pixiepoodle
02-04-2002, 01:03 PM
Hi everyone,
On Friday I had my surgery to implant a medine pump in my stomach that injects a small amt. of MS Contin (1 mg per day on a continuous basis) directly into my spine thru a catheter attached to the pump which is inserted under my skin & goes around my side to my spine. The surgery took about 1 to 1 1/2 hrs. and I was kept in ICU for about 15 hrs. before being moved to a regular room. When they woke me up in ICU, I was in bad pain because they don't give any pain meds until they wake you up. I then rec'd demerol directly into the IV in my wrist & I had instant complete pain relief. I ran into problems though when they next switched to giving me 4 mg of morphine for pain instead of more Demerol. When the morphine wore off, I started to have a headache & asked the nurse if I was getting what is called a rebound headache because my body was craving more morphine (I didn't get any answer to my question), instead they gave me 6 mg of morphine. When they went to move me to my regular room 3 hrs. later, I got extremely dizzy on the ride there & when I had to sit up to move from the bed I travled in to the bed in the new room, my head was spinning & splitting open so bad I threw up. I ended up throwing up all day because I had too much morphine in my system. I had the same reaction when I had surgery 10 years ago & I had a morphine pump. I had to stay in the hospital an extra day so they could flush the drug out of my system thru the IV bag. During that time, I could have no more pain meds for my incisions, so as long as I laid still & did not move, I had no pain. The next day, they gave me 2 Vicodin & I have felt fantastic ever since getting a prescription for those.
Let me say at this point that the day I went to get the surgery, my Fibro pain was so bad, that I almost asked for a wheelchair when I got to the admitting dept. After the surgery, I have had no Fibro pain whatsoever because the pump has been working since it was implanted. I plan to return to work tomorrow (Tues.) because I feel so good. I just have to be careful not to lift, pull or push anything heavy for 6 weeks so that I can heal properly. I have a desk job that involves typing & other administrative duties so I should have no problems going back to work. My incision on my stomach is longer than I think was really necessary - 4 inches. I read a post from another person with an implant & their incision was only 2 1/2 inches. The incision along my spine is 2 inches. The dr. used metal staples which come out next Tues. & I already know that their removal will be a painful pinch for each one since I have had metal staples for another surgery once before - but it is a small price to pay for no longer having to be in pain on a daily basis. Since I do not have that much morphine being pumped into my spine on a daily basis, I only have to go every 3 mos. to get the pump refilled. A round flat piece of plastic the size of the pump is layed over top of the pump with a tiny hole cut out where the dr. puts the needle in to refill the pump. They say it is a painless procedure & for me it will be since prior abdominal surgery left a big portion of my stomach with no feeling. The med dozage can be reprogamed thru a remote control the dr. has if you are not getting enough or getting too much. It should only take a few visits to get your dozage at the right amt. & from there it stays the same since you don't build a tolerance when meds are injected directly into your spine vs. meds that travel thru your bloodstream & across your brain by taking pills.
I am thrilled that I was able to get the pump implant & would do it again w/out any hestiation. I will post an update every month for a couple months to let you know how successful the pump is for me. My dr. said all his patients with one absolutely love it and it works great for them. I want to mention that from the literature I read on the pump, over 25,000 people are now using one & I would encourage anyone who has tried other remedies that don't work to look into getting a pump.
On Friday I had my surgery to implant a medine pump in my stomach that injects a small amt. of MS Contin (1 mg per day on a continuous basis) directly into my spine thru a catheter attached to the pump which is inserted under my skin & goes around my side to my spine. The surgery took about 1 to 1 1/2 hrs. and I was kept in ICU for about 15 hrs. before being moved to a regular room. When they woke me up in ICU, I was in bad pain because they don't give any pain meds until they wake you up. I then rec'd demerol directly into the IV in my wrist & I had instant complete pain relief. I ran into problems though when they next switched to giving me 4 mg of morphine for pain instead of more Demerol. When the morphine wore off, I started to have a headache & asked the nurse if I was getting what is called a rebound headache because my body was craving more morphine (I didn't get any answer to my question), instead they gave me 6 mg of morphine. When they went to move me to my regular room 3 hrs. later, I got extremely dizzy on the ride there & when I had to sit up to move from the bed I travled in to the bed in the new room, my head was spinning & splitting open so bad I threw up. I ended up throwing up all day because I had too much morphine in my system. I had the same reaction when I had surgery 10 years ago & I had a morphine pump. I had to stay in the hospital an extra day so they could flush the drug out of my system thru the IV bag. During that time, I could have no more pain meds for my incisions, so as long as I laid still & did not move, I had no pain. The next day, they gave me 2 Vicodin & I have felt fantastic ever since getting a prescription for those.
Let me say at this point that the day I went to get the surgery, my Fibro pain was so bad, that I almost asked for a wheelchair when I got to the admitting dept. After the surgery, I have had no Fibro pain whatsoever because the pump has been working since it was implanted. I plan to return to work tomorrow (Tues.) because I feel so good. I just have to be careful not to lift, pull or push anything heavy for 6 weeks so that I can heal properly. I have a desk job that involves typing & other administrative duties so I should have no problems going back to work. My incision on my stomach is longer than I think was really necessary - 4 inches. I read a post from another person with an implant & their incision was only 2 1/2 inches. The incision along my spine is 2 inches. The dr. used metal staples which come out next Tues. & I already know that their removal will be a painful pinch for each one since I have had metal staples for another surgery once before - but it is a small price to pay for no longer having to be in pain on a daily basis. Since I do not have that much morphine being pumped into my spine on a daily basis, I only have to go every 3 mos. to get the pump refilled. A round flat piece of plastic the size of the pump is layed over top of the pump with a tiny hole cut out where the dr. puts the needle in to refill the pump. They say it is a painless procedure & for me it will be since prior abdominal surgery left a big portion of my stomach with no feeling. The med dozage can be reprogamed thru a remote control the dr. has if you are not getting enough or getting too much. It should only take a few visits to get your dozage at the right amt. & from there it stays the same since you don't build a tolerance when meds are injected directly into your spine vs. meds that travel thru your bloodstream & across your brain by taking pills.
