lindao1
07-10-2003, 05:42 PM
Warm wishes to everyone. I'm so thankful to feel I have such great friends here who understand COMPLETELY what CP is and what it can do to a person and their quality of life. I just found out today that I'll be going thru my 2nd pain pump trial next Wed., 7/16. I'm scared to death after the horrible time I had with the lst trial. Of course, my PM dr. did not talk with ME (what's new there - he never talks WITH his patients) but the girl at his office who scheduled the trial said it would be the same as before, but that he may try more morphine or another drug to see if I get a longer period of relief.
I know I've complained so much about my PM doc's treatment plan in my situation, snd I do wish I could get another one, but at this late stage and being in the middle of the trials, I just don't feel I could handle going thru all new stuff again. My pain has become so unbearable with the tolerance to the oxy, that I can't deal with anything else right now. Every day is an ordeal just trying to bear the pain. If dr. thinks the morphine pump is my answer, I'm just too tired and drained from the pain, to argue anymore about his treatment agenda. I still think he's out for the insurance money (that's a whole other story), but if the morphine pump will work, it will be an answer to my prayers.
Sorry, I didn't mean to ramble, it's just that the past two weeks my pain has tripled (since having the unsuccessful lst trial). I just wanted to ask of all of you wonderful folks to please pray for me that this trial will be a success and I can move on to the permanent pump and finally get some pain relief from this last year.
I know how understanding you all are when it comes fo CP so I just wanted to let you know the lastest on my situation. Thanks so much for listening, for being there for me and for caring. Much Love, Lindao1 :wave:
[This message has been edited by lindao1 (edited 07-10-2003).]
I know I've complained so much about my PM doc's treatment plan in my situation, snd I do wish I could get another one, but at this late stage and being in the middle of the trials, I just don't feel I could handle going thru all new stuff again. My pain has become so unbearable with the tolerance to the oxy, that I can't deal with anything else right now. Every day is an ordeal just trying to bear the pain. If dr. thinks the morphine pump is my answer, I'm just too tired and drained from the pain, to argue anymore about his treatment agenda. I still think he's out for the insurance money (that's a whole other story), but if the morphine pump will work, it will be an answer to my prayers.
Sorry, I didn't mean to ramble, it's just that the past two weeks my pain has tripled (since having the unsuccessful lst trial). I just wanted to ask of all of you wonderful folks to please pray for me that this trial will be a success and I can move on to the permanent pump and finally get some pain relief from this last year.
I know how understanding you all are when it comes fo CP so I just wanted to let you know the lastest on my situation. Thanks so much for listening, for being there for me and for caring. Much Love, Lindao1 :wave:
[This message has been edited by lindao1 (edited 07-10-2003).]
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Tiddgys
07-13-2003, 11:56 AM
Lindao1..
You have my very best well wishes and my prayers will be with you very soon pet..
Please try to stay calm it will soon be over and then hopefully you will get the real thing and be on your way to the real pain relief yes..
Keep us posted poppet..
Love tiddgys xxx
------------------
lower Lumber probs.
L2 Bulging, But Docs will not touch as there is no nerve trouble there.
3 Level fusion L3-L4 L4-L5 L5-S1
No better after fusion.
2 Discograms
Loss of bladder control (OK NOW )
Lots of physio..
2 MRI'S
Water Theraphy..
1 Bone scan
1 Cat Scan
Loads of ESI'S
lots of Mediacation and i'm allergic to most of them..
Now Under P/M CONSUTANT HAVE BEEN FOR THE PASS SIX MONTHS..
Need Friends and Comfort, with the odd laugh..
You have my very best well wishes and my prayers will be with you very soon pet..
Please try to stay calm it will soon be over and then hopefully you will get the real thing and be on your way to the real pain relief yes..
Keep us posted poppet..
Love tiddgys xxx
------------------
lower Lumber probs.
L2 Bulging, But Docs will not touch as there is no nerve trouble there.
