Like the young lady who introduced herself today mell33 I am also grateful to have found this support group. I only introduced myself earlier this week. I've never been in a support group of any kind nor have I ever blogged. I typically stay away from social networking. I think that Facebook is to open and dangerous. The concept of Twitter of "following" someone also doesn't appeal to me as I don't want strangers "following" me. The only social networking site that I have joined is LinkedIn only to aid with career mobility. Although I was diagnosed in 2002 or 2003 and I had the IHRF website bookmarked I never actively looked for support or advice nor took advantage of resource materials about IH. I have read over the past few days that there are many other groups such as this on Facebook but I will not join Facebook for the reasons mentioned above.

After reading many posts on this site and on a couple of others just talking about it is liberating. Finally I feel validated. I am also grateful for some of the resources that have been offered on this site and others. I now realize that I didn't ask my neurosurgeon all of the questions that I should have. Over the past several years it seems that I have had one malady after another. I've been injured multiple times and had numerous surgeries. But now after exhausting serial LPs and countless pain meds my neurologist believes that I will benefit by shunt surgery. I've never been fearful of surgery in the past but I can't even make a decision of either having the surgery (VP) or continuing to exist without really living and in constant pain. I always describe my pain as feeling like there’s a little guy behind my right eye twisting it.

Reading about others this week makes me feel good just knowing that I'm not alone but at the same time might also deepen my depression hearing about mixed results with shunts and multiple revisions. I've been doing a lot of thinking wondering if others share some of the same physical problems that I'm about to describe and if anyone has knowledge of any of these signs being a precursor to IH.

For years now the area under my right eye is swollen and darkened. My neurologist didn’t seem to think that it is related to the IH. I experience sudden involuntary muscle contractions like a twitch while resting. They usually occur in my quads and in my upper arms. Over the past couple of years I have been having many tremors in my hands. My hands shake a lot now and I often find it difficult doing things like getting the food from my plate into my mouth using a fork without it falling. I used to be able to use chopsticks with ease but now usually have to use flatware as my dexterity has become poor. I have been losing my balance more and more over time. My wife attributes some of these symptoms to all of the meds that I take but I think otherwise. My short time memory has worsened dramatically the past year or so. My father has been diagnosed with Frontal Lobe Dementia and my paternal grandmother died after suffering from Alzheimer’s disease for many years. I have been reading lately that memory problems are common with IH. I was beginning to think that I was going down the same path as my father and grandmother. My wife also feels that it’s attributed to all of the meds. Either last year or the year before I had a large and very painful kidney stone that I was unable to pass and had to have emergency surgery to remove it. I asked the urologist if it may have been caused by all of the Diamox that I take daily (1000mg in AM, 750mg in the afternoon and again at night). He didn't believe there was a cause and effect.

If anyone can provide any answers I would be eternally grateful.


Have a happy and HEALTHY New Year


Your new friend Mark

Hi Mark
Many thanks for refering to me as the young lady
I hope you find your answers.
Mel

Mark, it is difficult to say if your other symptoms may be IIH related or not. I can tell you that my main symptom is/was balance issues. I was told that it seems that the increased fluid pressure causes the cranial nerves to become compressed. When in this position, symptoms appear. Remove the elevated pressure and the nerves are able to move away from each other and the symptoms are resolved. Balance is controlled in part by cranial nerve VIII.

I spoke with a Doctor who is more of a friend than a clinician. He said that the 51% failure rate is actually good odds.for success. A great deal of it is in the approach by the surgery team. I was given betadine to wash with on the night before surgery, told to change into clean pj's and clean sheets, then shower again in the morning again using the betadine and put on clean clothes. That type of prep helps reduce the chance of infection. My Neurosurgeon has a very low failure rate. He uses the same brand tubing and programmable valve each time because he has found it to be the least problematic. That is what you will need to ask your surgeon. I think it is only natural to be hesitant of a procedure that cannot guarantee success. But what I can tell you, is that when the shunt surgery does go well, it is wonderful! The symptoms disappear!

Hi Mark, and welcome to the group!

I'm glad you found us and are finding the posts helpful. I would just mention that usually the people you find on these sites are people like you that are looking for answers. I would venture to guess that people who have had successful treatments, don't seek out these support networks..I'm not sure if that helps w/ your surgery decision, but thought I would mention it. Surgeries are also daunting and you really just have to weigh the pro's and con's yourself. Are you satisfied w/ your current quality of life or is it worth taking a chance to possibly improve your condition? Definitely a tough question, but also very personal one.

I have had issues w/ memory and coordination, but I think I would look into medication side effects or other causes for some of your symptoms. Some of these medications are 101 ways to kill you in a bottle and you have to be careful when taking more than one. I hope that helps!

Take care, and keep us posted!
Julie

Hi Mark and a very warm welcome to the group, I am so glad you found us. I completely understand where you are coming from, and /i have to admit I don't do Facebook and our Group on there is run by two of our other Administrators, but I do have Twitter to give out information from our group etc.

Balance is one of the symptoms with IIH and Diamox can cause Ataxia which can affect balance, coordination, and speech. It might also be an idea to look at the side effects of your other medication, and discuss them with your Doctor.

I know the thought of having a shunt is very daunting, and that the first step into the unknown for anyone who has never had one, makes you feel anxious and scared. I myself have had several shunts, and although there are some risks with having one, there are also benefits too, just as with any kind of invasive surgery.

A shunt can make life a lot easier, especially as it controls your CSF constantly so there is no risk to your vision and the headaches caused by high pressure stop. Which means your symptoms then lessen or go away. It is a big step to take as a shunt is a permanent thing, so your trepidation about having one is to be understood.

As Julie mentioned the successful ones of us, don't always come back to let us know how they are getting on because they then just get on with their lives again, but there are some of us, such as myself who do. I have been shunted since 2001 and it has allowed me to get back to daily living with none of the problems I previously had with high pressure, which is why I began this group to help others with my 23 years of experience with IIH.

We have lots of members who are shunted and will be happy to share their experience with you, and we also have lots of information and helpful booklets. Yes, there are some downfalls with infection and shunt malfunction, and we do highlight the things to look out for with having a shunt. As with any kind of implant, or medical device there are highs and lows, but they are often within a minority than a majority. We do our best to keep you as informed as possible and we are all willing and ready to answer all your questions etc, so please dont be afraid to ask.

If you ever want a one to one in our chatbox with any of us just PM us and we can arrange a time, so you can talk to us in real time.

Hope this helps.

Heidi