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Old 02-14-2011, 02:35 PM #1
Leesha33 Leesha33 is offline
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Unhappy Considering Pump Removal- Need Advice!

Hello everyone!

I just joined this site today and after searching all over the internet it seems I have come to the right place

My main reason for this thread is that I currently have a pain pump and I am considering having my it removed. I am not making any sudden decisions, I am just looking for others experiences out of curiousity.

My quick background:
I will be 32 in 2 weeks and I have had chronic back pain since age 19. I had a spinal fusion at L5/S1 at age 20, another fusion at L4/L5 at age 24 (they also redid L5/S1). In 2007 I was diagnosed with "Failed Back Syndrome" and had a Medtronic Intrathecal pain pump installed.

Like most of you here I have been on any possible pain medication you can think of. I have built up such a tolerance that nothing worked anymore. At the time of my pump installation I was on 100mcg of Fentanyl patches every 48 hours because I would spend the entire 3rd day in withdrawal. I was quickly approaching that even on the 100mcg patches so I and started leaving my old patch on until the new one kicked in- terrible I know
So from the reading I have done online so far it seems pretty common that the side effects of the pump are not always thoroughly explained. I asked several times and consipation was the main one that was mentioned, except for the rehearsed general surgery complications disclaimer that they have to give you. Despite this I do have a very intelligent and talented Dr. It just seems that not much is really documented (or maybe he wasn't concerned due to my tolerance to medication).

So here I am- exactly 4 years into my pump and although I still have quite a bit of pain like the rest of us. It does help with the pain especially since I do not take oral meds.
My problem is that I retain so much fluid that I am umcomfortable all the time, I am always tired, never feel good, and my quality of life is not good. I am young and have always been so social, desperately want children, and now all I want to do is be home- any chance I can get. Lastly, I have gained 50 pounds. I am 5'5" and went into the surgery at 125 pounds and now weigh 175. There is a lot of debate online about the pump not being the cause of weight gain but I know my body and I have always been a super healthy eater (still am) and I workout in ways that I can- you do not just gain 50 pounds from being a little less active- I don't care what anyone else says. I even lost weight recovering from my other operations. My body is just not right-I have not mentrauted in the last 4 years (sorry for the TMI)- ironically all of this started when the pump was put in.

I'm sorry for the long post, and I apologize if this topic has already been posted but I couldn't find anything. I am looking for anyone that has had their pump removed to PLEASE give me your experience. Again, I am not taking this lightly and know that my pain will be very high and I will go through withdrawal. I just really want to hear from someone that has gone through it.
Even if you have not removed your pump maybe you can share your side effects and how you work through them?

Thanks in advance and I appreciate the support!
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Old 02-14-2011, 08:09 PM #2
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Heart Welcome Leesha!

This here is the right place for the whole of our implant for pain discussion threads and there are some on who have specifically had threads going the direction of pain pump issues. As I recall, Bobinjeffmo has a pain pump, and would be a good guy with whom to dialogue. Mine is a Boston Scientific Spinal Cord Stimulator, the electrical approach, so my comments would be wholly off point.

I will poke around and see whether I can scare anyone up who has pain pump issues. Oh, and I will suggest PoohAC as one who is among us and works in the medical field, so she has been helpful on questions on a variety of points before.... also Rrae, who works in the medical field as well. Both of them, however, are SCS patients like me, so they have no experience with the pump as users.

Fear not for bringing what you might believe a long post to the threads, gee, if we were under constraints to keep it short, it would be almost impossible to give effective support. Whatever you bring to the threads on your implant is fair... the disappointments, the how it feels, the hard parts, the benefits you have know, upset, the whole works. That is why we are here!

Here I go lurking,
Mark56
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Old 02-14-2011, 09:16 PM #3
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Default Welcome kiddo

Quote:
Originally Posted by Leesha33 View Post
Hello everyone!

I just joined this site today and after searching all over the internet it seems I have come to the right place

My main reason for this thread is that I currently have a pain pump and I am considering having my it removed. I am not making any sudden decisions, I am just looking for others experiences out of curiousity.

My quick background:
I will be 32 in 2 weeks and I have had chronic back pain since age 19. I had a spinal fusion at L5/S1 at age 20, another fusion at L4/L5 at age 24 (they also redid L5/S1). In 2007 I was diagnosed with "Failed Back Syndrome" and had a Medtronic Intrathecal pain pump installed.

