Chronic Pain

quote:

Originally posted by Yooper60:
Hi everyone, I have been through a few things since I had my pump implanted in March. I have Dilaudid in my pump now and have edema (swelling) in my feet and calves, plus some shortness of breath. This is attributable to Dilaudid and was a surprise to me as I had less trouble with it orally. I saw your mention of some other drugs that can be used, Bob, and am wondering what the names of those meds are that can be used in the pump. Morphine is on my allergy list. My current dose of Dilaudid is 0.9mg per day, with too much breakthrough pain, which leaves me in a quandary. Raising the dose may worsen the edema (now being handled by a diuretic, Lasix). Thanks for all you do, Bob. My pain level is frequently at a level 5 or 6, as opposed to 8 or 9 even with meds, before I had my pump. Thanks and may we all have a less painful day today. Linda

Yooper60,
I had the same swelling with Dilaudid and Morphine. My doctor tried a number of different medications and we finally ended up with a combination of Fentanyl, Ketamine and Bupivicaine. I just thought you would want to know that there are a lot of different drugs out there that can be used it all depends on your doctor and what he is familiar with. The hardest part is that the swelling will stay for a few days after the medication is changed so it takes a while to tell how you will react to the new medication.

Good luck

Hello,
I have had the pump for 6 years. I have been prone to clogs and have required 5 revisions. Although I have medicare and Blue cross I find myself deep in debt. Also, the doctor who has treated me all along moved 2000mi away without any notice. So now that the pump has stopped working again I have requested having it removed. I have been told that no one will prescribe the oral meds I would need so my only option is to have it replaced with a new model.
The scar tissue from all these surgeries has caused intracable back pain. Simply stated...I feel trapped and controled. I'm open to suggestions....thank you for listening...tinman

I don't see how anyone could think about having the pain pump installed after reading these 22 pages of posts. Subtract Bob E.'s posts and almost all are extremely negative. As desperate as I am after 4 major surgeries, 9 vertebrae fused,etc,(constipation due to Ox and Methadone) I think I'd lay on icepacks the rest of my life if I had to. Is it possible that only those with problems with the pump post here. There is another forum that is very similar. Scary!!

I have a question. I have a spinal cord tumor that is non-malignant but inoperable. It will eventually take the use of my legs. The tumor is from T11-L4. I have been taking narcotic pain meds for the last three years that have not helped all that much.
Recently, my daughter's boyfriend who lives with us was diagnosed as being bi-polar. He has a drinking problem along with not believing that he has this illness. Needless to say he has been manic for a while. At mid May he walked out the door stole my car and totaled while driving drunk. I found out a couple of days before that my pain meds were very depeleted. I assumed that I had been taking to many due to the stress of what was going on and the fact that I was in extra pain from an open gall bladder surgery. I was on 40mg of oxycontin per day and six to eight percocet per day. My pain doctor told me to decrease the percocet to three which I didn't do. The oxycontin I was taking as prescribed. Anyway to make a long story short he admited stealing them after he totaled my car. I didn't know this and told the doctor I wanted to be off all drugs and that I had thrown them away. I had only been taking these drugs for about a month and a half. (I occasionally take drug holiday's to assess my pain levels) I am seeing my doctor tomorrow and would like to talk to her about the pain pump as I am sure she will not believe me as I did not report it, I just can't this guy is going to do three years from the other stuff he has done while being manic.
My question, is the pain pump a good alternative to taking oral meds, and is this a good avenue for me to take as my doc will probably not trust me anymore.
In the past my neurosurgeon wanted me to have the pain pump installed but my pain doc believes I am to young. I am 50 almost 51 do you know the average age of a pain pump participant?
I'm sorry this is so long but I'm not quite sure how to talk to her about this and I really believe that the pain pump would be a good thing for me. I understand that it helps a lot of people without the side effects of oral narcotics.
Also, if the medication that goes in the spine stays in the spine why do you go through withdrawals when you don't have it? I thought that withdrawals were from the drug's interaction with endorphins? can you clear this up for me?
I also understand there were recalls for the pump are any that are installed now good ones and I see that alot of people have trouble with the cathetar that is implanted at the spine is this very common?
I'm sorry this is so long, I'd just like to know these things and any help would be greatly approciated

vickiebouten: read my short post above your message. Take an hour or more and read all 22 pages of this forum. You will get all your questions answered, plus the pain pump installation will scare the crap out of you. Very few positive things said about the pump here. I don't know why? It can't possible be that bad or is it.

