Chronic Pain

Hi!

I'm so glad I stumbled onto this site. I am having the pump installed this Thursday and I have been searching for experiences to get me mentally prepared for the big day! I have had 2 failed back surgeries and am now on the 100mcg duragesic patches. I may not get answers in time but I have a few qeustions about the experience with the procedure itself-
What was the day of the surgery like? Since I am familiar with surgery I am trying to get a feel for what it will be like. Did you wake up with a lot of incision and surgery pain? How long until you felt good and normal? Also- I am concerned with the patch withdrawal. I will have fentanyl in my pump (which is what is in my patch) so will that help with my withdrawal from the patch?
Just curious what your experience and recovery was like. Thanks!

Hi,

I'm happy to share my experiences with you regarding the pump. The surgery, in my case, was out-patient although they did use general anesthesia because they must make three incisions and tunnel the supply tube from the pump to the spinal cord area all of which might have been too uncomfortable if only local anesthesia was used.

The pump itself is placed in a pocket in the fatty part of the abdominal area via a 3-inch lateral incision. Several anchor tabs on the pump are sutured to the surrounding tissue to help hold it in place. In most people, scar tissue will eventually form around the pump to keep it from moving around. Mine is still quite loose because I don't make much scar tissue. This varies from person to person.

The supply tube from the pump is tunneled around to the side where another small incision is made to help steer it to the back area. In the back, a third incision is made so that the surgeon can
connect the supply tube to a thinner catheter that's placed in the subachronoid space of the spinal cord. A special curved needle is used to direct the catheter upwards to the T10-11 joint or wherever the surgeon decides to place it. The bottom end of the spinal catheter is connected to the supply tube with a little slack to prevent it from pulling out.

The surgery takes about an hour and I noticed some post-surgical pain, primarily where the pump was placed but this only lasted for a few days or so as I recall.

I was taking oral morphine prior to getting the pump so that's the medication that was placed in the pump's reservoir. In your case, it will be fentanyl because that's the medication in your Duragesic patch to which you are apparently responsive.

The pump is initially programmed to produce a fraction of the dosage that is required in the patch because the medication goes directly to the area causing the pain and travels up the spinal cord to the brain. This comparatively low dosage should greatly reduce the side effects from the larger dose supplied by the patch which must be metabolized by the body in order to reach the areas where the pain is produced.

I was taking oral morphine prior to the pump and was instructed to gradually taper down in order to avoid withdrawal symptoms. You have to expect that it may take several weeks or longer in order for you and your physician to determine the proper pump settings that will provide sufficient pain control.

Since you are using the Duragesic patch, I'm not sure how the physician will handle the tapering down. Perhaps, he or she will prescribe a weaker patch as the pump dose is gradually increased until the pump takes over completely. In my case, I was taking oral morphine so it was easy to adjust the dosage by changing the strength and frequency of the oral morphine as the pump took over.

People respond to surgery and pain management in different ways so my experience may not be the same as yours will be. Furthermore, I had three subsequent catheter failures where the catheter actually slipped out of the spinal cord causing me to experience withdrawal which is very unpleasant. I finally had the catheter placed by a neurosurgeon who used a slightly thicker one and anchored it more securely. He also placed it higher up in the T5-6 area. So far, it's holding.

At one time, I also was using a Duragesic patch but found it less effective than oral medications. One of the prescriptions was from a recalled batch which resulted in my not getting sufficient medication so I experienced a nasty withdrawal.

Once the pump is adjusted to an individual's requirements, break-through medication may still be necessary for optimum pain control. I take one or two generic Vicodins a day as needed depending on the amount of physical activity I'm having.

In summary, I think you will find the surgery relatively easy with little additional pain and quite fast healing. My only suggestion is that you practice patience and not expect too much until the pump is adjusted to your particular requirements. After this is accomplished, I think you'll be very pleased with the pump's ability to control your chronic pain and, at the same time, minimize or completely eliminate the side effects from narcotics administered orally or via the patch.

