Large Scale Central

Our Devon Sinsley needs your prayers.

General Discussion
#561

Devon Sinsley said: I am also trying to get into to see a pain management specialist to help with the chronic pain, especially the nerve pain that no one wants to admit I have.

Oh dear. With the current climate in attitudes toward pain treatment … :frowning:

My speculation is that if they admit you have it then they have to give you something for it then they have to a head-on collision with the paranoia of the moment and their one sledgehammer fits all method of dealing with the thing. And facing that is uncomfortable for them.

Fortunately, in a perverse sort of way, I got off with the chronic fatigue being the far greater problem than the fibro and the neuropathy.

I know some and am related to some others who have it the other way round.

Which is seriously Un-fun

#562

Glad to hear from you, Devon. Hopefully the pain management folks can get you to a point where you can better cope with the pain.

Now to discuss the pain you have caused me …

Devon Sinsley said:

…The only pop I drink is cola mixed with my whiskey. …

WHY in the world would you mix pop with good whiskey (http://www.largescalecentral.com/externals/tinymce/plugins/emoticons/img/smiley-yell.gif)? Now that is really painful (http://www.largescalecentral.com/externals/tinymce/plugins/emoticons/img/smiley-tongue-out.gif).

Thinking about ya Buddy.

#563

if you insist to drink water(erks…), be carefull. long ago, i tried to loose some pounds, and replaced my soft drinks with mineral water. got headakes and a metalic taste on the tongue. replaced that so called water with coal-filtered rainwater and i was fine.

…She wants me on a med I took when this all started that made me feel like crap and didn’t do anything…

do you realize, that the net is not just for hobbies? since they nearly killed me with bad interaction of different medicines (blood thinners), when they give me some new medicine, i get the magnifying glass and read the fineprint. then i look up everything on wiki.

once you start asking more or less intelligent questions, they get more carefull, what they prescribe.

#564

My experience with the pain management clinic (at UC San Francisco) was in the early 1990s and to the best of my recollection did not involve the use of pain meds at all. Before being referred to the PMC I was on megadoses of either Tylenol or Ibuprofen as well as small but regular doses of Vicodin. Aside from the more well-known issues with pain meds, they make me nauseous.

I still use the biofeedback techniques to this day. Lately, I have been practicing mindful meditation with much success. I still have chronic pain but with the coping skills I have learned over the years and the occasional Tylenol (okay, and a Long Island Ice Tea or two) I manage to live a happy life.

#565

Dan Hilyer said:

Glad to hear from you, Devon. Hopefully the pain management folks can get you to a point where you can better cope with the pain.

Now to discuss the pain you have caused me …

Devon Sinsley said:

…The only pop I drink is cola mixed with my whiskey. …

WHY in the world would you mix pop with good whiskey (http://www.largescalecentral.com/externals/tinymce/plugins/emoticons/img/smiley-yell.gif)? Now that is really painful (http://www.largescalecentral.com/externals/tinymce/plugins/emoticons/img/smiley-tongue-out.gif).

Thinking about ya Buddy.

I drink it either with cola or on the rocks depending on the mood.

#566

Korm Kormsen said:

if you insist to drink water(erks…), be carefull. long ago, i tried to loose some pounds, and replaced my soft drinks with mineral water. got headakes and a metalic taste on the tongue. replaced that so called water with coal-filtered rainwater and i was fine.

…She wants me on a med I took when this all started that made me feel like crap and didn’t do anything…

do you realize, that the net is not just for hobbies? since they nearly killed me with bad interaction of different medicines (blood thinners), when they give me some new medicine, i get the magnifying glass and read the fineprint. then i look up everything on wiki.

once you start asking more or less intelligent questions, they get more carefull, what they prescribe.

Oh I do my research. My doc does not really like it when I show up to our appointments. I am not a WebMD guy. I look for trade articles written from clinical studies. That bugs the crap out of her I can tell. I have on a couple of occasions asked to see specific images that have been taken so that I can verify that things are as they should be. I learn what terms like “referred nerve pain” means then ask her why I am feeling it. The NP that is her assistant loves it, because I can ask intelligent question specifically related to my treatment and understand the answers I am given. I am a born researcher so there is no getting by me. I also know what is credible information and how to get it. She was surprised when I brought her an article from a neurosurgery trade journal.

The drug they put me on, and may want to put me on again, is a nasty little diuretic. It just strips the body of everything. And as to water. I am the assistant manager of a public water utility now for 22 years. I know a thing or two about water. And you are right, you need to be careful and know what your drinking. Not all water is created equal.

#567

I like the way you do doctor appointments! (https://largescalecentral.com/externals/tinymce/plugins/emoticons/img/smiley-cool.gif)

#568

Well I have a new issue. This one hurts like hell but is quite interesting on the hows and whys it does what it does. So this pain I have been experiencing has caused me to do some research. The normal procedure is to have the discharge end of my shunt tubing comes down my right side and then is punched into my gut cavity and then it is shoved in and allowed to go where it wants which is normally down in your pelvis. They can’t tie it down because your guts move all the time and it would saw through your intestines. So it is left to roam where it wants. One of the complications that can rise up is that it can get balled up between the liver and the rib cage/diaphragm. This then rubs on the vagus nerve (thanks to Steve I know what that is now). And that then can be confused in the brain as shoulder pain (that is called referred nerve pain). Well I spent 5 hours in ER on Friday convinced I had another kidney stone. The CT scan revealed that the end of my shunt tube was behind my liver and rubbing on my rib cage. Hence the pain. So today I called my surgeon. She reviewed this current CT scan and said it was indeed what was causing my pain (I have been telling her this for awhile). Well the interesting part is that she had told me from the get go that this thing would move. But I had no idea that it could move around so much. So much that it can pull the tube from my pelvis and move it all the way to my liver. Well she sent me a series of Xrays from the start of this to last Friday. Four images, in Dec the tip of this thing is in my pelvis, January its up by my liver, Feb its down at my pelvis, April its back up on my liver. I would never have guessed it could move so much.