3 Level fusion L3-L4 L4-L5 L5-S1
No better after fusion.
2 Discograms
Loss of bladder control (OK NOW )
Lots of physio..
2 MRI'S
Water Theraphy..
1 Bone scan
1 Cat Scan
Loads of ESI'S
lots of Mediacation and i'm allergic to most of them..
Now Under P/M CONSUTANT HAVE BEEN FOR THE PASS SIX MONTHS..
Need Friends and Comfort, with the odd laugh..
lindao1
07-13-2003, 06:07 PM
Thanks SO much Tiddygs for your kind words and concern!
I've come to realize I can always count on you to send me a big "hug" just when I need one!!
Yes, I'll be glad with all of this is over with! And I know you feel the same way because of your impending trial. And you have to endure much more than I do in mine!
I, too, have been keeping you in my prayers and will continue to do so. You are truly an inspiration to me and I'm so thankful for that!
Keep the faith, my friend, and know that I deeply care about you and your upcoming trial. I will let you know how this 2nd trial goes when it's over with. Much love and many prayers to you. Lindao1 :D
I've come to realize I can always count on you to send me a big "hug" just when I need one!!
Yes, I'll be glad with all of this is over with! And I know you feel the same way because of your impending trial. And you have to endure much more than I do in mine!
I, too, have been keeping you in my prayers and will continue to do so. You are truly an inspiration to me and I'm so thankful for that!
Keep the faith, my friend, and know that I deeply care about you and your upcoming trial. I will let you know how this 2nd trial goes when it's over with. Much love and many prayers to you. Lindao1 :D
pixiepoodle
07-13-2003, 09:41 PM
Hi Ladies,
I have been thinking about both of you and wish you success with both of your upcoming pump trials. I do have a question for lindao1 about your 1st trial. Did you have the 1 day trial consisting of only an injection since you only had 6 hrs of relief? If you did, then that might make sense because the drug would wear off. Whereas with the pump, you will have the meds pumped continuously 24 hrs a day and your relief would be continuous and more stablized.
However, when you first start out after getting the pump, the dosage will not be that high so you will probably find yourself going in for an adjustment every couple weeks or so for the first 6 mos. And when the dosage doesn't work anymore, don't delay going in because you will only suffer until you do.
My dr. would not increase it very much the first 5 or 6 times, but after that, he would jump the increases up considerably. As an example, he would only increase my Fentanyl 2 micrograms at a time and now he does it 10 micrograms every time I ask for an increase.
Since I have a pump for Fibromyalgia and my pain is not always in the same place (one day it can be my feet and the next day my shoulders), I may have to have my dosage increased more often than someone with back pain (even though I had back pain consistently, the pain is caused by muscle spasms and not from a bad disc like most people on this board so I can only assume the pain is different).
I have heard anyone on this board who has a pain pump due to pain caused by bad discs say how often their meds are increased, how much, or if they reached a dosage that has worked for a long time period (say over a year or 2).
Anyway, I will keep you both in my prayers that you do well during the trial and if you go onto get a pump, that you get the much needed pain relief that I have gotten from having one.
I have been thinking about both of you and wish you success with both of your upcoming pump trials. I do have a question for lindao1 about your 1st trial. Did you have the 1 day trial consisting of only an injection since you only had 6 hrs of relief? If you did, then that might make sense because the drug would wear off. Whereas with the pump, you will have the meds pumped continuously 24 hrs a day and your relief would be continuous and more stablized.
However, when you first start out after getting the pump, the dosage will not be that high so you will probably find yourself going in for an adjustment every couple weeks or so for the first 6 mos. And when the dosage doesn't work anymore, don't delay going in because you will only suffer until you do.
My dr. would not increase it very much the first 5 or 6 times, but after that, he would jump the increases up considerably. As an example, he would only increase my Fentanyl 2 micrograms at a time and now he does it 10 micrograms every time I ask for an increase.
