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-   -   Considering Pump Removal- Need Advice! (https://www.neurotalk.org/scs-and-pain-pumps/144925-considering-pump-removal-advice.html)

Rrae 02-16-2011 10:20 PM

Absolutely
 
Quote:

Originally Posted by Mark56 (Post 744909)

Pooh brings up great questions. Leesha, you are going to want to give hers some real thought.

Yep,
Mark56:hug:

Yes, ..... get a good Blood workup done.
Just try to get as best an assessment you can to rule out some of the most common issues. This will help you in getting some sort of baseline of what your medical team can try to target.
Unfortunately, alot of this 'madness' is a matter of process of elimination.
Not fun.

Leesha Rae - such a beautiful name! :hug:

pooh_ac 02-16-2011 10:52 PM

Quote:

Originally Posted by Mark56 (Post 744909)
Ya know, I just knew you all would crop up and give Leesha what she needed [oh, and Pooh, did you catch what Rae #1 wrote about you?]. So, now, do we need to refer to each of you by number Rae#1 and Rae#2?

Pooh brings up great questions. Leesha, you are going to want to give hers some real thought.

Yep,
Mark56:hug:

Ponders just who has been working too hard, then recalls just got home from shift on floor13.75 hrs, alarm set for 3:30 am:eek::eek::thud::holysheep::Scratch-Head::Ponder::Dunno::Doh::Bang-Head: hmm something wrong with this picture

Rrae 02-16-2011 11:34 PM

Quote:

Originally Posted by pooh_ac (Post 745194)
Ponders just who has been working too hard, then recalls just got home from shift on floor13.75 hrs, alarm set for 3:30 am:eek::eek::thud::holysheep::Scratch-Head::Ponder::Dunno::Doh::Bang-Head: hmm something wrong with this picture

OK THAT DOES IT!!!
Where is your supervisor!! :eek:
We are gonna pack up the mule and head your way and set this straight! :cool:
This is just plain WRONG!! POOOOOOH!!!

Mark56 02-17-2011 12:32 AM

Pooh, too long a shift with too little time off
 
I remember when we had private aircraft in our company back when I was employed at the big company..... and there were ALL of these RULES about CREW REST, so many hours of flight time, so many hours of rest BEFORE flying again. No ifs, ands, buts,..........

So, now how can the medical community, which has people's lives in their very fingers in surgery have crew without adequate rest????????

Reckon I had better get out a rope for one of Rae's Mules and pack it up.

Anyway, Leesha, there has been a bunch of good suggestion by Pooh, even though she was probably dead tired....

Rest Pooh,
Mark56:)

pooh_ac 02-17-2011 10:35 PM

Quote:

Originally Posted by Mark56 (Post 745222)
I remember when we had private aircraft in our company back when I was employed at the big company..... and there were ALL of these RULES about CREW REST, so many hours of flight time, so many hours of rest BEFORE flying again. No ifs, ands, buts,..........

So, now how can the medical community, which has people's lives in their very fingers in surgery have crew without adequate rest????????

Reckon I had better get out a rope for one of Rae's Mules and pack it up.

Anyway, Leesha, there has been a bunch of good suggestion by Pooh, even though she was probably dead tired....

Rest Pooh,
Mark56:)

Dead, mayhaps, tired yes. oh well......
Leesha r u out there?

Leesha33 02-20-2011 04:16 PM

Ok...I love you guys!!!
 
:D

WOW do I feel the love! You are all so AMAZING! I wish I had found you sooner! Oh, and thanks for the compliment on the name :p My actual name is Elisha Rae but everyone calls me Leesha.

Thank you for all of the suggestions. Yes, I swell up even if the heat is on too high in my house and I eat a very low sodium diet and I drink a lot of water.