I am thrilled that I was able to get the pump implant & would do it again w/out any hestiation. I will post an update every month for a couple months to let you know how successful the pump is for me. My dr. said all his patients with one absolutely love it and it works great for them. I want to mention that from the literature I read on the pump, over 25,000 people are now using one & I would encourage anyone who has tried other remedies that don't work to look into getting a pump.
Sponsor
korken
02-04-2002, 06:02 PM
PP, That is great http://www.healthboards.com/ubb/bang.gif
Al, if you read this maybe this would help you to.
We are going to the docs this week to see if Gary couldbe a candidate. They arn't to reasuring thought due to all the problems he has in his spine. But, our fingures are crossed. We have to go to a Pain clinic at a cancer center.
Can't wait for your updates http://www.healthboards.com/ubb/t_up.gif
------------------
Take care ~Kim & Gary~
Al, if you read this maybe this would help you to.
We are going to the docs this week to see if Gary couldbe a candidate. They arn't to reasuring thought due to all the problems he has in his spine. But, our fingures are crossed. We have to go to a Pain clinic at a cancer center.
Can't wait for your updates http://www.healthboards.com/ubb/t_up.gif
------------------
Take care ~Kim & Gary~
pixiepoodle
02-04-2002, 09:52 PM
Kim,
I hope that Gary is a good candidate for the pain pump & that he will not be afraid to have it implanted. Let me know how the visit goes with his dr. this week.
I don't know how hard it would be for others to find a pain mgmt. specialist who implants them. I think some ins. progams won't allow people to go to a specialist without a referral and their dr. won't give them one. My ins. plan lets me go to any dr. I want that is listed in our provider list no matter what type of dr. they are (which is considered "in-network"). If I go to a dr. not on the list ("out-of-network"), then I have to pay a much bigger portion of my bill & I have to pay everything up front instead of only my portion owed at the backend after the ins. co. pays their portion.
As I said in my first update after the surgery, all my Fibro pain is gone. Something I didn't mention is that I also have a rotator cuff injury on my right shoulder from a fall I had at work in July. I will being having surgery on that in March/April. Between the pump and the Vicodin I am taking for my 2 incisions, the pain in my shoulder will not go away. It's weird how njecting morphine straight into my spine eliminates the muscle/joint/skeletal pain of FMS, but not my incision or shoulder pain.
If anyone from Houston is interested in checking out this surgery, I will be happy to give you my dr's name & no. if you email me at ******Even if he is not on your provider list, he may know other drs. in his field who also implants the pumps who might be on your list.
Please do not post your emails
[This message has been edited by Skeetercatt (edited 08-15-2002).]
I hope that Gary is a good candidate for the pain pump & that he will not be afraid to have it implanted. Let me know how the visit goes with his dr. this week.
I don't know how hard it would be for others to find a pain mgmt. specialist who implants them. I think some ins. progams won't allow people to go to a specialist without a referral and their dr. won't give them one. My ins. plan lets me go to any dr. I want that is listed in our provider list no matter what type of dr. they are (which is considered "in-network"). If I go to a dr. not on the list ("out-of-network"), then I have to pay a much bigger portion of my bill & I have to pay everything up front instead of only my portion owed at the backend after the ins. co. pays their portion.
As I said in my first update after the surgery, all my Fibro pain is gone. Something I didn't mention is that I also have a rotator cuff injury on my right shoulder from a fall I had at work in July. I will being having surgery on that in March/April. Between the pump and the Vicodin I am taking for my 2 incisions, the pain in my shoulder will not go away. It's weird how njecting morphine straight into my spine eliminates the muscle/joint/skeletal pain of FMS, but not my incision or shoulder pain.
If anyone from Houston is interested in checking out this surgery, I will be happy to give you my dr's name & no. if you email me at ******Even if he is not on your provider list, he may know other drs. in his field who also implants the pumps who might be on your list.
Please do not post your emails
[This message has been edited by Skeetercatt (edited 08-15-2002).]
korken
02-23-2002, 10:39 PM
PP,
Gary had an epidural block a few days ago. The doctors didn't give him much hope that this would help and almost didn't do it right at the time it was tobe done. He is so upset that it didn't work. Is that the first step you went through or was it something else?
He has seen 3 doctors in the past 2 weeks and another this coming week. His pain is so hard to get under control. We talked to all about the pump and they wern't sure.
Hope all is doing great for you.
------------------
Take care ~Kim & Gary~
Gary had an epidural block a few days ago. The doctors didn't give him much hope that this would help and almost didn't do it right at the time it was tobe done. He is so upset that it didn't work. Is that the first step you went through or was it something else?
He has seen 3 doctors in the past 2 weeks and another this coming week. His pain is so hard to get under control. We talked to all about the pump and they wern't sure.
Hope all is doing great for you.
------------------
Take care ~Kim & Gary~
pixiepoodle
02-28-2002, 02:24 PM
Kim,
Sorry I haven't checked the board for a few days or I would have replied sooner. I'm not sure if the block Gary had would have had a similar result as my test since they injected directly into his spine for his block. All my test involved was injecting 1 mg. of morphine directly into my spine in the middle. The results were instantaneous. I'm not sure where they directed the needle to hit once in his spine (nerves vs. something else in there) and what area of his body they were attempting to block pain from. You mentioned his drs. weren't sure about the pump. Is that because they don't know much about it and have never done one? If you call the mgf. of the pump (Medtronic) at 1-800-510-6735, they can give you a list of drs. names in your area that use their product. If I ever moved away from Houston, I would have to call them to find a dr. and/or clinic that installs them so they could do refills of my meds. The drs. who install them have to have a computer supplied by the mfr. to operates the pump to adjust the dozage and they need the plastic template that lays on top of the implanted pump to guide the needle in to refill the pump.
