My dear friend, hang in there, please.
We’ve got to get you weller too.
Devon Sinsley said:
Yeah that is what is so frustrating. I had a couple GREAT months. I pretty much rolled through summer feeling really really good. Basically 100%. Then about a month ago I felt it starting to come back. And now I am pretty much back to my worst. The roller coaster ride is hard. I know its treatable. The shunts do work. Just need to get one to last more than a couple months. I don’t understand what the issue is.
Devon,
I’m really sorry to hear this again…
I gave you my suggestions a couple of years ago. The doctor’s name AND the facility to go to for this procedure. There were four patients that had the shunt procedure done the day I had mine. Same surgeon for all four. As of today, ALL four patients have not had one issue with their shunts. I keep in touch with these other patients and we all check on each other. All of them are in their 60’s and seventies.
I had an issue with vertigo last December and my VA doctor was concerned that my shunt was not working correctly. Had a scan done and everything was still operating “as advertised”. Nothing had moved either. My original surgeon at UCLA also read the imagining results and said all was well and looked identical to the scan taken a week after my surgery. There is really no excuse to put up with this with your shunt! Please check with the doctor I referred you to. Your quality of life sucks this way. If you want to discuss this further, send me an email. ([email protected])
Gary Armitstead said:
Devon Sinsley said:
Yeah that is what is so frustrating. I had a couple GREAT months. I pretty much rolled through summer feeling really really good. Basically 100%. Then about a month ago I felt it starting to come back. And now I am pretty much back to my worst. The roller coaster ride is hard. I know its treatable. The shunts do work. Just need to get one to last more than a couple months. I don’t understand what the issue is.
Devon,
I’m really sorry to hear this again…
I gave you my suggestions a couple of years ago. The doctor’s name AND the facility to go to for this procedure. There were four patients that had the shunt procedure done the day I had mine. Same surgeon for all four. As of today, ALL four patients have not had one issue with their shunts. I keep in touch with these other patients and we all check on each other. All of them are in their 60’s and seventies.
I had an issue with vertigo last December and my VA doctor was concerned that my shunt was not working correctly. Had a scan done and everything was still operating “as advertised”. Nothing had moved either. My original surgeon at UCLA also read the imagining results and said all was well and looked identical to the scan taken a week after my surgery. There is really no excuse to put up with this with your shunt! Please check with the doctor I referred you to. Your quality of life sucks this way. If you want to discuss this further, send me an email. ([email protected])
I’ve contacted them and they do not work with my insurance. I can’t even afford the consultation with them much less surgery. I really do not understand this. Swedish Neuroscience Institute is a renowned clinic. I had three surgeons install this last one. For some reason my brain keeps squishing and plugging off the end of the catheter. Both right side ventricles are completely collapsed. These people in Seattle SHOULD be able to get the job done if anyone can. There is just something with this condition that shunts don’t work well in some patients. I have a friend who has had 52 surgeries for this condition. I don’t really understand what the difference between hydrocephalus and Psuedotumor Cerebri and even though the treatment is the same the results are wildly different. I would love nothing more than to go to UCLA but I simply can not afford it. And when they reviewed my records they agreed with all my previous surgeon was doing. My first surgeon did consult with them on my case.
'm sorry that you can’t go with UCLA and Dr. Bergsneider. When I saw him last December for a consultation on my VA brain scan and “read”, he had moved into a whole new building at UCLA devoted to Neurosurgury exclusively! That’s how much of a problem brain issues have become…ALL ages. Just like auto mechanics, surgeons come in all levels of skill. Only a few better than the majority. Some very much worse :(. I’m going on 9 years since my surgery. Like I said before, I had an issue with vertigo and that was caused by a condition called BPPV (Benign Proxysmal Positional Vertigo). Dizziness caused by small calcium particles called otoliths that are displaced into the labyrinth of canals in the inner ear. Dizziness can come suddenly and without warning and disappear just as suddenly. Very debilitating! Changed to a different medicine I was taking at the time and I haven’t been bothered since. Is dizziness your issue with this shunt?
Gary Armitstead said:
Is dizziness your issue with this shunt?
