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lginfl 09-13-2012 11:29 AM

Fentanyl Withdrawal/Pain Pump-Removal
 
I've been searching these posts & can't find any answers for my situation.
Long story short, have pain pump & I'm at the ERI (remove or replace) time. Being that I'm sick of being attached to this pump, I've decided to wean off and have it removed. I've gone from 1.9ug/day to .385ug/day. Does ANYBODY OUT THERE KNOW at what point can you shut it down? I'm getting mixed signals from the Dr. I go to. From diluting the fentanyl-to using Seboxone or Clonodine. I've come so far & the withdrawals haven't been intolerable. When I tried talking to Medtronic, they can't give advice.
PLEASE NEED ADVICE!!! So sick of the runaround!

tortoisegirl 09-13-2012 07:53 PM

Re: Fentanyl Withdrawal/Pain Pump-Removal
 
Welcome! Sorry I am not familiar with this. So your doctor doesn't have this sort of information? You may be getting mixed signals as there are several ways of doing this, and your doctor may want to continue to taper you until you are further down. I'd ask them directly what the options are. Are you planning to switch to a patch or orals, or go completely off?

I'd think at some point it would be good to switch you over to an oral or patch so you can self taper (or maintain a dose and have the pump removed). If you were to turn it off at any dose, you'd go into withdrawal. I seem to remember reading they have to fill it with saline until they can surgically remove it though. I'm curious what your long term plan is. Most people who get pumps put in do it as they have no better option. I haven't heard someone saying they are sick of being attached to it. Was the dose not sufficient for your pain? Best wishes.

Shoreline 09-19-2012 09:17 AM

Re: Fentanyl Withdrawal/Pain Pump-Removal
 
I can't imagine wanting to go back to orals after having a pump, but it your decision. Diluting or changing the concentration is just another way to change the dose. Why not just continue on the schedule the doc has been using and avoid most of the negative side effects.
Good Luck, Dave

lginfl 10-27-2012 03:09 PM

Re: Fentanyl Withdrawal/Pain Pump-Removal
 
[QUOTE=tortoisegirl;5055537]Welcome! Sorry I am not familiar with this. So your doctor doesn't have this sort of information? You may be getting mixed signals as there are several ways of doing this, and your doctor may want to continue to taper you until you are further down. I'd ask them directly what the options are. Are you planning to switch to a patch or orals, or go completely off?

I'd think at some point it would be good to switch you over to an oral or patch so you can self taper (or maintain a dose and have the pump removed). If you were to turn it off at any dose, you'd go into withdrawal. I seem to remember reading they have to fill it with saline until they can surgically remove it though. I'm curious what your long term plan is. Most people who get pumps put in do it as they have no better option. I haven't heard someone saying they are sick of being attached to it. Was the dose not sufficient for your pain? Best wishes.[/QUOTE]

gmak 11-03-2012 04:46 PM

Re: Fentanyl Withdrawal/Pain Pump-Removal
 
[QUOTE=Shoreline;5058549]I can't imagine wanting to go back to orals after having a pump, but it your decision. Diluting or changing the concentration is just another way to change the dose. Why not just continue on the schedule the doc has been using and avoid most of the negative side effects.
Good Luck, Dave[/QUOTE]

Hi shoreline, i think we've seen each other a few times on this board! Do you mind if i ask you a few questions? You have a intrathecal pump right? My story is 30 yrs long, so i will get to the point. Have you ever heard a dr say that to get a morphine pump you have to stop all opioids for 6 weeks, in a rehab center? Im on fentanyl patch 100mcg & msir 30mg/3 a day prn. Is that too much? A person that would need a morphine pump certainly
would be on high doses of pain meds, right? Wrong? 4 lumbar lams with dural grafting, tethered cord, severe adhesive arachnoiditis. Thank you, gmak

lginfl 11-04-2012 08:49 AM

Re: Fentanyl Withdrawal/Pain Pump-Removal
 
Follow up from my post: I am happy to say that I finally got off the Fentanyl pump withdrawal & have had it removed!!! It has been a very hard road to travel!! I had the pump removed Oct.4 with an overnight stay @ hospital. Two weeks later, my neurosurgeon removed staples & drained fluid built up in my back, the same day I wound up back in the hospital with a severe CSF leak. Operated on the next day to repair.
Today, I am still swollen, recovery has been unbelievably hard & slow. But I am happy to say I am drug free!!!
I have to mention an important part of this story…When I had the pump put in, I had a leak (same place), after 3 blood patches didn't work, I ended up @ my neurosurgeon. We discussed (the 3rd time) fusing my spine @ the L3-4 level. Being that he needed to go into the same space (to fix the leak) I decided to have both done.
I guess the moral to this story is simple: Things happen to us for a reason. Surgery is always a "roll of the dice"! And always be your own advocate when it comes to your health!!! And God bless to all!!! :angel:
ALSO, ANYONE WITH CHRONIC PAIN: GET THIS BOOK!! It totally turned my whole thought process around @ chronic pain.
The Chronic Pain Solution-Your Personal Path to Pain Relief by Dr. Dillard
(I had to order it from Barnes & Noble because it was out of print-this Dr. is a pioneer in pain & I can't say enough @ the great & positive impact this made in my life!!!)