I do want to tell you that on my 1st followup visit to get my staples out, I asked the dr. how much the pumpl costs since he never mentioned a price. He said it was around $10,000. Imagine my shock when I got my explanation of benefits from my ins. showing it cost $20,140. I was absolutely floored. That is only the price of the pump, not to mentioned the cost for the 2 drs. who operated (1 does the stomach surgergy and 1 does the spinal surgery), the anthestiologist, ICU room, meds, OR charge, etc. Also, the for the test, I was in ICU overnight and there was a dr. fee of $525. So for anyone who doesn't have good ins. or isn't super wealthy, the pump may be totally out of the question. The only good thing I found out related to costs is that I have the lastest model pump that lasts 5-7 yrs. before being replaced instead of the old one which had a lifespan of 3-5 yrs. I asked why they couldn't replace the battery and I was told that the pump is made of titanium steel that is completely sealed because if my body fluids were ever to seep into the pump the battery would get corroded and then the corrosion would in turn, leak into my blood stream and kill me - so that made good sense to me. I was also told that they are working on a rechargable model (which I'm sure will cost a lot more) and I am hoping when the battery in my 1st pump goes, I will be able to get one of those.
I am feeling good with the pump so far and as I am taking less pain meds for my incision pain and can feel some Fibro pain still, they have adjusted my dosage up twice. The 1st time it went from 1 mg. to a whopping 1.15 mg and the 2nd time (yesterday) to a whopping 1.30 mg. I told him during the test that although 1 mg. took away most of my pain, that I felt I would need a tad more than that. I could feel the difference immediately yesterday when he increased the dosage, but my gut tells me that I will probably need about 2 mg. It is standard for them to increase dosages from .15 to 20 mgs., but I think it should be more along the line of a .50 (1/2) mg. Other than a small area of soreness and stiffness by both incisions, I am getting around great and everyone comments on how great and how alert I look and sound. I had to laugh the 1st few times I heard that since I am still taking 2 Vicodin twice a day for incision pain.
Sorry I haven't checked the board for a few days or I would have replied sooner. I'm not sure if the block Gary had would have had a similar result as my test since they injected directly into his spine for his block. All my test involved was injecting 1 mg. of morphine directly into my spine in the middle. The results were instantaneous. I'm not sure where they directed the needle to hit once in his spine (nerves vs. something else in there) and what area of his body they were attempting to block pain from. You mentioned his drs. weren't sure about the pump. Is that because they don't know much about it and have never done one? If you call the mgf. of the pump (Medtronic) at 1-800-510-6735, they can give you a list of drs. names in your area that use their product. If I ever moved away from Houston, I would have to call them to find a dr. and/or clinic that installs them so they could do refills of my meds. The drs. who install them have to have a computer supplied by the mfr. to operates the pump to adjust the dozage and they need the plastic template that lays on top of the implanted pump to guide the needle in to refill the pump.
I do want to tell you that on my 1st followup visit to get my staples out, I asked the dr. how much the pumpl costs since he never mentioned a price. He said it was around $10,000. Imagine my shock when I got my explanation of benefits from my ins. showing it cost $20,140. I was absolutely floored. That is only the price of the pump, not to mentioned the cost for the 2 drs. who operated (1 does the stomach surgergy and 1 does the spinal surgery), the anthestiologist, ICU room, meds, OR charge, etc. Also, the for the test, I was in ICU overnight and there was a dr. fee of $525. So for anyone who doesn't have good ins. or isn't super wealthy, the pump may be totally out of the question. The only good thing I found out related to costs is that I have the lastest model pump that lasts 5-7 yrs. before being replaced instead of the old one which had a lifespan of 3-5 yrs. I asked why they couldn't replace the battery and I was told that the pump is made of titanium steel that is completely sealed because if my body fluids were ever to seep into the pump the battery would get corroded and then the corrosion would in turn, leak into my blood stream and kill me - so that made good sense to me. I was also told that they are working on a rechargable model (which I'm sure will cost a lot more) and I am hoping when the battery in my 1st pump goes, I will be able to get one of those.
I am feeling good with the pump so far and as I am taking less pain meds for my incision pain and can feel some Fibro pain still, they have adjusted my dosage up twice. The 1st time it went from 1 mg. to a whopping 1.15 mg and the 2nd time (yesterday) to a whopping 1.30 mg. I told him during the test that although 1 mg. took away most of my pain, that I felt I would need a tad more than that. I could feel the difference immediately yesterday when he increased the dosage, but my gut tells me that I will probably need about 2 mg. It is standard for them to increase dosages from .15 to 20 mgs., but I think it should be more along the line of a .50 (1/2) mg. Other than a small area of soreness and stiffness by both incisions, I am getting around great and everyone comments on how great and how alert I look and sound. I had to laugh the 1st few times I heard that since I am still taking 2 Vicodin twice a day for incision pain.
korken
02-28-2002, 05:16 PM
PP,
That sounds great. He was blocked at L5,S1. It didn't work at all. The doctors were pesamistick. But we thought it was worth a go.
We did find a hospital that does the pump. It's an hour away so not close enough yet. We don't do well in a car for more then 30 mins. then it is very uncomfortable and the spasums unbarable for me. The doctor wan't the neurosurgion to see us about the pump.