100% sure it is related to the out of balance pressure in my ears. When my shunt works I have zero vertigo issues. Early on vertigo was a minor problem. This go around its a major concern at least to me. Went to help the wife with adding a leaf to the kitchen table and bent over and went crashing to the ground. Fortunately it didn’t hurt anything more than my ego. But it does mean I am a fall risk. When I wake up in the morning and head to the latrine for my morning drain I have to hold onto the wall to keep from falling over. It seems to be a morning issue once I am up for the day and moving around it seems to subside enough that I don’t fall over. It isn’t fun. I wish/pray for a year symptom free.
Gary Armitstead said:
That’s how much of a problem brain issues have become…ALL ages.
Gary,
The Swedish Neuroscience Institute is part of the larger Swedish Hospital network. Within that clinic they have the cerebrovascular clinic which is 100% devoted to the specialty of spinal fluid and blood supply. These guys aren’t just neurosurgeons or even just brain surgeons. 100% of what they do is treat blood supply and spinal fluid issues. My surgeon doesn’t work with brain tumors or other brain issues. His only work is with strokes, aneurysms, and spinal fluid issues like hydrocephalus and PTC. These guys should be able to fix me if anyone can.
Devon Sinsley said:
Gary Armitstead said:
That’s how much of a problem brain issues have become…ALL ages.
Gary,
The Swedish Neuroscience Institute is part of the larger Swedish Hospital network. Within that clinic they have the cerebrovascular clinic which is 100% devoted to the specialty of spinal fluid and blood supply. These guys aren’t just neurosurgeons or even just brain surgeons. 100% of what they do is treat blood supply and spinal fluid issues. My surgeon doesn’t work with brain tumors or other brain issues. His only work is with strokes, aneurysms, and spinal fluid issues like hydrocephalus and PTC. These guys should be able to fix me if anyone can.
So, how does the Swedish Neuroscience Institute compare with the “Corpsman with a Stick to root around with”?
Wishing you all the best…
Bruce Chandler said:
So, how does the Swedish Neuroscience Institute compare with the “Corpsman with a Stick to root around with”?
Wishing you all the best…
Well considering I am at ground zero I am about ready to let doc turn loose with his stick. Either stir it around or crack my noggin open and let the juice flow freely. I am currently in the market for a wood working set of plans for a guillotine.
Oh man, I’m so sorry you’re still having problems with this, Devon. Hang in there, buddy.
An open hole in the head with a bandage over it seems to be the best course of action!! Plus you can weekly or so hit the reboot button !!!
Devon, best of luck with whatever they figure will fix it… (http://www.largescalecentral.com/externals/tinymce/plugins/emoticons/img/smiley-cool.gif)
However, the way most folks are talking, maybe installing a beer tap would work…
Keep closed until the pressure builds, then open and release the pressure…
hehehe Kidding… Seriously, best of luck…
Still willing to help you out buddy!
C’mon Chris…can’t we do better than Budweiser?
How about:
Or if we want some real class, let’s go with the beer that made Milwaukee famous:
Is the beer for me or for you? Not sure how it figures into the procedure. For me I’d prefer something with a bit more of a kick. But if this is for the “hold my beer” moment when you guys perform surgery on me well then pick your poison.
I’m not buying Schlitz, Devon can bring his own beer.
Chris Kieffer said:
I’m not buying Schlitz, Devon can bring his own beer.
I’m a beer snob. None of what has been posted is fit to let the dog drink. If we are buying off the shelf then
But thats only if I must drink beer. I’d really rather people come bearing this gift:
Devon Sinsley said:
Is the beer for me or for you?
All procedures are BYOB…(https://www.largescalecentral.com/externals/tinymce/plugins/emoticons/img/smiley-sealed.gif)
Chris Kieffer said:
Devon Sinsley said:
Is the beer for me or for you?
All procedures are BYOB…(https://www.largescalecentral.com/externals/tinymce/plugins/emoticons/img/smiley-sealed.gif)
What kind of cheap service is this. . .If I wanted marginal service I’d just keep seeing my current doctors. . .Doh, did I say that.
I didn’t hear a thing.
Devon Sinsley said:
Chris Kieffer said:
I’m not buying Schlitz, Devon can bring his own beer.
I’m a beer snob. None of what has been posted is fit to let the dog drink. If we are buying off the shelf then
But thats only if I must drink beer. I’d really rather people come bearing this gift:
Devon you might want to look at this also though the Knob Creek ain’t bad.
(https://www.largescalecentral.com/externals/tinymce/plugins/emoticons/img/smiley-cool.gif)