Like most of you here I have been on any possible pain medication you can think of. I have built up such a tolerance that nothing worked anymore. At the time of my pump installation I was on 100mcg of Fentanyl patches every 48 hours because I would spend the entire 3rd day in withdrawal. I was quickly approaching that even on the 100mcg patches so I and started leaving my old patch on until the new one kicked in- terrible I know
So from the reading I have done online so far it seems pretty common that the side effects of the pump are not always thoroughly explained. I asked several times and consipation was the main one that was mentioned, except for the rehearsed general surgery complications disclaimer that they have to give you. Despite this I do have a very intelligent and talented Dr. It just seems that not much is really documented (or maybe he wasn't concerned due to my tolerance to medication).

So here I am- exactly 4 years into my pump and although I still have quite a bit of pain like the rest of us. It does help with the pain especially since I do not take oral meds.
My problem is that I retain so much fluid that I am umcomfortable all the time, I am always tired, never feel good, and my quality of life is not good. I am young and have always been so social, desperately want children, and now all I want to do is be home- any chance I can get. Lastly, I have gained 50 pounds. I am 5'5" and went into the surgery at 125 pounds and now weigh 175. There is a lot of debate online about the pump not being the cause of weight gain but I know my body and I have always been a super healthy eater (still am) and I workout in ways that I can- you do not just gain 50 pounds from being a little less active- I don't care what anyone else says. I even lost weight recovering from my other operations. My body is just not right-I have not mentrauted in the last 4 years (sorry for the TMI)- ironically all of this started when the pump was put in.

I'm sorry for the long post, and I apologize if this topic has already been posted but I couldn't find anything. I am looking for anyone that has had their pump removed to PLEASE give me your experience. Again, I am not taking this lightly and know that my pain will be very high and I will go through withdrawal. I just really want to hear from someone that has gone through it.
Even if you have not removed your pump maybe you can share your side effects and how you work through them?

Thanks in advance and I appreciate the support!
What med and what rate is you pump on?? I dont know about most but I dont think if I was getting pain relief that I would have the pump removed. I would like to know if you are getting steroids in you mix. As we grow older our metabolism does slow down, happens to the best of us.
Anyway let me know what your med is and we will go from therez
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Old 02-15-2011, 04:55 AM #4
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Thank you so much for the support, help, and kind words. It is nice to have a place to go to to talk about things and have people understand. Don't get me wrong, I have an amazing support group of friends and family but I can still feel so incredibly alone at times. I appreciate the contacts and help searching for info. That means so much!

I have a mixture of Dilaudid, Bubificane (sp), and a small amount of Clonodine. I don't know the exact amounts of each but I know that I receive ~6mg/day of the mixture and most of it is Dilaudid. If there are steroids I have not been informed. However, even with the pump I have had my share of steroid shots. Last March I had 3 sets of shots on each side. The third round wasn't all steroids but just added for anti-inflammation since I was having a nerve ablation procedure done. The year before I had 2 rounds of shots in my cervical discs. I have also had some injections prior to that but it was before the pump was inserted and I didn't have any side effects.
Is it possible that the steroid shots could still be causing issues?

The only way that I can prevent the swelling is to just not eat- anything. I was talking to my sister about all of this today and she remembers sitting outside with me last summer and I ate a small snack and my ankles and calves blew up. She said it's like you could see them expanding. I have had my weight fluctuate by 15 pounds within a week. I also understand that weight changes with age but something is up, I know it. We're talking 50 pounds despite the fact that I eat textbook healthy.

I have decent pain relief with the pump and being so young I went through hell to get it and finally off all of the pills and patches so I definitely will not just take it out without the most careful consideration because once it's out I am back to square one.
I do think back to a 5 year period (after surgery #1) where I dealt with chronic pain but took no medication, except for the occassional vicoden on a really bad night. I felt alert, alive, not sluggish, and like myself. Then again it can be easy to forget pain and I have to remember that I spent plenty of time miserable. It just seems that many of my problems started when the regular pain meds started- it's a vicious cycle and becomes a question of which is worse (especially because I still have quite a bit of pain).

I guess I have a lot to think about and at this point I am trying to find any and all information that I can. I found an interesting article that someone posted on here and it says that a side effect of the pump is loss of menstruation. Bingo! I don't think my Dr. meant to keep this from me but I am not his typical pump patient. My hope for right now is that I can get these side effects under control. Thanks again for listening and for your support
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Old 02-15-2011, 05:25 AM #5
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Heart Welcome Leesha!

Oh you certainly ARE in the right place for support!
I read your post and really wanted to jump thru the screen to give you a hug!