------------------
Take care ~Kim & Gary~
That sounds great. He was blocked at L5,S1. It didn't work at all. The doctors were pesamistick. But we thought it was worth a go.
We did find a hospital that does the pump. It's an hour away so not close enough yet. We don't do well in a car for more then 30 mins. then it is very uncomfortable and the spasums unbarable for me. The doctor wan't the neurosurgion to see us about the pump.
------------------
Take care ~Kim & Gary~
pixiepoodle
03-01-2002, 02:59 PM
Kim,
It sounds like you could use the pump too. I had the same problem with long trips. I could only make it sitting up between 1 to 2 hrs. depending on how good I felt before getting in the car. We bought a Suburban so I can lay down in the seat behind my husband while he drives. I tell him he is my chauffer. He misses my company in the front seat but I try to make up for it by yakking my head off when I'm not sleeping. I'm still not up to a long trip yet, but hopefully will be in the very near future. I couldn't understand the last sentence of your post because of the word "wan't" make it hard to understand the meaning of the sentence. I took it to means "wants", indicating the dr. is in favor of the pump. I don't know anything about the letters & nos. relating to the spine so you will have to trust your dr. about if the pump is worth getting.
I am tenatively scheduled to get rotator cuff surgery on my right shoulder (I am right-handed) on 3/19 or 3/20). My surgeon told me "You know this surgery will probably get your Fibro started back up" and I told him I think you're forgetting the purpose of the pump I just got is to rid me of that pain. All Fibro patients would either get a kick out of this dr.'s knowledge of Fibro or want to slap him. He is very set in his "ignorance" as he thinks you get Fibro from lack of exercise. In that case 50 times or more of the people would have it since so many have never exercised in their life or in years. I told him I found out I had it when after 4 yrs of walking on a treadmill, in addition to always doing some form exercise over the years, that I can to a dead halt within one mo. of the onset of horrible pain. He never listened to what I had to say because he has a preconceived notion of what it is. If you wonder why I would want him to operate on my shoulder after hearing his opinion its because he's an expert in his field of orthopedics and knows a tremendous amount about rotator cuffs (I read everything I could on it and he was surprised at the amt. of knowledge I had so he talked to me in very complicated medical jaron about the condition of my shoulder). I think I mentioned before that I injured my shoulder when I had a very bad fall at work back in July. I just found out at my appt. yesterday when he went over my xrays that my shoulder bone got cracked in the fall and there's nothing he can do for it. I imagine if I fell again, it might get worse or completely break and that point something would be done. I feel blessed that I didn't break my collar bone when I fell. I guess I will have to keep you posted how my surgery goes and if it does cause my Fibro to "act up".
It sounds like you could use the pump too. I had the same problem with long trips. I could only make it sitting up between 1 to 2 hrs. depending on how good I felt before getting in the car. We bought a Suburban so I can lay down in the seat behind my husband while he drives. I tell him he is my chauffer. He misses my company in the front seat but I try to make up for it by yakking my head off when I'm not sleeping. I'm still not up to a long trip yet, but hopefully will be in the very near future. I couldn't understand the last sentence of your post because of the word "wan't" make it hard to understand the meaning of the sentence. I took it to means "wants", indicating the dr. is in favor of the pump. I don't know anything about the letters & nos. relating to the spine so you will have to trust your dr. about if the pump is worth getting.
I am tenatively scheduled to get rotator cuff surgery on my right shoulder (I am right-handed) on 3/19 or 3/20). My surgeon told me "You know this surgery will probably get your Fibro started back up" and I told him I think you're forgetting the purpose of the pump I just got is to rid me of that pain. All Fibro patients would either get a kick out of this dr.'s knowledge of Fibro or want to slap him. He is very set in his "ignorance" as he thinks you get Fibro from lack of exercise. In that case 50 times or more of the people would have it since so many have never exercised in their life or in years. I told him I found out I had it when after 4 yrs of walking on a treadmill, in addition to always doing some form exercise over the years, that I can to a dead halt within one mo. of the onset of horrible pain. He never listened to what I had to say because he has a preconceived notion of what it is. If you wonder why I would want him to operate on my shoulder after hearing his opinion its because he's an expert in his field of orthopedics and knows a tremendous amount about rotator cuffs (I read everything I could on it and he was surprised at the amt. of knowledge I had so he talked to me in very complicated medical jaron about the condition of my shoulder). I think I mentioned before that I injured my shoulder when I had a very bad fall at work back in July. I just found out at my appt. yesterday when he went over my xrays that my shoulder bone got cracked in the fall and there's nothing he can do for it. I imagine if I fell again, it might get worse or completely break and that point something would be done. I feel blessed that I didn't break my collar bone when I fell. I guess I will have to keep you posted how my surgery goes and if it does cause my Fibro to "act up".
korken
05-13-2002, 12:52 AM
PP,
How are you doing?
We just went to our old pm doc on Friday and he said that the pump would be of help to Gary. He said that he knows that Gary is scared of needles so when he max's out on the oxy. That the pump would be the next step. The doc said he does the filling for the morophine on the pump. So that is good. He also told Gary that it is his belief that Gary is inoperable. He said that even though we were told that he would need future surgeries that they would not releave his pain just some of the other symtoms like weakness, numbness and the migrain associated with the cervical part.
Hope all is well.
------------------
Take care ~Kim & Gary~
How are you doing?
We just went to our old pm doc on Friday and he said that the pump would be of help to Gary. He said that he knows that Gary is scared of needles so when he max's out on the oxy. That the pump would be the next step. The doc said he does the filling for the morophine on the pump. So that is good. He also told Gary that it is his belief that Gary is inoperable. He said that even though we were told that he would need future surgeries that they would not releave his pain just some of the other symtoms like weakness, numbness and the migrain associated with the cervical part.