gmak 11-04-2012 09:42 AM

Re: Fentanyl Withdrawal/Pain Pump-Removal
 
Hi iginfl,
Im so glad thats over for you! Long road, tho. I know CSF leaks all to well. So, happy for you that it was able to be patched! (See my previous post on this thread).It really racks up the number of surgeries to say the least! The pain of it all. Oh im sorry. Did you have to do the bedrest thing? Glad your on the mend! Wow, & the drug free life! Sooo great! Thanks for the update, i was wondering how things were going. God bless your recovery, gmak
Ps: Btw, ive been offered a pump by 2 drs. But, brcause of CSF leaks & dural patches i hesitate. Your thread made me know it isnt for me. Too risky! Thank you that you shared. I agree that God is involved with your recovery, no need for pain meds sounds like a miracle! Thank you again for sharing your story! Gmak

lginfl 11-04-2012 10:54 AM

Re: Fentanyl Withdrawal/Pain Pump-Removal
 
Thank you gmak!!! I'm touched by your response and thankful there are compassionate people like you out there!!! (Especially when even our closest family doesn't "get it") I guess that's why we have these boards!
I've prayed that if I could help just one person, make even a little decision, I would be happy!!! Hopefully I did that for you. Best wishes and God speed on your healing!!

gmak 11-04-2012 05:26 PM

Re: Fentanyl Withdrawal/Pain Pump-Removal
 
Hi iginfl,
I dont doubt for one second that what happened for me was an answer to prayer! So, glad it was for you, too. Yes, you DID do that for me today. Like you said everything happens for a reason. I saw your post on a thread about this being worst surgery. Boy, do I get it! Had 32+ fat & fascial grafts in 4 surgeries because of CSF leaks. We have alot in common & I cant wait til the day i can say i am drug free & dont have pain! Really glad to know you. Thank you again for the confirmation, gmak

gmak 11-12-2012 08:41 PM

Re: Fentanyl Withdrawal/Pain Pump-Removal
 
[QUOTE=lginfl;5083414]Follow up from my post: I am happy to say that I finally got off the Fentanyl pump withdrawal & have had it removed!!! It has been a very hard road to travel!! I had the pump removed Oct.4 with an overnight stay @ hospital. Two weeks later, my neurosurgeon removed staples & drained fluid built up in my back, the same day I wound up back in the hospital with a severe CSF leak. Operated on the next day to repair.
Today, I am still swollen, recovery has been unbelievably hard & slow. But I am happy to say I am drug free!!!
I have to mention an important part of this story…When I had the pump put in, I had a leak (same place), after 3 blood patches didn't work, I ended up @ my neurosurgeon. We discussed (the 3rd time) fusing my spine @ the L3-4 level. Being that he needed to go into the same space (to fix the leak) I decided to have both done.
I guess the moral to this story is simple: Things happen to us for a reason. Surgery is always a "roll of the dice"! And always be your own advocate when it comes to your health!!! And God bless to all!!! :angel:
ALSO, ANYONE WITH CHRONIC PAIN: GET THIS BOOK!! It totally turned my whole thought process around @ chronic pain.
The Chronic Pain Solution-Your Personal Path to Pain Relief by Dr. Dillard
(I had to order it from Barnes & Noble because it was out of print-this Dr. is a pioneer in pain & I can't say enough @ the great & positive impact this made in my life!!!)[/QUOTE]



Hey iginfl, So, are you still recovering? I was looking for the name of the book you recommended & thought about you. Are you up & around like a "normal" person yet? Theres a "novel" concept! Lol Pun three ways. Asked about the book, your
Pump out 2nd surgery was unexpected and greatest you were on no medicine for pain! All novel! I hope all is well & wanted you to know that you make a
difference! God bless you. :angel:

lginfl 11-15-2012 08:13 AM

Re: Fentanyl Withdrawal/Pain Pump-Removal
 
[QUOTE=gmak;5088021]Hey iginfl, So, are you still recovering? I was looking for the name of the book you recommended & thought about you. Are you up & around like a "normal" person yet? Theres a "novel" concept! Lol Pun three ways. Asked about the book, your
Pump out 2nd surgery was unexpected and greatest you were on no medicine for pain! All novel! I hope all is well & wanted you to know that you make a
difference! God bless you. :angel:[/QUOTE]

Thank you for checking up on me, you are a very endearing person! Unfortunately I got more bad news this week. It appears that I may still have a CSF leak. The MRI's I had with/without contrast indicate that. Although the findings weren't definitive? Which makes absolutely no sense to me whatsoever!!!! So now I'll have to "wait it out again" until I see a new Neurosurgeon on Dec. 5. My anxiety over this has amped up and my faith in my Dr. that did the surgery; has sunk to an all-time low. I cannot imagine ever having to go through this "hellish" surgery again and I won't!!!! How are you doing?? You said you were thinking about getting the pain pump. Have you come to any decision on that? Tell me what's going on with you, please! I'm sick of my story!!!!

