pain pump still a work in progress

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river133
Posts: 260
Joined: Sun Sep 19, 2010 9:29 pm
Location: Melrose. Mn.

pain pump still a work in progress

Post by river133 »

We have been going to the clinc weekly for reprogramming of the pump. Yesterday they eliminated the fentinal because it was making me nauseous. .. So now I have 3 mg of morphine and and 10 of bupivicane. They did give me the PTM so I can administer to myself just twice a day to start with. The morphine is not making me nauseous and sweaty ,which is a great relief. As far as a decrease in pain,I am not noticing it , she said it is . a very slow process. I may notice I will be able to sit a bit longer
. I had a flair in my leg ,sciatica piriformis , with the nerve impingement. After 2 weeks it has settled down some. How horrible. . They assure me, it is their hope to get my pain level down to half. The medtronic ambassadors I have been speaking with tell me to hang on. Their experiences have been very positive There is always hope! ,it could take 6 months or more.
I spoke with a 75 year old women with the pump that said she was on the couch or her bed. Her husband built her a table so she could lie on her side to put puzzles together, She is now an active and busy person because of the pump.. Maybe by Xmas . :D

.
Surgery Jan.05 2011 TG with Dr Antalok. Dr.Chambi May of 2012 showed injury from a fall on back, 11 years ago. My piriformis muscle caused a large amount of fibrosis .My sciatic nerve was growing through the piriformis muscle which caused a bifid p.muscle. . Dr Chambi decompressed the sciatic,pudendal,pfcn ,and peroneal nerves. I hope to have a nuerostimulator put in to help with the sciatic pain that never goes away. Most days are better with the pudendal if I do not sit at all.
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Ray P.
Posts: 248
Joined: Mon Sep 20, 2010 5:22 pm

Re: pain pump still a work in progress

Post by Ray P. »

KEEP US UP TO DATE

THANKS
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stephanies
Posts: 681
Joined: Mon Oct 25, 2010 3:07 am

Re: pain pump still a work in progress

Post by stephanies »

Hoping for much less pain for you soon!
PN started 2004 from fall. Surgery with Filler Nov. 2006, Dr. Campbell April 2007. Pain decreased by 85% in 2008 (rectal and sitting pain resolved completely), pain returned in 12/13. Pain reduced significantly beginning around 11/23.
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river133
Posts: 260
Joined: Sun Sep 19, 2010 9:29 pm
Location: Melrose. Mn.

Re: pain pump still a work in progress

Post by river133 »

My pump has been filled weekly,just went in for a reprogramming today. I am at .17 bupivicane and 4 mg morphine. I am allowed to use the bolus up to 5 times a day.. my piriformus pain has been flaring horribly. I can barley stand for very long and I need to lye down. It is helping some. The cnp assured me today that Dr. Schultz has been doing this for 30 years,that I am early in the program. Said "do not give up". It certainly is not a quick fix,I know that someDr.s do things differently. I know of a medtronic ambassador that it took her 18 months . I asked her what her pain level was ,she said 5%.she us 75 and has had her pump since1998. I get discouraged at times,I feel some changes for the worse with the pain in my leg. The pudendalis not my main sourceof pain any longer. I still can not sit for very long,maybe 10 min. which is an improvement. The sciatic piriformus starts in my left buttock,sharp,knife like and down my leg and foot.. All I can do is hang in there and believe what people are telling me on the positive side, :D
Surgery Jan.05 2011 TG with Dr Antalok. Dr.Chambi May of 2012 showed injury from a fall on back, 11 years ago. My piriformis muscle caused a large amount of fibrosis .My sciatic nerve was growing through the piriformis muscle which caused a bifid p.muscle. . Dr Chambi decompressed the sciatic,pudendal,pfcn ,and peroneal nerves. I hope to have a nuerostimulator put in to help with the sciatic pain that never goes away. Most days are better with the pudendal if I do not sit at all.
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Violet M
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Joined: Mon Sep 06, 2010 6:04 am
Location: United States
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Re: pain pump still a work in progress

Post by Violet M »

Good luck, Ellie. I hope you start to see some improvements soon.

Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
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river133
Posts: 260
Joined: Sun Sep 19, 2010 9:29 pm
Location: Melrose. Mn.