Hope all is well.
------------------
Take care ~Kim & Gary~
pixiepoodle
05-30-2002, 11:57 PM
Hi Kim,
Sorry it has taken me sooooooo long to reply to you. I have had a busy few mos. recovering from surgery for my torn rotator cuff and then after going back to work (this is my 3rd week back), I am so exhausted every night that I'm even too tired to fix something simple for dinner so I usually do fast food. Since I had 2 major surgeries recently (pump on 2/1 and shoulder on 3/19), it will probably take me a good 6 mos. to get my full energy level back (as if I ever had one with Fibro).
Now, as far as the pump goes, it has decreased my Fibro pain at least 95% - 100% most of the time. Now as wonderful as that sounds, I found out the hard way I can't go do physical things that normally my Fibro would not allow me to do or I end up paying with bad pain because although I feel great, I am in bad physical shape from not doing much the last 6 yrs. As way of example, I decided to prune my crepe myrtle trees and rose bushes on 2/15. I worked a little over an hr. and the next day, I had pain shooting down both arms and my fingers were all numb. I can't tell you how many visits from mid-Feb until the end of Apr. I made to the chiropactor because I caused 2 vertebrae in my lower neck to pinch together. So now I know I must pace myself and slowly build my muscles back up.
The only complication I've had with the pump is that the 2nd day after surgery, my feet swelled up. That happened once before when I had surgery and after taking water pills, it went away. This time the swelling remained and when my dosage was upped, my fingers swelled also and I could no longer hold a pen to write. The pain dr. insisted it wasn't the morphine and told me to have my circulation checked out. Long story short, I had extensive blood work done, a CAT scan and a chest xray - all of which showed I am perfectly normal. After going back to the dr. and telling him it had to be the morphine, he checked with the manufacturer and sure enough it happened to another woman, so he switched the morphine out with fentanyl yesterday, but the dr. said the morphine in the catherer doesn't come out and would take 4 days to be used up before the fentanyl would kick in. The dose he gave me is identical in strength to the morphine I've been getting, so I should not feel any better/worse - I just won't have the swelling any more. Apparently morphine has a tendency to cause your brain to release hystimine, which causes fluid retention. Even though they claim by using the pump, the drug bypasses your bloodstream and brain, if you think about it, it has to drain somewhere into your body so it can eventually be passed out thru your urine.
Anyway, I absolutely love my pump and wish everyone could have one. However, there have been some who had problems with the pump malfunctioning and their dr. not believing that was the problem or getting an infection. As you know it is very expensive to have one implanted and I don't know how hard it would be for someone on medicaid/medicare to get approval to get one. I only had my pump refilled once so far and just got a copy of what my ins. paid and I could not believe it was $925 (for 3 mos. worth of morphine). With me having an HHPO, it was discounted down to $723. I was charged for an office visit, the lidocaine to numb my stomach, the refill kit (containing a pair of rubber gloves, some sterile gauze, a syringe and a needle with a catherer attached), a full vial of morphine (that was $600 alone), and the process of doing was considered surgery.
Sorry this is so long, but since Gary is a candidate and could possibly get one, you need to know this info up front, especially about the cost of having it refilled. No one told me what the cost would be for the surgery, the pump or to refill the pump.
Sorry it has taken me sooooooo long to reply to you. I have had a busy few mos. recovering from surgery for my torn rotator cuff and then after going back to work (this is my 3rd week back), I am so exhausted every night that I'm even too tired to fix something simple for dinner so I usually do fast food. Since I had 2 major surgeries recently (pump on 2/1 and shoulder on 3/19), it will probably take me a good 6 mos. to get my full energy level back (as if I ever had one with Fibro).
Now, as far as the pump goes, it has decreased my Fibro pain at least 95% - 100% most of the time. Now as wonderful as that sounds, I found out the hard way I can't go do physical things that normally my Fibro would not allow me to do or I end up paying with bad pain because although I feel great, I am in bad physical shape from not doing much the last 6 yrs. As way of example, I decided to prune my crepe myrtle trees and rose bushes on 2/15. I worked a little over an hr. and the next day, I had pain shooting down both arms and my fingers were all numb. I can't tell you how many visits from mid-Feb until the end of Apr. I made to the chiropactor because I caused 2 vertebrae in my lower neck to pinch together. So now I know I must pace myself and slowly build my muscles back up.
The only complication I've had with the pump is that the 2nd day after surgery, my feet swelled up. That happened once before when I had surgery and after taking water pills, it went away. This time the swelling remained and when my dosage was upped, my fingers swelled also and I could no longer hold a pen to write. The pain dr. insisted it wasn't the morphine and told me to have my circulation checked out. Long story short, I had extensive blood work done, a CAT scan and a chest xray - all of which showed I am perfectly normal. After going back to the dr. and telling him it had to be the morphine, he checked with the manufacturer and sure enough it happened to another woman, so he switched the morphine out with fentanyl yesterday, but the dr. said the morphine in the catherer doesn't come out and would take 4 days to be used up before the fentanyl would kick in. The dose he gave me is identical in strength to the morphine I've been getting, so I should not feel any better/worse - I just won't have the swelling any more. Apparently morphine has a tendency to cause your brain to release hystimine, which causes fluid retention. Even though they claim by using the pump, the drug bypasses your bloodstream and brain, if you think about it, it has to drain somewhere into your body so it can eventually be passed out thru your urine.