Since I have a pump for Fibromyalgia and my pain is not always in the same place (one day it can be my feet and the next day my shoulders), I may have to have my dosage increased more often than someone with back pain (even though I had back pain consistently, the pain is caused by muscle spasms and not from a bad disc like most people on this board so I can only assume the pain is different).
I have heard anyone on this board who has a pain pump due to pain caused by bad discs say how often their meds are increased, how much, or if they reached a dosage that has worked for a long time period (say over a year or 2).
Anyway, I will keep you both in my prayers that you do well during the trial and if you go onto get a pump, that you get the much needed pain relief that I have gotten from having one.
lindao1
07-14-2003, 01:17 PM
Pixiepoodle, my friend! So glad to hear from you and I appreciate your kindness and concern and prayers.
To answer your question, my 1st trial was just the single injection of morphine, not sure of the dose. It only gave me the 6 hours of relief but then I got an awful headache, so bad that I couldn't think of any thing else. It like blew the pain relief out the window. Now dr wants me to go thru ANOTHER trial injection. With all the info on this site and even Medtronics site, I've never heard of anyone having to have a 2nd trial - this is what concerns me. It still has me so confused.???.
Oh well, at this point I'm just going with what the dr. says.
By the way Pixie, I too have fibromyalgia in addition to all the bad discs and adhesions from 2 failed neck surgeries and the brain surgery, so I certainly understand your situation. It's tough to deal with. I'm hoping the pump (if I ever get to the real one - ha!)will take care of most of the pain everywhere. I hope so anyway. At least make it bearable - that's all I ask.
I, too was wondering about initial dosages and the frequency of having the meds increased. I'm still really confused about this one, but I guess there's no "norm" as everyone is different with different pain levels and tolerances. I guess I'll just have to wait and see.
Pixiepoodle, thanks again for all the great info and your concern and prayers. Your are a ray of sunshine! Much love, Lindao1
To answer your question, my 1st trial was just the single injection of morphine, not sure of the dose. It only gave me the 6 hours of relief but then I got an awful headache, so bad that I couldn't think of any thing else. It like blew the pain relief out the window. Now dr wants me to go thru ANOTHER trial injection. With all the info on this site and even Medtronics site, I've never heard of anyone having to have a 2nd trial - this is what concerns me. It still has me so confused.???.
Oh well, at this point I'm just going with what the dr. says.
By the way Pixie, I too have fibromyalgia in addition to all the bad discs and adhesions from 2 failed neck surgeries and the brain surgery, so I certainly understand your situation. It's tough to deal with. I'm hoping the pump (if I ever get to the real one - ha!)will take care of most of the pain everywhere. I hope so anyway. At least make it bearable - that's all I ask.
I, too was wondering about initial dosages and the frequency of having the meds increased. I'm still really confused about this one, but I guess there's no "norm" as everyone is different with different pain levels and tolerances. I guess I'll just have to wait and see.
Pixiepoodle, thanks again for all the great info and your concern and prayers. Your are a ray of sunshine! Much love, Lindao1
pixiepoodle
07-15-2003, 12:28 AM
Hi Linda01,
Since you had the same trial I had, I think your dr. wants to try a stronger dose to see how much more effective it is in order to start your pump out with a more accurate dose.
I had the same miseable headache after my trial (which has a specific name, but my Fibro fog has made me forget what its called). I got mine because I was up walking around within an hr. after the injection because they asked me how the injection was working and I said in order to tell I would have to get up and walk to see if my hips and feet still hurt (which was were my pain was that day).
I remember the staff freaking out cause I started pushing my IV around while walking rapidly and they said to go slowly and get back in bed and lay flat down. Well, I felt fantastic thru the next morning aftr they let me go home. Later that day I started to get a horrendous headache and when I called their office they said to wait and see if it went away in a day or so and if it didn't, they could do a blood patch to fix it. Thankfully, it went away after a couple of days.