I only see my pain Dr. once per year, unless he is doing an injection or something, and coincidentally I am scheduled with him during my next pump refill at the beginning of April. He is an extremely intelligent and friendly Doctor and he is precise and a perfectionist but sometimes I want to chain the guy to his seat because he can be all over the place. Sometimes he is all about "doing whatever it takes" and sometimes I can tell that he is rushing me out. I told him about the water retention and was told to wear compression socks that go up to my thighs- like when you have surgery to prevent blood clots. Gee those will look fashionable and be comfortable at my aunt's pool this summer :rolleyes: I will sum him up-
He knows that I prefer to avoid pills but on occasion I have taken BT meds. I've had the pump for 4 years and it took about 2 years to get the right mix of meds to make a dent in my pain. This is the #1 thing I would like to stress to anyone considering it. I had weekly appointments for what felt like a year and then BAM we switched from Morphine to Dilaudid and started it all over again (I wanted to cry- actually what am I talking about- I did cry!) So typical me was suffering in the midst of all this but didn't speak up enough and my hubby kept telling me to ask for meds and I let myself suffer rather than come out and ask. There is a stigma with that due to the people that abuse prescription drugs (don't get me started on that). So I realized I was being stupid and asked for some meds. He prescribes me 1/2 of an Ultram every 4-6 hours! I was on 100mcg Fentanyl for months..um I might as well eat a gumball and at least enjoy it because it would have the same effect on my pain. So a few months later I was basically in the same situation and when asked to rate my pain I was honest and gave a number fairly high on the pain scale. I didn't ask for meds or tell them that Ultram didn't work for me last time (I should have, I know). So the nurse returns with my papers to leave and says that my Dr. also wrote out a prescription to ease my discomfort. I didn't bother looking because I was expecting it to be Ultram/Tramadol. So I'm on the elevator leaving and look at the prescription and it's for morphine pills. :confused: He is so confusing and I never know what I am getting with him..insert the line from Forest Gump :ROTFLMAO:
I have grown close to most of the nurses there so I think I will start with them. In the meantime I will have a GP check out some of the other things that you mentioned.

Again I am so glad that I found this forum and I will be a regular now and would love to help anyone out there considering a pain pump, that has one, or is having issues, etc. It's also nice to talk to people that understand CP, not just the pump.

Thank you all so much!:You-Rock: I will keep you posted on everything. You've also sparked my interest on the SCS. I may just browse through previous posts and read a little more about it.

Enjoy what is left of the weekend! :grouphug:

Mark56 02-20-2011 11:02 PM

Cool Leesha Rae!
 
You are plugged in!:Good-Post::You-Rock: Thank you for your up and up attitude about willingness to help anyone else with questions or problems pain pump wise!:Thanx:

We build and build on the notion of sharing and caring. That is what this is ALL about. Truly, I hope your doc will have a clue, get a clue, focus on you, or pass you to someone who is dedicated to your case. If the pump is not working and he is "easing" your discomfort by offering morphine pills in addition to the pump... well, what is the pump doing in there, just taking up space?

Tell ya, I have had a good experience so far with the SCS and withdrew from all pain meds [morphine was one of them] after my permanent implant surgery last summer. I am SO glad to be off of the pain prescriptions and am now networking hot and heavy striving in this lousy market to find work to regain a toehold in my profession. I feel blessed.

Prayin for you Leesha, for sure,
Mark56:grouphug:

anon21816 02-21-2011 01:33 PM

Leesha that was a great post. Its awful when the doctor just cant get it right.

I know before I had my SCS implanted in Aug 2010 I was having Lignucaine and Ketamine infusions on a monthly basis. And to be honest they were just a waste of time but like that I didnt want to complain in case I was putting anyone out:eek:WRONG!!!!!

I now have the SCS and I have some good relief in my legs. I still take some of my pain meds as I cant get enough relief in my lower back, but its better than having nothing at all. Im a more relaxed person too....

Good luck

Jackie :)

pooh_ac 02-21-2011 07:58 PM

Quote:

Originally Posted by Leesha33 (Post 746332)
:D

WOW do I feel the love! You are all so AMAZING! I wish I had found you sooner! Oh, and thanks for the compliment on the name :p My actual name is Elisha Rae but everyone calls me Leesha.

Thank you for all of the suggestions. Yes, I swell up even if the heat is on too high in my house and I eat a very low sodium diet and I drink a lot of water.

