Hey there! Dang, man, you are having quite a ride. Glad you popped in to say hey.
Mike Wlez said:
Hang in there Devon, we’re all pulling for ya
Ditto that!
Thinking of you Buddy… (http://largescalecentral.com/externals/tinymce/plugins/emoticons/img/smiley-laughing.gif)
As one who has struggled with undiagnosed and unresolved medical issues in the past, I know a bit about what you are going through. Hang in there!
As one who has struggled with undiagnosed and unresolved medical issues in the past, I know a bit about what you are going through. Hang in there!
Best wishes, D, from over here. We’ve been living with raised intercranial pressure for over 37 years. Our daughter, Eleanor, has hydrocephalus, and has a shunt in her poor old head, revised about ten times over the years.
Sure hope it doesn’t come to that for you, buddy, and hope that the meds do their stuff.
Bestest
tac & famb
Hi Devon! And my parents are in town to visit and say hi, too - I took the liberty of figuring you wouldn’t object to their prayers.
And my little 50 person farm burg church knows there’s a model train friend out there in Idaho who desires healing.
Going in tomorrow for a large volume lumbar puncture (spinal tap). They are going to remove 15cc of spinal fluid to see if that will reduce the pressure in my head. This is a pretty routine treatment for my condition. If all goes well it should give me a few months relief of my symptoms. It is not a cure but its the most likely effective treatment at this point. We will probably then try a new medication that will keep me from producing to much again. But thats down the road. For now I just want so symptom relief.
RevDev,
Best of luck with this procedure. I hope it gives you some relief. I’ll be thinking of you.
Good luck Devon , we will pray for you here. Hurry up and get well my friend !
Good luck with the procedure… Hope it works…
Praying for the procedure to be successful… (http://www.largescalecentral.com/externals/tinymce/plugins/emoticons/img/smiley-laughing.gif)
I hope this goes well!
Oh man, I sure hope you get relief and then recovery.
Yer bud,
John
Good luck and God bless!
Devon Sinsley said:
Going in tomorrow for a large volume lumbar puncture (spinal tap). They are going to remove 15cc of spinal fluid to see if that will reduce the pressure in my head. This is a pretty routine treatment for my condition. If all goes well it should give me a few months relief of my symptoms. It is not a cure but its the most likely effective treatment at this point. We will probably then try a new medication that will keep me from producing to much again. But thats down the road. For now I just want so symptom relief.
Devon,
I have avoided comment on your problem because everyone can be treated differently. Also I wasn’t going to “diagnose” (I’m not a doctor :)) what I felt the problem was. But after seeing your post tonight, I went through the exact procedure in late 2010 and early 2011. In my case, I was having increasing problems with my balance and then as it became more severe, I had difficulty walking and climbing stairs. On top of these symptoms, I was having more and more frequent headaches. First I saw a neurologist. Then I had a brain scan. The problem was found immediately. Was a build-up of fluid around one section of my brain. After some additional tests, I was referred to a neuro-surgeon at UCLA/Ronald Reagan Hospital. More tests and additional scans. In January 2011, I was admitted to RR Hospital for a 4-day test consisting of a “tap” inserted into my lower spine. Also in the tap was a valve where technicians could control the amount of fluid removed. I had this tap in my spine for four days! My surgeon set up the amount of fluid drained to 10cc every hour for the entire four days. Within the first TWO hours (20cc removed), my headache disappeared and my balance returned. I could walk up and down stairs without using hand rails and could balance on one foot. I could bend over and touch my toes and not lose my balance. I was 67 years old at that time and had the same balance as a twenty year old! They continued the draining procedure for the next four days and noted any increase or decrease in my balance. Also noted any dizzyness or headaches. They even checked for any memory problems or cognition during the procedure.
At the end of the four days, the tap was removed and I was sent home to see how long it took for my balance problem to return. This was all part of the test. My balance symptoms returned with about a week and a half. We knew this would happen because the drainage procedure was only a temporary fix. Because the surgeon was satisfied with the results of the procedure and I was a good healthy candidate for the brain surgery, I was admitted to Ronald Reagan to have brain surgery to insert a small catheter into my brain on the right front just above my temple. A tube came out from the catheter, through a one inch diameter hole cut in my skull and then run along my skull just under my scalp. A computer assisted valve was planted in the tube and then down over my right ear and threaded down my neck and into my chest cavity fairly close to my stomach (not IN the stomach, but near it in the lower chest cavity). The Valve then drains the fluid automatically according to the computer which senses whether I’m standing vertical or lying down OR bending over. I’m 74 now and everything is still working as stated. No headaches, perfect balance and walking every day like I was 20 years old. The only thing that has changed is that I cannot half an MRI at all because of the stainless steel round plate that covers the hole in my skull. I also have to make sure I don’t take any hits to my head on the right side that would damage the valve and computer. It took about six months to “tweak” the computer to remove the exact mount of drainage to be removed each day. That was done by the surgeon with a device that looked like a computer mouse. He would hold the “mouse” against my skull in the vicinity of the computer and changed the amount the computer valve would drain. It was sometimes be increased or decreased until we had the optimum setting to achieve the maximum stability and still not have headaches. It can be a fairly narrow band. If the valve drains too much, there is always a chance for a stroke and death. You need the best neuro-surgeon you can get for these procedures.
This may not be what your doctor has in mind for you, but it very closely resembles what I went through.
Good luck with your procedure. It sounds like you have a build up of fluid and you need to know that you have to be very patient as the results sometimes come very slowly and it can be frustrating. Sounds like your guy has his finger on the problem.
II am not sure whether I have made a comment in this thread Devon, however, every time I look at LSC ( a couple of times a day at least) I see this thread and my thoughts and prayers are for you. You seem to be getting some good treatment, hopefully you will soon be free of some of the unpleasant effects,
Thanks all. So far so good. I am not symptom free but I am way better than I was. The pressure in my ear is gone the headaches a minor and not constant. I still have vision issues but that was to be expected. That has to actually heal. But the results have been positive.
Gary. One of the possible procedures for a permanent solution is very similar to what you describe except the shunt goes in the spin not the skull but does the same thing.
This too is an experiment more or less. If it last for the 4-6 months we are hoping then we will consider just doing the spinal tap. If it doesn’t last long then likely a shunt. We will also try a new med to see if we can keep the pressure from building back up
Good news, I’m so happy for you.
John