Anyone know how I go about getting my Intrathecal pump removed??? Will Insurance pay? I've been told it may not

Mag1

Hi Chet,

I fully agree with you that the pump implant is not as bad as some have posted. I think there are too many negative comments in this thread but people who are fully satisfied may not post at all. Instead, those who've had problems are more likely to comment and seek suggestions for solutions.

Certainly, the implant procedure itself is not bad compared to other surgeries. Mine was done on an out-patient basis and my problems were not with the pump itself but with the spinal catheter. It's finally been corrected and the system has been working fine ever since. I'm very happy with the chronic pain relief.

I think some of the negative comments were the result of similar failures and also bad reactions to the medications used in the pump. Not everyone will respond positively to the morphine sulphate that's typically used and the alternatives may be just as bad.

When I started this thread, I was hoping that it would encourage people to consider this option for chronic pain relief. I think that many are quite satisfied unless they encounter a problem and then they may post their experiences.

I see there's another thread concerning the pump but I haven't read the posts there. I may take a look when I get time.

Hi, Bob, and everyone. I have certainly had a good experience with my pump. I have had some problems with Dilaudid, but so far I am managing the side effects pretty well. I have been able to ride my horse again, and also, I was out in the woods picking mushrooms, morels, just a week or so ago. I could not believe that I could walk in the woods again. I don't mean on a path either! I would never have been able to do these things without the pump. It has also given me my independence back in other ways. The brain fog from oral drugs has lifted and I can now drive myself to the doctor, or anywhere else I might decide to go, although with the price of gas, I am not exactly flitting around the countryside. At first I was having more problems, but the biggest cause of them was a blocked artery in my worst leg. It is truly amazing what blood flow to my leg has done, but it is also truly amazing what my pump (put it 3/08) has given me back. Linda

Bob and Yooper60: thanks for postive info. I'm considering it this winter. May have no choice as pain seems to get slightly worse each year and constipation was a minor problem in my life even before my surgeries/pain meds. I agree that the more desperate you might be, the more you happen onto these forums and put in your two cents. The good outcomes don't go looking for more help. I think.

Hi Yoopeer60,

Thanks for posting such a positive message. An earlier post indicated that most of us are very unhappy with the pump and I don't agree. Sure, some of us have had problems and setbacks and others could not adapt to the pump at all but, there are thousands of people who have been relieved from their chronic pain by the pump and reduced or eliminated their dependence on oral narcotics with all their bad side effects.

Glad things are going so well with you. I had total knee replacement surgery recently which has nothing to do with the pump and am doing a lot better now that I can walk. The knee pain was not affected by the pump and I didn't expect it to be but if I still had back pain in addition, it would have been pretty awful.

Greetings fellow pump users,
I had my pump installed in Oct of 06 and have been having problems with it since then. I will give you my latest example. I was taking 80mg of norco a day for my breakthrough pain while my doctor made gradual adjustments on the morphine dosage. For some reason I could not realize and benefits from the increases he made and my physician stated he though I was abouing my use of oral meds. He finall cut me off completely and I would up in the ER from withdrawals. I went back to my neurosurgeon who decided to do a cat scan. It seems the catheter was broken and I had a pocket of morphine the size of a hockey puck in my back nest to my spine. My surgeon repaired the break but the pain specialist would not discuss the matter and now I have to start over again beginning with 1.0mg of morphine daily continuous dosage without the benefit of any break through oral meds. Then I found out about the recall from medtronics how further uses of the device could cause a granuloma and be potentially deadly. I've asked the FDA and medtronics just exactly what is a class 1 recall and have never received a decent answer. I'm going to ask my surgeon to remove the pump for just these reasons. I hope others can find relief with it but I have not to this point.