A member of this board named Shoreline posted somewhere on here about the other reason you can get the headache having to do with losing spinal fluid out of the needle puncture site the fluid doesn't clot like blood does and that is really where the blood patch helps.
I really think you will do better with this test and have more pain relief. Everyone who gets a pump has to go thru getting their dosage upped frequently the first year. If they started me out at the dose I am now at, it would probably have killed me by shutting down my respiratory system, so they need to adjust it up slowly.
The main thing to remember is to call the office every time your pain starts increasing so they can schedule you an appt. to have the dosage upped. My dr. and his staff told me to come in if my pain was not getting relieved and not to wait until refill time. Between the meds you get for post-op pain after surgery, your pain level should be quite bearable. After a few mos., you could ask your dr. for break thru meds for those bad weather days or in case you over do something.
Sometimes I feel so good that I forget there are certain things I shouldn't be doing (i.e., carrying a bucket of water) and then I pay for it by going into a flareup because my muscles are weak from having Fibro for 7 yrs. But with the pump, a flareup only feels like a normal day of Fibro and then I have to take my break thru meds (Ultram and Soma) and then I feel fine.
I am looking forward to hearing how your trial goes. Just keep thinking postive thoughts. I hope you don't get the headache this time - just remember to lay flat for the amt. of time you are told to.
Since you had the same trial I had, I think your dr. wants to try a stronger dose to see how much more effective it is in order to start your pump out with a more accurate dose.
I had the same miseable headache after my trial (which has a specific name, but my Fibro fog has made me forget what its called). I got mine because I was up walking around within an hr. after the injection because they asked me how the injection was working and I said in order to tell I would have to get up and walk to see if my hips and feet still hurt (which was were my pain was that day).
I remember the staff freaking out cause I started pushing my IV around while walking rapidly and they said to go slowly and get back in bed and lay flat down. Well, I felt fantastic thru the next morning aftr they let me go home. Later that day I started to get a horrendous headache and when I called their office they said to wait and see if it went away in a day or so and if it didn't, they could do a blood patch to fix it. Thankfully, it went away after a couple of days.
A member of this board named Shoreline posted somewhere on here about the other reason you can get the headache having to do with losing spinal fluid out of the needle puncture site the fluid doesn't clot like blood does and that is really where the blood patch helps.
I really think you will do better with this test and have more pain relief. Everyone who gets a pump has to go thru getting their dosage upped frequently the first year. If they started me out at the dose I am now at, it would probably have killed me by shutting down my respiratory system, so they need to adjust it up slowly.
The main thing to remember is to call the office every time your pain starts increasing so they can schedule you an appt. to have the dosage upped. My dr. and his staff told me to come in if my pain was not getting relieved and not to wait until refill time. Between the meds you get for post-op pain after surgery, your pain level should be quite bearable. After a few mos., you could ask your dr. for break thru meds for those bad weather days or in case you over do something.
Sometimes I feel so good that I forget there are certain things I shouldn't be doing (i.e., carrying a bucket of water) and then I pay for it by going into a flareup because my muscles are weak from having Fibro for 7 yrs. But with the pump, a flareup only feels like a normal day of Fibro and then I have to take my break thru meds (Ultram and Soma) and then I feel fine.
I am looking forward to hearing how your trial goes. Just keep thinking postive thoughts. I hope you don't get the headache this time - just remember to lay flat for the amt. of time you are told to.
lindao1
07-15-2003, 01:26 PM
Thanks again, Pixiepoodle! Such great information - what would I do without you and the other great people here! You have eased my mind considerably. The past few weeks I think my stress level went thru the roof worrying about all this (which hasn't helped my pain level, that's for sure!).
Anyway, just wanted to again relay my sincere gratitude to you and everyone who has been so kind.
I'll let you all know how this 2nd trial goes as soon as I can. God Bless you all. Lindao1
Anyway, just wanted to again relay my sincere gratitude to you and everyone who has been so kind.
I'll let you all know how this 2nd trial goes as soon as I can. God Bless you all. Lindao1