Devon:
Just catching up on all this. Sounds like a rocky road, but the improvements you are talking about are encouraging. I keep in touch with our mutual friend, J. Hair, so I’ll pass along some of this. I’m not on this forum enough lately.
I know all of us in the Club are thinking about you,
All The Best,
Dennis Thompson, Odessa/Ritzville
Devon Sinsley said:
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
Devon,
Because your doctor feels that the source of the fluid is in the spinal area and not in the brain cavity, that should be a fairly routine surgery for you. The shunts are so small now and fully computerized (not like the old days when they were “mechanical”). I have had my shunt now for over 6-1/2 years and still working as “advertised”. Most of these shunts are good for about ten years max and then have to be replaced. We’ll see what happens in the next few years. Ill be approaching 80 by then and will have to decide if the surgery is a safe option then.
Devon,
Some encouraging news at last. I hope this leads to some permanent relief for you buddy. (http://largescalecentral.com/externals/tinymce/plugins/emoticons/img/smiley-innocent.gif)
Dennis Thompson said:
Devon:
Just catching up on all this. Sounds like a rocky road, but the improvements you are talking about are encouraging. I keep in touch with our mutual friend, J. Hair, so I’ll pass along some of this. I’m not on this forum enough lately.
I know all of us in the Club are thinking about you,
All The Best,
Dennis Thompson, Odessa/Ritzville
I need to call John. We usually talk weekly. I need to update him. He will be happy to hear I am feeling better.
Devon, glad it’s working out. Prayers.
Does this mean that you will finally finished your railroad? (http://www.largescalecentral.com/externals/tinymce/plugins/emoticons/img/smiley-innocent.gif)(http://www.largescalecentral.com/externals/tinymce/plugins/emoticons/img/smiley-laughing.gif)(http://www.largescalecentral.com/externals/tinymce/plugins/emoticons/img/smiley-tongue-out.gif)
Gary Armitstead said:
Devon,
Because your doctor feels that the source of the fluid is in the spinal area and not in the brain cavity, that should be a fairly routine surgery for you. The shunts are so small now and fully computerized (not like the old days when they were “mechanical”). I have had my shunt now for over 6-1/2 years and still working as “advertised”. Most of these shunts are good for about ten years max and then have to be replaced. We’ll see what happens in the next few years. Ill be approaching 80 by then and will have to decide if the surgery is a safe option then.
The spin and skull are connected with regard to the fluid. The excess fluid is everywhere. The pressure is felt in the skull. I feel nothing in my spine really, maybe a bit of a stiff neck. When they did the high volume lumbar puncture the drained the 15cc from my lower spine but that all drains down from the skull where it is produced. It reduces the pressure in my spine and skull. At least that is how it is explained to me. What I know is when they drained the fluid from my lower back my headache went away. So no matter how it works, I approve.
I’m glad you’re getting some relief!
Good news Devon. Glad to hear you are finally starting to get some relief.
Chris
Steve Featherkile said:
Devon, glad it’s working out. Prayers.
Does this mean that you will finally finished your railroad? (http://www.largescalecentral.com/externals/tinymce/plugins/emoticons/img/smiley-innocent.gif)(http://www.largescalecentral.com/externals/tinymce/plugins/emoticons/img/smiley-laughing.gif)(http://www.largescalecentral.com/externals/tinymce/plugins/emoticons/img/smiley-tongue-out.gif)
I sure hope so Steve. If I feel like I do today I will be able too. My wife told me I need to get my butt outside and play with my trains.(http://largescalecentral.com/externals/tinymce/plugins/emoticons/img/smiley-cool.gif)
Devon Sinsley said:
Gary Armitstead said:
Devon,
Because your doctor feels that the source of the fluid is in the spinal area and not in the brain cavity, that should be a fairly routine surgery for you. The shunts are so small now and fully computerized (not like the old days when they were “mechanical”). I have had my shunt now for over 6-1/2 years and still working as “advertised”. Most of these shunts are good for about ten years max and then have to be replaced. We’ll see what happens in the next few years. Ill be approaching 80 by then and will have to decide if the surgery is a safe option then.
The spin and skull are connected with regard to the fluid. The excess fluid is everywhere. The pressure is felt in the skull. I feel nothing in my spine really, maybe a bit of a stiff neck. When they did the high volume lumbar puncture the drained the 15cc from my lower spine but that all drains down from the skull where it is produced. It reduces the pressure in my spine and skull. At least that is how it is explained to me. What I know is when they drained the fluid from my lower back my headache went away. So no matter how it works, I approve.
