When dealing with hydrocephalus, the neurosurgeon has to understand how each valve works and to place the proper valve in the head of the patient. There are three; what I would call *major players*, in the field of hydrocephalus, yes, there are others, yet their failure rate concerns me; so I will avoid "promoting" them.
We've already written about the "fixed" (monopressure) and the "programmable" type valves. The "major players in the US are JNJ, which manufactures the Codman-Haikman Programmable Valve. There is also Medtronics, which manufactures both programmable and fixed valves. Sophysa also manufactures both "fixed" (monopressure) valves, as well as, a unique MRI-safe valve. Both the Codman and Medtronics "Strata" valves may need to be "reset" to the setting the physician desires for the patient. Medtronics "Delta" valve is a "fixed" (monopressure) valve. Sophysa is a European (France) based company, but they have an offices in the US.
Here's the point I want to stress: Each of us are individual. Therefore, the neurosurgeon needs to make sure that the valve they place in the patient is going to work for the patient. Here is where the "Three Bears" come in. If the valve placed has too little CSF (cerebrospinal fluid) drained, the patient is not going to get any relief. If too much is drained, that also causes extreme pain, not to mention lethargy and lack of an appetite, in some patients. Over-draining can also lead to the condition called Slit Ventricle Syndrome or (SVS). A condition I deal with. Yet, if the draining is *JUST RIGHT*, well, we have a happy patient that can function. Yay!!!
I had one neurosurgeon that thought I knew *nothing* about my condition, nor the valve that was in my head. Boy was he wrong. I know I don't know *everything*, that would be arrogant. Yet, I *know* what works, for *me*. That is the most important thing, in my view. Remember, in my previous blog, I said I had one operation at around a month after birth and then the next one at 16. Well, at age 28, I had a different neurosurgeon in a different town that thought he was the re-incarnation of God. Pffft!!! I was in the hospital just shortly after Christmas, '87. It was an emergency operation. I was first on the table the following morning (I had arrived right after midnite), and was in fairly stable condition. I spoke to the neurosurgeon about my valve and he said: "I'll put in what is best for you. I know what I'm doing". He apparently didn't have much experience in hydrocephalus of someone with the background I did. I asked for a valve with *NO* anti-siphon device, because I knew it would cause me problems. He didn't listen and two weeks later, he had to revise the valve. Yep, the next one had no "anti-siphon" device in it.
When I was around 30, I met my next neurosurgeon. We get along great. He listens to me and has been my *main* neurosurgeon for the last 21 yrs. He entrusted me with the training of his residents. Some of his residents have been very good, while others needed some extra training. Whether it is your child or you that has hydrocephalus, the one that has hydrocephalus needs to feel they are listened to. If they are *not* listened to, trust is sometimes difficult. That can also carry over into adulthood.
Whether you are the patient, or the advocate for the patient (mom, dad, aunt/uncle, grandparent, step or foster parent), knowledge is power. The more you know about your own (or your child's) condition, the better.
In my previous post, I asked the question "How is it going to affect me". That all depends on how far removed you are from hydrocephalus. If you are the individual *dealing* with the condition, you may already know that hydrocephalus is caused by a structural problem in the brain, where the CSF fluid does not drain properly. It accumulates in the "ventricles" or spaces in the brain. We have four ventricles. If there is damage to any one of the ventricles, fluid can build up. That can lead to headaches, nausea, dizziness, lethargy, loss of appetite, vomiting, sometimes loss of bowel or bladder control, in rare cases the individual can go blind... temporarily.
What can be "done" for it??? Currently surgery is the only way to treat someone with hydrocephalus. If it is a child under the age of 21, they can be seen by a pediatric neurosurgeon, who specializes in hydrocephalus. Personally, I recommend that the patient go to a hospital that is connected to a university medical school. They are trained in the latest techniques. But, I recommend you do your research on who you go see. You need to be confident in the neurosurgeon who is going to be digging around in your head. If however, you are an adult with hydrocephalus, going to a "pediatric neurosurgeon" may sound a bit strange, yet, if you have seen that neurosurgeon since birth, they may have colleagues that they may recommend. Again, do your research.
One thing to be aware of is that people with hydrocephalus, or any other brain-related health issue; that individual can be susceptible to other brain-related health issues, namely: epilepsy, depression, anxiety disorders, etc. It is recommended that there be a strong "support network" available. That network can include friends, family, co-workers, schoolmates, other individuals with similar health issues, etc.