Hi robtodnn,

I, too, had catheter failures until a neurosurgeon placed a thicker catheter further up the spinal cord (T6-7 vs. the typical T10-11) and I have had no problem since.

I'm sorry to hear that your physicians are not treating you with much empathy. I know how miserable withdrawals can be as I experienced them when the catheter slipped out of the spinal cord twice; however, I did not have a pooling of medication that caused any problems.

I suggest getting another opinion before removing the pump, if it's giving you relief, because the possible malfunction indicated in the recall only affects certain units.

Personally, I would hate to go back to large amounts of oral medications with their unpleasant side effects that I was previously taking. So long as my pump, which is currently giving me only 3 Mg. of morphine sulphate over a 24 hour period and providing almost complete relief from chronic pain, I plan to keep it implanted. If it malfunctions, I would have it replaced rather than go back to oral morphine or other narcotics which I had been given over the years.

I wish you the best and let us know what you finally plan to do.

Bob

Yooper60 (from UP? - you should read the yoopers manual); and everyone:

Yes, there is a bit of negativity here on the boards, but I think it's just like everyone says - the complainers and those with problems post more than those that are satisfied - that's human nature!

I have had nothing BUT success with my pump! I just got my latest tweak today - they upped my 'per day' dose, increased the concentration (20 mg/10 ml instead of 10/10; and so far, I've noticed that I'm not hurting near as much standing up and walking as I did 24 hours ago! I have severe lung problems (COPD) so the decreased narcotic load (and the fact that it's in my spine and not truly systemic) is a major godsend. I have trouble with recurrent pneumonias that some docs want to attribute to narcotic use until I tell them just how LITTLE dosage I get compared to pre-pump dosage (100 mics fentanyl and 120+ mg (60?) morphine/day - quite a decrease, just in the morphine alone, nevermind the fentanyl - which is equal to 400 mg of morphine, so I went down from about 500 mg of morphine to 8. Quite a drop! BTW, I had recurrent pneumonias BEFORE the pump, as well - a whole year of 'em - once/month for 8 months (1-2 weeks in hospital/month x 8 months, 2004-2005).

I hope that all those of you that are having trouble with the pump can resolve the problems and those of you who are exploring using the pump at least go for the trial and see what relief you get. Perhaps the trials worked for those the pump didn't, I don't know...maybe it was a quirk or something, I can't understand if they passed the trial, why the pump didn't work as well as the trial (mine did). ::sigh::

Gina

Gina,

I fully agree with you! I've had my share of failures but they were due to catheter problems and not the pump itself. Things have been working fine for over a year now and I'm only at a 3 mg. per day level of morphine. I may get that increased a little next time I visit the doctor but, in general, I've very satisfied and will continue to use the pump as long as I can.

Aloha,
Bob

I am amazed that so many folk like the Intrathecal pump. My own experiences are VERY different and I'm currently awaiting it's removal.
I have had it for 8 months and they have been the worst. NO reduction in pain, only bad side effects.
Nothing that I read or was told prepared me for the reality of living with the thing in me.
All the meds made me dreadfully sick including the much vaunted Prialt.
I find the physical and mental challenge of living with this thing in me quite untenable. I am so depressed I have hardly stopped crying since the day it was implanted.
It is so heavy and pulls me down making me lean over from the waist, and I have had to buy a size larger in clothes it sticks out so far.
I would advise anyone contemplating having one implanted to question their physician VERY closely. They don't tell you of the possible downsides, only the things they think you need to hear.

Don't know what is next for me..a life time of increasing pain I guess.

I have C.R.P.S. Type 2.


Mag1