FIRST thought that came to mind! Have you had your THYROID thoroughly checked?? Alot of what you are describing sounds JUST like what I was going thru 7 yrs ago when I had turned 40.....It was discovered that my thyroid was not functioning well (HyPOthyroid) and I seemed to put on weight by simply breathing the air! But I was also on some meds that are known for weight gain (Lyrica especially)......
Some of the other things you mentioned (lack of menstrual, etc)....at your young age....could very well be that your body's 'throttle' needs adjusted (Thyroid)

Also....Magnesium supplements do wonders for constipation. NOT the Magnesium Oxide....but the Magnesium Citrate and Glycinate......

Pooh brings up some good points to ponder as well
Mark says it just BEAUTIFULLY......

I keep calling everyone on this forum GEMS from Heaven! We care so much for each other's situations, struggles, etc.

I was EXACTLY where you were when you described the Fentanyl patches!!
Isn't it a scary thing when our bodies continue to become more and more tolerant to the hardcore meds.....where do we go from there!!

Well, I've since lost the weight, am not on Lyrica (bad bad bad....for me anyway)..... I do have some 50mcg Fent Patches on hand due to some maintenance issues I've had with my SCS ..... but all in all......if we remain determined to get a better quality of life and have a medical team backing us up who REALLY know what's going on.....then you can and WILL get improvement!! And from the sounds of it, you do have a doctor who you really like.

Granted, most of the posts here are about the SCS, (I wish more and more pumpers would join on).....but if you'll hang in there and bear with us, we'll round up some of the folks who are pain pump veterans and can give real good input.

So, aside from the weight gain, what is the main reason you are wanting to get the pump taken out? Are you just getting burned out with the commitment of having to get refills, etc....?

Thank you for introducing yourself and sharing your story. You'll get good input.
One thing you might want to do in the meantime is try using the 'search' feature at the top of the page and type in "Pain Pump" and posts of previous discussions will pop up.

So glad you found us! Just holler if you need help in finding your way around!
Rae

Here is one of our Pain Pumpers.....Bob is fantastic! check out his profile page and send him a 'visitor message'.......I'm not sure how often he gets on here these days, but here is one of his very informative posts on what the pump has done for him....
http://neurotalk.psychcentral.com/post701979-14.html
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Old 02-15-2011, 11:36 AM #6
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Oh Rrae you are so amazing and I already feel hugged by you! It is so amazing that complete strangers will take the time to give advice, hope, and just care in general. I am SO GLAD I stumbled onto this website through various searches and "googling". (BTW- my middle name is Rae )

So here are the main reasons that I have started to question the pump:

1) Yes, as shallow as it may seem the truth is the truth and the weight gain has destroyed my self esteem. I come from a female dominated family (my mom has 3 sisters- all with daughters, I have 2 sisters, etc. and no female is over 130 pounds, except for me now. We are genetically small and eat well. It may seem superficial but I do not feel like myself. Having said that- it is not the main reason at all (although I will not lie, it sucks).

2) I am always tired and feeling sick to my stomach. I am now the girl who cancels on people so everyone triple checks to see if plans are still on. I even missed an important family Baptism Sunday because I was so drained and felt so nauseas.

3) When the pump was implanted I was told that the medication would not reach a fetus since the medicine didn't enter my bloodstream and it was the safest way to go. I don't know the difference and was skeptical so I searched and searched online and found nothing on pumps and pregnancy (I don't believe my Dr. told me this but possibly a nurse) all of the research I did focused on the positive so despite my skepticism I figured it has to be better than my unborn child receiving Fentanyl! Well recently at one of my refill appointments one of the nurses asked about the baby thing and she says to me "well you do know that your baby will be born addicted to narcotics". I am a smart girl and knew this deep down all along but to hear it struck a nerve and the questioning began.

5) The painful swelling- it's so uncomfortable

4) I am not dopey or feeling drugged but I feel like my blood has been replaced with sand.

I am thankful for the relief that my pump has offered but if I could just manage the side effects I think I could get through the rest, so maybe I focus on that rather than the pump itself.
I know there are many more people out there with pumps and I wish they would come out and talk because I'm finding it so hard to get any experiences. We need to be talking about this stuff and helping each other!

I never thought about the thyroid thing. I think it is a fantastic idea to have checked out. My sister suggested having my kidney function checked as well.

Again- I cannot say thank you enough. I logged into this site feeling more alone than ever before and I already feel the support! Hopefully I will be able to return the love soon enough! Staying strong and not giving up is the key!
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Old 02-15-2011, 01:35 PM #7
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Hi Leesha

Welcome to our forum and RAE Is the best in the world to give advice. She is just wonderful.