gmak 11-15-2012 09:30 AM

Re: Fentanyl Withdrawal/Pain Pump-Removal
 
[QUOTE=lginfl;5089411]Thank you for checking up on me, you are a very endearing person! Unfortunately I got more bad news this week. It appears that I may still have a CSF leak. The MRI's I had with/without contrast indicate that. Although the findings weren't definitive? Which makes absolutely no sense to me whatsoever!!!! So now I'll have to "wait it out again" until I see a new Neurosurgeon on Dec. 5. My anxiety over this has amped up and my faith in my Dr. that did the surgery; has sunk to an all-time low. I cannot imagine ever having to go through this "hellish" surgery again and I won't!!!! How are you doing?? You said you were thinking about getting the pain pump. Have you come to any decision on that? Tell me what's going on with you, please! I'm sick of my story!!!![/QUOTE]
:angel::angel::angel:Angels & mercy to you dear iginfl! That happened to me 3 times! Are you having to stay horizontal?! I feel that about my NS of 17 yrs who i dearly loved& trusted with my life. He KNEW I had this horrid condition & never told me or & sent me to PM for epi steroid that worsened the adhesive arach. Still, i wasnt told from 1988 - 2012! Sing God is in control. I went back to my physiatrist(physical medicine & rehab dr) to get away from new pm who coersively said epi injs, pump or stim or no medicine, PM&R treating me now. But, when i called for appt i got dec 8, meds run out on 11/28. Stretching meds but in so much pain. Mom out of hosp
yesterday, all want me to be normal. Awakened with # 8 pain, feet no
feeling & fell. 2nd time in a week. FYI: what finally fixed my eternal CSF leak was called a plastic closure with a fascial graft. In case you need to
know. Your old NS, ehat did he offer you? What is your current state?

PS: my decision completely & totally on what you have posted about maker of your pump, your experience. No, wont get my dura cut or punctured by anes, 3 NS wouldnt touch me..so while f patch & oral helps, no pump ot stim for me. Did you have > #5 pain on pump? Adhesions all over my CNS,
patches #32 on dura. It would have cath destroyed in 1yr dont you think? You can see my full mri report on healthboards in back probs or pain mgmt board, thread titled MRI results interpreted please. If you take a peek, let me know, please post back your state. Will start praying for you right now.I consider you my friend & hope you feel the same.keep posting please, i want to know how things are for you. Waiting for reply & praying. Gmak

lginfl 11-15-2012 10:51 AM

Re: Fentanyl Withdrawal/Pain Pump-Removal
 
I read your posts about your MRI, Wow I'm speechless. You mentioned MD Anderson Hospital-I've heard a lot of great things about it. I will post more later..I have to go pick up my MRI on disk to send to my neuro that did the CSF leak surgery. To get his opinion as well. We have a lot in common!!! I'll post again this evening.
Hang in there, my new friend, keep your chin up and try not to stay fixated on what can't be answered right now. That's what I have got to do or I'll go insane!!! TTYS!

gmak 11-15-2012 11:41 AM

Re: Fentanyl Withdrawal/Pain Pump-Removal
 
Iginfl, please write down on paper just in case, plastic closure, facial graft. Ok, ttys! Let me know how youare before december would be appreciated. Also, if you have ideas about what i should do. So, mri bad, like really bad? M.D.Anderson for cancer only. Point was i cant get help in famous med centre! Thanks!

lginfl 11-16-2012 10:12 AM

Re: Fentanyl Withdrawal/Pain Pump-Removal
 
[QUOTE=gmak;5089537]Iginfl, please write down on paper just in case, plastic closure, facial graft. Ok, ttys! Let me know how youare before december would be appreciated. Also, if you have ideas about what i should do. So, mri bad, like really bad? M.D.Anderson for cancer only. Point was i cant get help in famous med centre! Thanks![/QUOTE]
Funny you said: I should write that down, because I did!!! Great minds…I am having to type this all over again because I timed out!!! Dammit!!!
Anyways, the lady that responded to your MRI post seemed to have a lot of knowledge about your case. I have no earthly idea, except that I agree with the fact you have a lot of scar tissue (in the subarachnoid space) from all the leaks you've had. Which brings me to a question I have for you. My MRI states that at the L3 level (where last surgery was) suggests the sequela of CSF leak and/or post surgical seroma. A track does extend from the superficial collection toward the spinal canal. (which is where my swelling is in my back-at the incision & to the right) The Impression says: there's a moderate to large fluid filled focus at the L3 level representing the sequela of CSF leak although no direct intrathecal communication is appreciated as detailed above. Then it says Abscess is felt less likely/but cannot be ruled out. Correlation with patient history. Being that you have been thru this what do you make of it???? Please shoot it straight if you have any info. I'm totally freaking out & don't have an appt. until Dec. 5 with the new neuro. Do you text message??? Let me know…we should talk sometime?
Lori


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