I am requesting your help in treatment of a probable CFS leak, yet to be located. An article Cerebrospinal Fluid (CSF) Leaks modified: August 22, 2010 (Timothy C. Hain) fits me to a T (google CSF Leaks). I have written Dr. Hain, but I have not had a response yet.
In 2003, I had a colloid cyst in the 3rd ventricle, which was causing hydrocephalus. It was removed in 2003 and 2 months later I was shunted for hydrocephalus. The shunt worked great for about 18 months.
I started driving semi trucks coast to coast. I think the vibration caused the shunt to siphon and I ended up with slit ventricles. My neurosurgeon put in a programmable Medtronic Strata Valve. After a few adjustments it was set at 1.5. I felt great for a few months and then I started to feel like it was over draining. After numerous adjustments always going back to 1.5 it would last for a few days then I would get another adjustment, going from 1 to 2 back to 1.5.
Then in June 2006 the shunt got clogged and the hydrocephalus came back. They did a full revision, but kept the same programmable valve in. After the surgery it felt like it was over draining so we did adjustment after adjustment, always going back to 1.5. I would be fine for a few days then you will go back, like over draining. I probably had over 20 adjustments or more.
Then in August, 2006 after an adjustment I got sicker than ever. With extreme nausea, extreme headaches, vomiting, orthostatic hypotension, blurred vision, facial numbness, tinnitus, a very stiff neck. Inside the top of my head felt raw and the back of my head and neck would be painful. I fainted a few times getting out of bed. I went to the ER and they did a CT and checked my pressure (which was normal), kept me overnight and made another adjustment. Strange thing, I started to notice a sound coming from my cervical spine between my ears. It had to be really quiet for me to hear it. It felt like liquid was escaping from that area. It was like every 20 minutes or so before I would hear it or feel it (Intermittently). It only lasted a few seconds at a time. I would and still do hurt in that spot. My neurosurgeon thought I was nuts for hearing the sounds in my cervical neck.
I would lie in bed with my laptop with a wireless keyboard so I could lay flat and study what was going on with me. I read that taking a lot of caffeine and bed rest would and could close a csf leak. So, I drank large amounts of caffeine and slowly I started to feel better, then great, valve set at 1.5 (The shunt was still in me).
September 1, 2006, I went back to work driving a Semi until October 27th when the valve started to overdrain again. After a few more adjustments my neurosurgeon tapped the valve on Dec 4th, 2006 and found out that it was indeed siphoning. We decided to put in a fix shunt in the January. We did an adjustment on December 4, and it felt great for a couple of weeks and then started to feel like it was over draining again.
On January 8, 2007, I had a revision of the VP shunt with a replacement with a Delta anti-siphon valve with 1.5 setting. I went home sick like I did before with extreme nausea, extreme headaches, vomiting, orthostatic hypotension, blurred vision, facial numbness, and tinnitus. I knew this was a csf leak.
So in March 2007, my neurosurgeon tied off the shunt. Nothing had changed, I was still sick as a dog. The only time I got out of bed was to go swimming, which now believe was a mistake.
July 11, 2007, they took out the shunt to monitor my pressure, thinking that the catheter was leaking. During the test my neurologist noticed that the pressure was low. I asked him what position I should be in. He told me to make myself as comfortable as possible, and that was lying flat as possible.
One of the neurosurgeons, who came in the next morning and said it looks like I have a CSF leak. I continued to lay flat throughout the day and the following night, never changing positions. My neurosurgeon came in the 2nd day and he said it doesnt look like I have a CSF leak. They took out the catheter. When I got home I was still very sick. I looked up the test that they performed in the hospital for monitoring the pressure, and it stated that I needed to be in a different positions. The Dr. may have been unfamiliar with performing this specific test.
Should I have the shunt re-inserted? In the article by Timothy C. Hain states, CSF leaks might be unintentional consequences of an over him and will will now only will a will or draining csf shunt. leaks can also result from high-pressure hydrocephalus. In this situation, leaks may recur until the cerebral ventricles are shunted.
Back in 2006 after a full revision I knew I had a CSF leak. After taking caffeine and lying in bed for a while with the shunt in I became well again.
I had 4 blood patches after the shunt was taken out. The first blood patch worked great for a day and a half and the others seemed to help a little, just for short periods.
Ive been through every test possible to find a CSF leak, MRIs of the cervical, thoracic spine, and head. CT myelograms of the thoracic, cervical spine, and cisternogram.
Back in 2007, review of the audiogram reveals bilateral high-frequency sensorineural hearing loss, left slightly worse than the right. Speech discrimination is 96% on the right 60% on the left. I am scheduled January 30, 2011 or for another hearing test.
It constantly feels like it's over draining. I have had terrible headaches after being up for a while. I spend most of my days laying down and I constantly have nausea. Occasionally, blurred vision and orthostatic hypotension.
What can be done to help me at this time? This has been going on for 4 years. I went out to Cedars-Sinai and they did the exact same tests. The doctor never sat down me, so I am unclear of the findings. I know there's a possibility that the leak may never be found. I feel the best possible solution is for me to be shunted again.
Please help me. I am 50 years old and was a very active physically fit man before all this began. I dont have any quality of life and am willing to try anything to get well or better (not lying in bed 70% of the time or having headaches all the time). I go to bed at 6:30 every night and sleep until 9 o'clock morning. I feel good in the mornings for about an hour before the headaches start. Then I spend most my day laying down.