Im sorry I dont know much either about pain pumps as I have a SCS, but the knowledge and information that Rae has is amazing and she will definitely guide you in the right direction..


Good luck with what ever you decide

Jackie
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Old 02-15-2011, 10:13 PM #8
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Quote:
Originally Posted by Leesha33 View Post
Thank you so much for the support, help, and kind words. It is nice to have a place to go to to talk about things and have people understand. Don't get me wrong, I have an amazing support group of friends and family but I can still feel so incredibly alone at times. I appreciate the contacts and help searching for info. That means so much!

I have a mixture of Dilaudid, Bubificane (sp), and a small amount of Clonodine. I don't know the exact amounts of each but I know that I receive ~6mg/day of the mixture and most of it is Dilaudid. If there are steroids I have not been informed. However, even with the pump I have had my share of steroid shots. Last March I had 3 sets of shots on each side. The third round wasn't all steroids but just added for anti-inflammation since I was having a nerve ablation procedure done. The year before I had 2 rounds of shots in my cervical discs. I have also had some injections prior to that but it was before the pump was inserted and I didn't have any side effects.
Is it possible that the steroid shots could still be causing issues?

The only way that I can prevent the swelling is to just not eat- anything. I was talking to my sister about all of this today and she remembers sitting outside with me last summer and I ate a small snack and my ankles and calves blew up. She said it's like you could see them expanding. I have had my weight fluctuate by 15 pounds within a week. I also understand that weight changes with age but something is up, I know it. We're talking 50 pounds despite the fact that I eat textbook healthy.

I have decent pain relief with the pump and being so young I went through hell to get it and finally off all of the pills and patches so I definitely will not just take it out without the most careful consideration because once it's out I am back to square one.
I do think back to a 5 year period (after surgery #1) where I dealt with chronic pain but took no medication, except for the occassional vicoden on a really bad night. I felt alert, alive, not sluggish, and like myself. Then again it can be easy to forget pain and I have to remember that I spent plenty of time miserable. It just seems that many of my problems started when the regular pain meds started- it's a vicious cycle and becomes a question of which is worse (especially because I still have quite a bit of pain).

I guess I have a lot to think about and at this point I am trying to find any and all information that I can. I found an interesting article that someone posted on here and it says that a side effect of the pump is loss of menstruation. Bingo! I don't think my Dr. meant to keep this from me but I am not his typical pump patient. My hope for right now is that I can get these side effects under control. Thanks again for listening and for your support
Dilaudid and buprivacaine both cause nausea at times. Clonidine can cause swelling. Have your thyroid checked, do you still have your gallbladder? Maybe an ulcer? How much sodium do you take in? Do you have more swelling with heat? How is your kidney function? Just throwing some things out there for you to think about.... Have you sat down and talked with your pain doc about your concerns...
z
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Old 02-16-2011, 12:13 AM #9
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Thumbs up Listen to Pooh!!

Now POOH knows her stuff! She's got a professional medical background and we LOVE her for it! ....(...she works too damn hard....but don't tell her i said it!)

Me, I'm more just the 'motherly' type.....
I don't have any medical training whatsoever. Just learned alot by having to be my own advocate during my 6 year battle of the undiagnosed thyroid thing, the unexplained peripheral neuropathy/RSD stuff, and some other 'woman' issues that folks probably don't want to hear details of.....BEING A WOMAN SUCKS sometimes!

Leesha! Your post is priceless!
Thank you SO MUCH for that! You have no idea how much you've helped those of us who don't have the pump to understand more about what all is involved! Wow!
I SO hope others who have any experience (good or bad) with the pain pump will see your post and feed in to it! We really DO need people to speak up!

And don't cut yourself short one BIT! Weight gain is a big deal to us! I totally understand how you feel! So, don't minimize your openess about it. It's VERY important to have our self esteem. I'm so glad you've shared all that! Priceless I say....priceless....
I have much I'd like to say, but I'm STILL at my office .....i need to get home. I'm starting to get my days and nights turned around again!
......well, that wouldn't be TOO bad...... I could stay up a couple more hours and have coffee with Jackie who lives in Ireland!....(she's about 6 or 7 hours ahead of us!)

Anyway.....now we have 2 RAE's!!! I have a cool thing somewhere in my left pocket I'll have to dig out....
....Ahhh! HERE it is! .... --->>

Lovely innit
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Old 02-16-2011, 12:38 AM #10
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Heart Gist so glad

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

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

Yep,
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