I know about the fluid from the brain that is tapped from the lower spine area. They already knew the location in my brain where the fluid accumulation was occurring because of previous scans. They just didn’t want to do high risk brain surgery until they could verify that the spinal tap would correct my balance and headache problems. The entire brain surgery took five hours. 15cc removed is considered a very small amount, I had 10cc removed every hour for 4 days! But I had 1000% improvement with the first 10cc removal. But because my brain was still producing an abnormal amount of fluid constantly, they had to keep draining over the 4-day period. It is easier to insert the shunt in your spin specializing in the spineal area and they probably don’t want to do a much more riskier brain surgery in your case. They may want to do the shunt because it is safer for you. Removing fluid from the spine is very risky in its own right! Too much and you can pass out or have a minor stroke or even die. It’s not to be taken lightly in any case. My temporary spinal tap for the 4-day test was performed by two vascular surgeons specializing in the spine. It was done under local anesthetia. They were talking to me during the entire procedure and I had to remain motionless the entire 30 minutes, That was the worst of the procedure for me.
Getting back to the layout is great news! Keep up moving ahead!
Is it done, yet? (http://www.largescalecentral.com/externals/tinymce/plugins/emoticons/img/smiley-tongue-out.gif)
Devon, take your time. slow recovery is generally more profound.
(took me years to get really on track again, after my last heart attack)
Good to hear you received some relief (http://www.largescalecentral.com/externals/tinymce/plugins/emoticons/img/smiley-smile.gif)
Glad to hear you are better!
Gary Armitstead said:
15cc removed is considered a very small amount, I had 10cc removed every hour for 4 days! But I had 1000% improvement with the first 10cc removal. But because my brain was still producing an abnormal amount of fluid constantly, they had to keep draining over the 4-day period.
This may be the difference right there. It sounds to me like its not that I produce it too fast its that I don’t reabsorb it fast enough. And I also have a mild case of it. So hopefully worst case is that i have to have 15 drained every four to six months.
Devon Sinsley said:
Gary Armitstead said:
15cc removed is considered a very small amount, I had 10cc removed every hour for 4 days! But I had 1000% improvement with the first 10cc removal. But because my brain was still producing an abnormal amount of fluid constantly, they had to keep draining over the 4-day period.
This may be the difference right there. It sounds to me like its not that I produce it too fast its that I don’t reabsorb it fast enough. And I also have a mild case of it. So hopefully worst case is that i have to have 15 drained every four to six months.
Have you seen/felt the difference since the draining ?
Devon Sinsley said: My wife told me I need to get my butt outside and play with my trains.(http://largescalecentral.com/externals/tinymce/plugins/emoticons/img/smiley-cool.gif)
And that’s your cue to say “Yes, dear.” (http://largescalecentral.com/externals/tinymce/plugins/emoticons/img/smiley-smile.gif)
Gary Armitstead said: … and I had to remain motionless the entire 30 minutes, …
That sounds like it’s easy, ain’t no big thing, but the reality of it ain’t that simple.
I’ve not had cause to need a spinal tap and hopefully never will.
Other cause of similar requirement once does allow me to relate to that part by a percentage, though.
Devon Sinsley said:
Gary Armitstead said:
15cc removed is considered a very small amount, I had 10cc removed every hour for 4 days! But I had 1000% improvement with the first 10cc removal. But because my brain was still producing an abnormal amount of fluid constantly, they had to keep draining over the 4-day period.
This may be the difference right there. It sounds to me like its not that I produce it too fast its that I don’t reabsorb it fast enough. And I also have a mild case of it. So hopefully worst case is that i have to have 15 drained every four to six months.
Devon,
Just a little explanation of my lumbar drain procedure. As I mentioned before, I had the drain in place in my lower spine during the entire 4-day test. I could walk around the hospital halls, climb stairs as much as I wanted and even go outside and walk around the hospital at UCLA. No restrictions what so ever. I did have at least three spigot valves in the line to prevent a sudden drain of the fluid in case of a tube break or a malfunctioning valve. Quite a few failsafes. IF a line did break and there was a sudden loss of fluid, I would have been dead in only a few seconds. I did have to push the pole with wheels around with the lumbar fluid catch bottle and line, but that I got used to right away. I didn’t feel like the “lone Ranger” because there were a dozen or more patients having the same procedure. It was a kind of “badge of honor”.