Now the answer to this to either let it move back on its own. That requires anti-inflammatories and me sleeping on my left side so my liver falls away from my rib cage and hopefully it will come loose and move somewhere else. The other option is to have a gastric surgeon go in and pull it out and reposition it. Either way there is no guarantee it won’t end up right back there. Now I did ask why it can’t be put on the left side away from my liver. The article I read suggests this as the fix. She said we would have to talk to the gastric surgeon and see if he can get it there. It not her area of expertise. But as far as she is concerned she doesn’t have a problem with it being on my left.

So I just find it fascinating that your guts move around so much that in 5 months this tube can go up and down my gut cavity twice.

#569

Oy vey ! (https://largescalecentral.com/externals/tinymce/plugins/emoticons/img/smiley-undecided.gif)

#570

Devon Sinsley said:

Well I have a new issue. This one hurts like hell but is quite interesting on the hows and whys it does what it does. So this pain I have been experiencing has caused me to do some research. The normal procedure is to have the discharge end of my shunt tubing comes down my right side and then is punched into my gut cavity and then it is shoved in and allowed to go where it wants which is normally down in your pelvis. They can’t tie it down because your guts move all the time and it would saw through your intestines. So it is left to roam where it wants. One of the complications that can rise up is that it can get balled up between the liver and the rib cage/diaphragm. This then rubs on the vagus nerve (thanks to Steve I know what that is now). And that then can be confused in the brain as shoulder pain (that is called referred nerve pain). Well I spent 5 hours in ER on Friday convinced I had another kidney stone. The CT scan revealed that the end of my shunt tube was behind my liver and rubbing on my rib cage. Hence the pain. So today I called my surgeon. She reviewed this current CT scan and said it was indeed what was causing my pain (I have been telling her this for awhile). Well the interesting part is that she had told me from the get go that this thing would move. But I had no idea that it could move around so much. So much that it can pull the tube from my pelvis and move it all the way to my liver. Well she sent me a series of Xrays from the start of this to last Friday. Four images, in Dec the tip of this thing is in my pelvis, January its up by my liver, Feb its down at my pelvis, April its back up on my liver. I would never have guessed it could move so much.

Now the answer to this to either let it move back on its own. That requires anti-inflammatories and me sleeping on my left side so my liver falls away from my rib cage and hopefully it will come loose and move somewhere else. The other option is to have a gastric surgeon go in and pull it out and reposition it. Either way there is no guarantee it won’t end up right back there. Now I did ask why it can’t be put on the left side away from my liver. The article I read suggests this as the fix. She said we would have to talk to the gastric surgeon and see if he can get it there. It not her area of expertise. But as far as she is concerned she doesn’t have a problem with it being on my left.

So I just find it fascinating that your guts move around so much that in 5 months this tube can go up and down my gut cavity twice.

Email me…we need to talk about this…

#571

Leeches and Blood letting!

Bad Humours … man.

#572

Hmm, vagus, that brings to mind something; I wonder if you can get odds in Vegas where the tube will be next month.

#573

You can fix just about anything with duck tape.

So if this is a common complication why not do it on the left side to begin with?

#574

There you go, making sense again. You know you are going to have to quit doing that.

#575

Joe Zullo said:

Oy vey ! (https://largescalecentral.com/externals/tinymce/plugins/emoticons/img/smiley-undecided.gif)

Ya what Joe said !

#576

Gregory Hile said:

So if this is a common complication …

It’s early and my brain gets random at this time of day - what would a band named Common Complication play?

#577

Forrest Scott Wood said:

Gregory Hile said:

So if this is a common complication …

It’s early and my brain gets random at this time of day - what would a band named Common Complication play?

Aren’t they the ones that did Constant Constipation?

#578

Ok, model airplanes use a weighted end on the fuel tube that goes into the fuel tank, to keep the tube at the bottom of the tank. Its called a “clunker”. Maybe you need a clunker on the end of your tube. (https://largescalecentral.com/externals/tinymce/plugins/emoticons/img/smiley-wink.gif)No, the drain tube, keep it “PG” rated.

So its not as simple as grabbing a 1/4 inch drill bit, drilling a hole in your skull, tapping the hole, and then threading in a pop valve. Gee, this medical stuff gets kind of complicated, don’t it?

#579

David Maynard said:

So its not as simple as grabbing a 1/4 inch drill bit, drilling a hole in your skull, tapping the hole, and then threading in a pop valve. Gee, this medical stuff gets kind of complicated, don’t it?

Agreed, but fortunately, Devon has us …

#580

Gee, this medical stuff gets kind of complicated, don’t it?

Youngest nephew in his younger days kept saying complicated as complexicated.

Now he fixes Army helos for a living - and there is a gizmo which truly is complexicated.

Hey Devon, something to do for about 23 seconds of entertainment might be when talking to doctor watch their expression after you say something like,

“You know, this thing is getting rather more complexicated than desired.”