some relief.

Unfortunately, every surgery and treatment is different for everyone. I had LP shunt placed in 2002. I was on the trauma ward for five days because I started having seizures every time I got up, but they gave me caffeine drips and everything calmed down. I had stopped working in 2000 and had other health conditions that complicated recovery, but have maintained full time employment since 2005. I have had to have a couple of revisions, but they were so much easier on me than the original surgery. I'm even struggling w/ low pressure headaches from my shunt overdraining now, but it's SOOOOO much better than before the shunt. I know there are people that have had horrible experiences w/ different shunts, but there are also people that have been in/out of the hospital in a day. It really all depends on your general health status, type of surgery, and complications. You can probably find specific information regarding procedures on IHRF site.

I hope that helped ease your mind a little..good luck and keep us posted!!!!
Take care,
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PostSubject: Re: AD diagnosed 2009   Fri Dec 23, 2011 8:46 pm

Hi. I would like to welcome you to the forum.. Have a good look around the site. I think you will find many of your questions have been asked by others. It is so very common to feel overwhelmed by the whole idea of IIH, let alone the possible surgeries and what that may bring.
I had a lp shunt installed on Nov 1st. Having been done at DUKE, I suspect I was very fortunate to have one of the best of the best situations. So far, so good. No complications. I decided on the lp shunt because it is less invasive. My Neurosurgeon agreed. Much of the decision making is done by the NS, after all, he does know best as this is something he is an expert at doing. My NS put in a Codman Hakim programmable valve with anti-siphon guard. He feels it is set at my "sweet spot," and is confident that as my system continues to get used to it, my symptoms will all be resolved.
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