Anyway, I absolutely love my pump and wish everyone could have one. However, there have been some who had problems with the pump malfunctioning and their dr. not believing that was the problem or getting an infection. As you know it is very expensive to have one implanted and I don't know how hard it would be for someone on medicaid/medicare to get approval to get one. I only had my pump refilled once so far and just got a copy of what my ins. paid and I could not believe it was $925 (for 3 mos. worth of morphine). With me having an HHPO, it was discounted down to $723. I was charged for an office visit, the lidocaine to numb my stomach, the refill kit (containing a pair of rubber gloves, some sterile gauze, a syringe and a needle with a catherer attached), a full vial of morphine (that was $600 alone), and the process of doing was considered surgery.
Sorry this is so long, but since Gary is a candidate and could possibly get one, you need to know this info up front, especially about the cost of having it refilled. No one told me what the cost would be for the surgery, the pump or to refill the pump.
korken
05-31-2002, 12:45 AM
PP, Hope you are feeling better soon. I hate that surgery always takes a bit longer in the healing prosess for us Fibromites.
I love my garden and haven't been able to even complete the mulching yet. I get 2 bags every other day laied and then the pain and fatigue. I have started to feel better in the pain part but, the fatgue is killing me. Gary is in so much pain and the pain doc was supose to get back to our FMS doc to increase and how much. That was 3 weeks ago and he went on a 2 weeks vaca. He would be the one with the pump. Our doc doesn't do that. Then the day after seeing the PM doc Gary fell on the basement concret floor. He wanted to help by taking a load from the dryer and fell. Now the pain is even worse and the numbness, pain is so bad going down to this toes. He didn't want to call the doc and forgot to tell the FMS doc he fell yet. Well his sugeon just left the country (so he can't see him) to see his Mom who is dieing in India. My friend was supose to have him do her surgery on the 3rd but, has to wait till the 19th. Now, she is upset that he could be killed by war over there.
Thank you for the info. Very good to know. We are hoping to keep our old insurance. It's expensive but, we must have it. I would rather starve(at least I'd be thin) then go w/o it.
Let us know how the Fentanyl works out. I am allergic to it. Found that out with surgery last year.
That pump sounds sooo goooood. Does it also take care of head aches? Gary is just so missrable I can't get him to read or post any more.
The disability forms he just doesn't do. I have to. He doesn't seem to care about bathing or gromming. I have to force him and it doesn't always work. I understand that he has lost the life he knew and that he must go through the stages but, I have really thought about having him go in for a phyc eval for a few days. The problem is his pain meds they won't give him what he takes at the hospitals near us and if he goes to the hospital the FMS doc works at we have to drive an hour to get there and well, he wants tobe close to home. UGH!!!
Well, as I said my friend is supose to have surgery at that hospital our doc works at so maybe he can go in then. I will be with her the day of surgery and then to pick her up a couple days later. I have to have our older son watch Gary and Patrick.His family won't be able to help. My sister in law had a baby boy last night. C-section and his Mom will be helping her and she too has Dystonia and other problems.
Sorry, to down load.
Hope your energy level comes back soon and that you are feeling much better. :D:
------------------
Take care ~Kim & Gary~
I love my garden and haven't been able to even complete the mulching yet. I get 2 bags every other day laied and then the pain and fatigue. I have started to feel better in the pain part but, the fatgue is killing me. Gary is in so much pain and the pain doc was supose to get back to our FMS doc to increase and how much. That was 3 weeks ago and he went on a 2 weeks vaca. He would be the one with the pump. Our doc doesn't do that. Then the day after seeing the PM doc Gary fell on the basement concret floor. He wanted to help by taking a load from the dryer and fell. Now the pain is even worse and the numbness, pain is so bad going down to this toes. He didn't want to call the doc and forgot to tell the FMS doc he fell yet. Well his sugeon just left the country (so he can't see him) to see his Mom who is dieing in India. My friend was supose to have him do her surgery on the 3rd but, has to wait till the 19th. Now, she is upset that he could be killed by war over there.
Thank you for the info. Very good to know. We are hoping to keep our old insurance. It's expensive but, we must have it. I would rather starve(at least I'd be thin) then go w/o it.
Let us know how the Fentanyl works out. I am allergic to it. Found that out with surgery last year.
That pump sounds sooo goooood. Does it also take care of head aches? Gary is just so missrable I can't get him to read or post any more.
The disability forms he just doesn't do. I have to. He doesn't seem to care about bathing or gromming. I have to force him and it doesn't always work. I understand that he has lost the life he knew and that he must go through the stages but, I have really thought about having him go in for a phyc eval for a few days. The problem is his pain meds they won't give him what he takes at the hospitals near us and if he goes to the hospital the FMS doc works at we have to drive an hour to get there and well, he wants tobe close to home. UGH!!!
Well, as I said my friend is supose to have surgery at that hospital our doc works at so maybe he can go in then. I will be with her the day of surgery and then to pick her up a couple days later. I have to have our older son watch Gary and Patrick.His family won't be able to help. My sister in law had a baby boy last night. C-section and his Mom will be helping her and she too has Dystonia and other problems.
Sorry, to down load.
Hope your energy level comes back soon and that you are feeling much better. :D:
------------------
Take care ~Kim & Gary~
pixiepoodle
06-04-2002, 10:06 PM
Dear Kim,
I am so sorry to hear that Gary had a fall (just
what he needs, another setback) and is not coping well with his day-to-day existence. I pray he can get the pump and that he does extremely well with it. I don't know if the pump will help with headaches or not. He may have to take separate meds for that. The idea behind the pump is to keep the dosage as low as
possible to control your pain and it might be strong
enough for his other aches and pains, but not his headaches. When I had my rotator surgery, many people asked me why they couldn't just turn my pump up so I wouldn't have to take pain meds. Well, they would have had to turn it way up and then if it was turned back down again, it probably wouldn't help my Fibro
pain anymore. Also, I think that if you didn't
gradually adjust your dosage up, you might have a serious problem with urine retention. When I first got the pump, I not iced that I could barely use my muscles when going. After a couple of days, I strengthened them enough thru concentration and use
and then I felt back to normal.