I only see my pain Dr. once per year, unless he is doing an injection or something, and coincidentally I am scheduled with him during my next pump refill at the beginning of April. He is an extremely intelligent and friendly Doctor and he is precise and a perfectionist but sometimes I want to chain the guy to his seat because he can be all over the place. Sometimes he is all about "doing whatever it takes" and sometimes I can tell that he is rushing me out. I told him about the water retention and was told to wear compression socks that go up to my thighs- like when you have surgery to prevent blood clots. Gee those will look fashionable and be comfortable at my aunt's pool this summer :rolleyes: I will sum him up-
He knows that I prefer to avoid pills but on occasion I have taken BT meds. I've had the pump for 4 years and it took about 2 years to get the right mix of meds to make a dent in my pain. This is the #1 thing I would like to stress to anyone considering it. I had weekly appointments for what felt like a year and then BAM we switched from Morphine to Dilaudid and started it all over again (I wanted to cry- actually what am I talking about- I did cry!) So typical me was suffering in the midst of all this but didn't speak up enough and my hubby kept telling me to ask for meds and I let myself suffer rather than come out and ask. There is a stigma with that due to the people that abuse prescription drugs (don't get me started on that). So I realized I was being stupid and asked for some meds. He prescribes me 1/2 of an Ultram every 4-6 hours! I was on 100mcg Fentanyl for months..um I might as well eat a gumball and at least enjoy it because it would have the same effect on my pain. So a few months later I was basically in the same situation and when asked to rate my pain I was honest and gave a number fairly high on the pain scale. I didn't ask for meds or tell them that Ultram didn't work for me last time (I should have, I know). So the nurse returns with my papers to leave and says that my Dr. also wrote out a prescription to ease my discomfort. I didn't bother looking because I was expecting it to be Ultram/Tramadol. So I'm on the elevator leaving and look at the prescription and it's for morphine pills. :confused: He is so confusing and I never know what I am getting with him..insert the line from Forest Gump :ROTFLMAO:
I have grown close to most of the nurses there so I think I will start with them. In the meantime I will have a GP check out some of the other things that you mentioned.

Again I am so glad that I found this forum and I will be a regular now and would love to help anyone out there considering a pain pump, that has one, or is having issues, etc. It's also nice to talk to people that understand CP, not just the pump.

Thank you all so much!:You-Rock: I will keep you posted on everything. You've also sparked my interest on the SCS. I may just browse through previous posts and read a little more about it.

Enjoy what is left of the weekend! :grouphug:

Leesha, Glad you didnt let our little train derailment throw you off sometimes when the tired and pain overtakes a body the only thingy left to do is add leavity or some sense of the insane:D. Keeps some sense of sanity. Glad you are considering all the issues. Please please remember the pain you were having before the "correct cocktail" was discovered. I truely hate to see anyone in pain (guess why Im a nurse:cool:). I know from which I speak, the pain that tends to overtake a person when the SCS battery takes a dump, or the charger decides it no longer wants to work or the time between the trial and the permant is truely from the home of Lucifer! I understand the weight gain issues and your concerns but pain management or nonmanagment must be cosidered. TC and hope to see ya soon

NextLA 07-13-2011 05:32 AM

Hello,I have same Problem : (
 
@Leesha
This has to b short 4 now,sorry--but I wanted to respond ASAP
Ok, i have the MEDTRONIC pain pump and have the same exact problem with tolerance.
My Md also denies that there is tolerance.
*moderator edit*

Everything but the tolerance most of us KNOW OURSELVES happens,which is THE DRUG STOPS WORKING after a while on the pump.
The pain management specialist I saw b4 getting the pump refused to implant them or prescribe opioid pain meds -Because- the pumps werent lasting.
I think Medtronics is borderline criminal here, and I bet they will be sued for millions once the fact they are misrepresenting the drug and treatment outlooks.
Ithink they hedge on either the patient dying or the condition progressing.
The fact is: pain pumps only work as advertised in patients who have malignant pain b/c they won't be around long enough for all the pain management problems... ,


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