Hello my name is Ryan, I'm 32 years old (as of yesterday) and have had a shunt to deal with hydrocephalus since I was 1 year old. I've the shunt itself revised twice. Once when I was 8, then again when I was 9. I have had the tube replaced once, about 9 years ago.

I am an active grappler (and yes, I know full well the dangers) and have sort of always known that this could happen. Today I was doing Brazilian Jiu Jitsu with some friends, about an hour and a half in I wound up in a strange position where my neck got cranked one way I heard multiple pops, tapped out, and when I looked in a mirror the 'bulge' of my shunt tube (that has been pretty taut for a couple of years) was gone. I have a bit of pain when I turn my head to the right, but I think that that's only bruising against the muscle that the tube sat against. Other than that no problems.

Well there's one problem, I won't have medical insurance for 5 weeks.

The last time this happened (9 years ago) I honestly couldn't tell you the cause. I just randomly wound up with a fluid lump in my lower neck that stuck around for a couple of weeks until I flew back to Portland (home town, I was still under my mother's insurance at the time) and had an xray. I flew back and went back to work (lump still there), they called me a couple of days later and said the tube was broken, about a week after that I had a new tube put in.

I know the first thing I'll be told here is to go have it looked at immediately, but I will not do that unless I start showing symptoms of malfunction. I really don't know anything about hydrocephalus, my shunt, or anything for that matter.Wink

I also suffer from General Anxiety Disorder.

I grapple to cope with my anxiety.

I've probably grappled for the last time.

In a nutshell I signed up here to talk to people about what it is I have, what I should do while I wait for my insurance to kick in, and how to cope with losing my one release (Brazilian Jiu Jitsu). I'm really worried. One, because if this gets bad, I'm going to wind up costing my family a ton of money. Two, I don't know what to do without BJJ.

Any advice would be appreciated. Sorry for the long read. I'm pretty worried and needed to get it off my chest.

Hello. I understand that you have shunt concerns, and have anxiety. Maybe I am wrong, but if you go into the ER, have it taken care of and fixed, the anxiety over it would go away. 5 weeks is a long time to have something that is not functioning right in your body. I would even with NO insurance. There are hospital advocates in almost every large hospital, that may be able to find a way to negate your bill. They did for me, when I needed a surgery, and could not afford it. Also the State Rehab agency maybe able to help you. Sometimes they pay for the treatment, as long as you can go back to work.
Research can bring anxiety, or it can calm you so you understand more, your own condition. I choose to know, by research. My anxiety drops when I understand more. I will keep you in my thoughts and prayers. ginnie

Thanks for the reply ginny. I really feel okay with just trying to wait it out and listening to my body. For the moment anyways. If anything changes I'll re-evaluate. I went to my moms house (as she knows more about this than me) and this is what we came up with:

1. Find my shunt info card.

2. Call OHSU medical records, see who has my shunt records, have my records faxed to my GP, and find out who the local neurosurgeons are and how to contact them. (depending on how far out scheduling is, make an appointment for after insurance kicks in)

3. Contact my GP, make sure he has everything he needs in his hands, and ask for advice.

-5 weeks from now-

Schedule appointment with neurosurgeon if I haven't already.

Obviously I'll be doing all of this while listening to my body and feeling for symptoms.

Hey XSideTop,
I have recently had a fractured shunt tube and revision. I have no idea when the fracture occurred, it wasn't until I started vomiting that my wife hit the panic button. When the ambulance came I felt my neck where the tube was and there was no tube present. The hospital wanted to do 'tests' prior to any surgery, these tests were to occur the following day but that night things went down hill majorly and it was decided not to do any further test and I was rushed in for surgery that morning. That was in February.
Things did not go to plan as the replacement shunt valve failed to maintain the required pressures and I went from too much CSF in the ventricles to not enough causing slit ventricle syndrome. The valve was replaced again in September and ever since I have been in debilitating pain from the headaches. The NS have told me 'All fixed' but unfortunately this has not been the case for me. I have now been told my options are a diet of pain meds or put up with it.

Here in Australia we are lucky to have a public health system that works called Medicare, my understanding is that President Obama wants to bring in a similar program for all Americans to have equal access to medical services. The beauty about Medicare here is that prices on services and (some) drugs are capped and although some specialists charge a fee on top of the Medicare rebate it is usually less than $100, although some specialists do charge more. The public hospitals are all funded via Medicare. You can choose a private hospital, in which case insurance is required but everybody has access to the same level of care whether insured or not. Admittedly the drug companies don't like it as its the Govt that set the prices on drugs so these multinational companies cannot charge exorbitant rates for medications, which for people on minimal incomes can be a saviour.

Best of luck with it all and I hope you have more success than I have.
Please keep us informed on how things go for you.

Merl1n