I did great with the Fentanyl, I never felt when the Morphine stopped and the Fentanyl kicked in. My swelling went away within one day and its like I never had Fibro. My heart aches for all those out there who are still in chronic pain. I hope I never have problems that prevent me from using my pump, it would be very hard and depressing to go back to chronic pain.
Keep me posted how it goes for Gary. I probably won't check in that often since I am now back at work full time and I am so busy after I get home every night.
I am so sorry to hear that Gary had a fall (just
what he needs, another setback) and is not coping well with his day-to-day existence. I pray he can get the pump and that he does extremely well with it. I don't know if the pump will help with headaches or not. He may have to take separate meds for that. The idea behind the pump is to keep the dosage as low as
possible to control your pain and it might be strong
enough for his other aches and pains, but not his headaches. When I had my rotator surgery, many people asked me why they couldn't just turn my pump up so I wouldn't have to take pain meds. Well, they would have had to turn it way up and then if it was turned back down again, it probably wouldn't help my Fibro
pain anymore. Also, I think that if you didn't
gradually adjust your dosage up, you might have a serious problem with urine retention. When I first got the pump, I not iced that I could barely use my muscles when going. After a couple of days, I strengthened them enough thru concentration and use
and then I felt back to normal.
I did great with the Fentanyl, I never felt when the Morphine stopped and the Fentanyl kicked in. My swelling went away within one day and its like I never had Fibro. My heart aches for all those out there who are still in chronic pain. I hope I never have problems that prevent me from using my pump, it would be very hard and depressing to go back to chronic pain.
Keep me posted how it goes for Gary. I probably won't check in that often since I am now back at work full time and I am so busy after I get home every night.
korken
06-05-2002, 12:22 AM
PP,
Anytime http://www.healthboards.com/ubb/bang.gif
I am so happy that you are feeling so much less pain. Keep us updated now and then and take good care of yourself.
------------------
Take care ~Kim & Gary~
Anytime http://www.healthboards.com/ubb/bang.gif
I am so happy that you are feeling so much less pain. Keep us updated now and then and take good care of yourself.
------------------
Take care ~Kim & Gary~
Copper
06-11-2002, 07:31 PM
Hi PP & Kim,
POOR GARY! I'm so sorry to hear he's having such a hard time!
I just read an article this past Sunday, in the SF Chronicle, about pain pumps. PP, you mentioned infections for some with pumps. This is what the article addressed.
It would seem that some dr.'s use 'compounding pharmacists' to mix the morphine for pain pumps. Apparently, because the pharmacists are buying the morphine powder in bulk, and then mixing it with other medications, this is causing the problems.
The infections are occurring at the site where the opening to the spine is. The article claimed that some of the meds used in the compounding are causing this, and also that the morphine is not sterile, and neither is the compounding area. The claim is that airbourne bacteria and fungus are then being introduced into the body. Why the infection accumulated at this site is still unclear, but it builds up, apparently causing pressure on the spinal chord itself, and can lead to partial, even complete, paralysis, which MAY be permanent! The recommendation was to be sure your dr. is not obtaining your refills from a compounding pharmacist, and is, instead, using pure and sterile morphine.
Great to hear your pump is working so well, PP! I hope some of this info helps to keep it working well for you. Kim, my prayers are out there for both you and Gary to find some relief soon!
Take care,
------------------
Copper
Let Miracles Replace all Grievances
POOR GARY! I'm so sorry to hear he's having such a hard time!
I just read an article this past Sunday, in the SF Chronicle, about pain pumps. PP, you mentioned infections for some with pumps. This is what the article addressed.
It would seem that some dr.'s use 'compounding pharmacists' to mix the morphine for pain pumps. Apparently, because the pharmacists are buying the morphine powder in bulk, and then mixing it with other medications, this is causing the problems.
The infections are occurring at the site where the opening to the spine is. The article claimed that some of the meds used in the compounding are causing this, and also that the morphine is not sterile, and neither is the compounding area. The claim is that airbourne bacteria and fungus are then being introduced into the body. Why the infection accumulated at this site is still unclear, but it builds up, apparently causing pressure on the spinal chord itself, and can lead to partial, even complete, paralysis, which MAY be permanent! The recommendation was to be sure your dr. is not obtaining your refills from a compounding pharmacist, and is, instead, using pure and sterile morphine.
Great to hear your pump is working so well, PP! I hope some of this info helps to keep it working well for you. Kim, my prayers are out there for both you and Gary to find some relief soon!
Take care,
------------------
Copper
Let Miracles Replace all Grievances
korken
06-11-2002, 11:49 PM
Thank you two for the well wishes it means alot to us. Gary will be seeing a neurologist wed and having some cardiac things checked to.
I think it is the hypoglysemia we FMSERs can have. Not diabeties. Doctor checked that one. I looked up they symtoms list on the doctors list at co cure. Stae Ohio Under Dr Starlayl is doctor Starlayl he has the best symtoms list I have seen Everyone should read it.
------------------
Take care ~Kim & Gary~
I think it is the hypoglysemia we FMSERs can have. Not diabeties. Doctor checked that one. I looked up they symtoms list on the doctors list at co cure. Stae Ohio Under Dr Starlayl is doctor Starlayl he has the best symtoms list I have seen Everyone should read it.
------------------
Take care ~Kim & Gary~
Copper
06-13-2002, 03:52 PM
Hi, again. I forgot to add one fact (from the article). IT claimed that the number one reason dr's are using compounding pharmacists is....are you ready for this?....MONEY (oh, DUH!) It would seem that it only costs $5 of morphine to actually fill the pump. Insurance often (uaually) reimburses as much as $1800 to the doc for each refill!!!! By using the compunding, LESS morphine is used, as the profit is even HIGHER!