Re: pain pump still a work in progress

Post by river133 »

Pain pump has been giving me about 40% relief this past 3 weeks.I am able to sit for a half hour with out repercussions. :D
I am at 5 mg of morphine and 17mcg of bupivicane ,they are increasing this gradually. I am not using the bolus near as often..
It is the 1st time in 8 years that I have had this much relief. My pain is not consuming me as it was in the past. No matter how much I tried for it not to. I still need the tens unit for the piriformus pain,and the gabapentin. The combination of it all is helping .
I go in on the 22nd for a refill. Because of the amount I have ,I need to go in for a refill every 39 days. I am able to be on my feet longer, I am feeling ALIVE. The nurse told me the last time I was in that perineum pain is very difficult to treat. . At least I am feeling some relief. I do not expect it all to go away,but I am hoping for 50%. Ellie
Surgery Jan.05 2011 TG with Dr Antalok. Dr.Chambi May of 2012 showed injury from a fall on back, 11 years ago. My piriformis muscle caused a large amount of fibrosis .My sciatic nerve was growing through the piriformis muscle which caused a bifid p.muscle. . Dr Chambi decompressed the sciatic,pudendal,pfcn ,and peroneal nerves. I hope to have a nuerostimulator put in to help with the sciatic pain that never goes away. Most days are better with the pudendal if I do not sit at all.
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river133
Posts: 260
Joined: Sun Sep 19, 2010 9:29 pm
Location: Melrose. Mn.

Re: pain pump still a work in progress

Post by river133 »

Pain pump has been giving me about 40% relief this past 3 weeks.I am able to sit for a half hour with out repercussions. :D
I am at 5 mg of morphine and 17mcg of bupivicane ,they are increasing this gradually. I am not using the bolus near as often..
It is the 1st time in 8 years that I have had this much relief. My pain is not consuming me as it was in the past. No matter how much I tried for it not to. I still need the tens unit for the piriformus pain,and the gabapentin. The combination of it all is helping .
I go in on the 22nd for a refill. Because of the amount I have ,I need to go in for a refill every 39 days. I am able to be on my feet longer, I am feeling ALIVE. The nurse told me the last time I was in that perineum pain is very difficult to treat. . At least I am feeling some relief. I do not expect it all to go away,but I am hoping for 50%. Ellie
Oh,they have me scheduled for a pelvic floor therapist on the 22nd. Do you really think at this point Violet,it will do any good?
Surgery Jan.05 2011 TG with Dr Antalok. Dr.Chambi May of 2012 showed injury from a fall on back, 11 years ago. My piriformis muscle caused a large amount of fibrosis .My sciatic nerve was growing through the piriformis muscle which caused a bifid p.muscle. . Dr Chambi decompressed the sciatic,pudendal,pfcn ,and peroneal nerves. I hope to have a nuerostimulator put in to help with the sciatic pain that never goes away. Most days are better with the pudendal if I do not sit at all.
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stephanies
Posts: 681
Joined: Mon Oct 25, 2010 3:07 am

Re: pain pump still a work in progress

Post by stephanies »

Great news, Ellie!
PN started 2004 from fall. Surgery with Filler Nov. 2006, Dr. Campbell April 2007. Pain decreased by 85% in 2008 (rectal and sitting pain resolved completely), pain returned in 12/13. Pain reduced significantly beginning around 11/23.
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janetm2
Posts: 987
Joined: Sun Jun 12, 2011 10:54 pm
Location: Maryland

Re: pain pump still a work in progress

Post by janetm2 »

Ellie,
So happy to hear you are finally getting some relief, hope it keeps getting better!
Janet
2007-08 pelvic muscles spasms treated by EGS. 6/27/10 sat too long on hard chair- spasms, EGS not work Botox help, cortisone shots in coccyx help, still pain, PT found PNE & sent me to Dr Marvel nerve blocks & MRN, TG left surgery 5/9/11. I have chronic bunion pain surgery at age 21. TG gave me back enough sitting to keep my job & join in some social activities. I wish the best to everyone! 2019 luck with orthotics from pedorthist & great PT allowing me to get off oxycodone.
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Violet M
Posts: 6570
Joined: Mon Sep 06, 2010 6:04 am
Location: United States
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Re: pain pump still a work in progress

Post by Violet M »

river133 wrote: Oh,they have me scheduled for a pelvic floor therapist on the 22nd. Do you really think at this point Violet,it will do any good?
I don't know Ellie but I can understand why you would be reluctant to do PT at this point. It almost seems like now that something is helping you wouldn't want to risk a setback. I'm very happy to hear how well you are doing now! ;)

Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
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