SHEESH! Isn't that a load of dung? It's nice to know that SOME dr's feel the profit is worth jeopardizing their patients' health! Anyway, thought you'd like to know the rest. Who said scruples belong in health care? :eek:
------------------
Copper
Let Miracles Replace all Grievances
SHEESH! Isn't that a load of dung? It's nice to know that SOME dr's feel the profit is worth jeopardizing their patients' health! Anyway, thought you'd like to know the rest. Who said scruples belong in health care? :eek:
------------------
Copper
Let Miracles Replace all Grievances
pixiepoodle
06-20-2002, 02:57 PM
Dear Copper,
I am now no longer using "morphine" in my pump. The
morphine they first put in my pump came from the hospital pharmacy where my drs'clinic is located. I am not using Fentanyl. My dr. told me he's been putting pumps in since 1983 and I am the first patient to have severe edema (swelling) in my extremities as a reaction to the morphine (actually there should be no reactions since its going into your spine and not your bloodstream). He is writing a case history about me to put in some kind of medical journal. I am doing great with the Fentanyl they replaced the morphine with and all swelling has disappeared. In fact, I have no Fibro pain anymore and feel like a normal person again. I just have to be careful not to overdo anything since I have been a semi-veggie for 6 yrs. and it will take a long time to build my leg and arm mucles back up.
I think overall, most pump patients have great success with the pump, and the complications some have experienced is far and few between. I was willing to take any risks to get rid of my pain - I could not imagine living the rest of my life like I have for the past 6 yrs. I hope what I have written will encourage others who have thought about the getting a pump to talk with a pain mgmt. dr. who implants them or check out the website for the manfacturer (do a search on infusion pumps - not sure if I can mention the website address).
I am now no longer using "morphine" in my pump. The
morphine they first put in my pump came from the hospital pharmacy where my drs'clinic is located. I am not using Fentanyl. My dr. told me he's been putting pumps in since 1983 and I am the first patient to have severe edema (swelling) in my extremities as a reaction to the morphine (actually there should be no reactions since its going into your spine and not your bloodstream). He is writing a case history about me to put in some kind of medical journal. I am doing great with the Fentanyl they replaced the morphine with and all swelling has disappeared. In fact, I have no Fibro pain anymore and feel like a normal person again. I just have to be careful not to overdo anything since I have been a semi-veggie for 6 yrs. and it will take a long time to build my leg and arm mucles back up.
I think overall, most pump patients have great success with the pump, and the complications some have experienced is far and few between. I was willing to take any risks to get rid of my pain - I could not imagine living the rest of my life like I have for the past 6 yrs. I hope what I have written will encourage others who have thought about the getting a pump to talk with a pain mgmt. dr. who implants them or check out the website for the manfacturer (do a search on infusion pumps - not sure if I can mention the website address).
helloitsme
08-09-2002, 11:49 AM
I'm glad the pump works so well for you. I have been using natural alternatives and have been feeling lots better. Pain meds have several bad side effects. I would be frightened to have that pump in my body what if I ever got in an accident or something and that injection to my spine? Ouch! But, I'm glad it works for you! http://www.healthboards.com/ubb/hammer.gif
pixiepoodle
08-14-2002, 03:09 PM
Hi Helloitsme,
I have been reading some of your posts on this msg. board re: natural alternatives. I have been faithfully taking many natural supplements for the last 6 years including those mentioned to aid Fibro and digestion and they have helped me have more energy, but make no difference in my pain level. The thing about Fibro is that its hard to narrow down what causes it and that it may be caused by more than one thing. Then there is the fact that you can take the same supplement or prescription drug and give it to a 100 people and some will have an adverse reaction, some will have positive results and others will have no results. So until science figures out the riddle of Fibro, it comes down to guessing and experimenting with what helps each person the most. The most success I have ever had with natural alternatives is finally getting rid of my menopausal symptoms by using soy isoflavones, black hohosh and chaste berry.
As for my pain pump, if the catherer becomes dislodged from being in a car accident or from some other reason, the pump stops working. There have been people in car accidents who have had it dislodge and they kept telling their dr. their pain was back and the pump had stopped working. One patient's dr. didn't believe him and finally after keeping on the dr. about it, went in surgically to find out, and sure enough, it dislodged and he reconnected it. I actualy feel completely safe with my pump, but never felt safe when driving my car when I was drugged up on lots of different meds. I feel so clear headed and functional now, I only wish I had the pump put in years earlier.
I have been reading some of your posts on this msg. board re: natural alternatives. I have been faithfully taking many natural supplements for the last 6 years including those mentioned to aid Fibro and digestion and they have helped me have more energy, but make no difference in my pain level. The thing about Fibro is that its hard to narrow down what causes it and that it may be caused by more than one thing. Then there is the fact that you can take the same supplement or prescription drug and give it to a 100 people and some will have an adverse reaction, some will have positive results and others will have no results. So until science figures out the riddle of Fibro, it comes down to guessing and experimenting with what helps each person the most. The most success I have ever had with natural alternatives is finally getting rid of my menopausal symptoms by using soy isoflavones, black hohosh and chaste berry.
As for my pain pump, if the catherer becomes dislodged from being in a car accident or from some other reason, the pump stops working. There have been people in car accidents who have had it dislodge and they kept telling their dr. their pain was back and the pump had stopped working. One patient's dr. didn't believe him and finally after keeping on the dr. about it, went in surgically to find out, and sure enough, it dislodged and he reconnected it. I actualy feel completely safe with my pump, but never felt safe when driving my car when I was drugged up on lots of different meds. I feel so clear headed and functional now, I only wish I had the pump put in years earlier.