I'll be happy to answer any questions or provide additional information. I wish you the best for a successful surgery and quick recovery. Let me hear from you afterwards.

Wow thank you so much for taking the time to post all of that information. I read the printed medical information but really wanted to hear an actual experience with it. I will be patient and it helps to know that it may take awhile. That way I won't feel like it failed. I have been through fusion surgeries so it sounds like the pain from this operation will be much less. I was on oral medication before the patch and I think I am going to ask to go back to that until my pump is working good. The patch isn't as effective as it was in the beginning and my skin is irritated everywhere.
Thanks again for writing back. Tomorrow is the big day (5:30pm CST) so I will definitely write back when I am home. They are keeping me overnight since it's so late.
Thanks so much!

WOw, Jos! I hope your surgery went well last night, and please check back and let us know how you are doing when you feel up to it.

I look forward to hearing more about how your surgery went and how you feel, Jos. Maybe you could create some Shareposts journaling your experience with the surgery and the adjustment of the pump's medication. I too am on the Fentanyl patch and am very interested in how your transition is. I am sure SO many would find this helpful. Shareposts are like blog posts, and they are being tested on the new beta Chronic Pain Connection website (which will be live in about a week). I would be happy to give both of you the instructions on how to get there for a sneak preview and to start using it if you would like. My email is healthcentralstacy@gmail.com.

And thank you so much, Bob, for sharing your experiences!! How long have you been on the pump?

Glad to have you both here, and please let me know if you have any questions.
Sincerely,
Stacy

Hi!

It's been a week since the surgery and I am starting to feel much better. Still sore from the incisions but not too bad.

I think everyone's experience with this can be different. The 1st couple days hurt a little worse than I expected and part of this is because I am small so there wasn't any room for the device and my skin was stretched over it and the staples were tugging at my skin. Also- I am so resistant to pain medicine and I'm not sure what dose they were giving me in my IV but it was barely touching my pain. Then that night in the hospital my blood pressure dropped so low that they had to stop the pain medicine for awhile. I ended up staying 2 nights because of the blood pressure issue. Even though I had been on the fentanyl patches and he used fentanyl in my test shot he put morphine in my pump. He starts out at the lowest amount and works from there. That makes sense to me. I needed the amount increased the day after and I went in today to remove my staples and he increased it again by 15%. We'll see how this works and increase again if needed. Things may be a lot different when I get back to work.
Bob- do you have the palm pilot gadget with yours? I can give myself an extra dose 6 times a day with it. It's pretty neat.

So overall- I can definitely tell that it's helping my back pain. I was given Norco (which worried me because I was on the 100 mcg patches so I thought yeah right) and they take the edge off the incision soreness but they normally wouldn't touch my back pain and my back is feeling pretty good so far. I was concerned with withdrawal from the patches and I think I did get some symptoms in the hospital and I'm not sleeping as well (I do miss the deep sleep with the patches but that's about it) and my doctor said that could be due to withdrawal. But it was nothing at all like the horror stories I've heard about fentanyl withdrawal. I'm guessing it's because I've had other things in my body to help.

I would love to enter my experiences into the share posts. Especially since my experience is so new and fresh in my memory.

Thanks for the support!

Glad to hear that you are getting along so well with the pump. No, I was not given the opportunity to use the patient control device but I'm aware of it. My pain clinic apparently doesn't use it yet.

It will take some time before the optimum setting of the pump is established. It's nice that you have a method to provide some extra medication when needed. I wish I had that option and I may discuss it with my doctor the next time I'm scheduled for a refill in another week or so.

As you say, you probably didn't experience real withdrawal symptoms when you were removed from receiving fentanyl. When I had to stop taking it because I had a bad batch that was recalled, I felt very sick like I had the flu and in my nose was an awful smell that was being generated internally. The same thing happened when I had the catheter failures and suddenly stopped getting the morphine. Fortunately, I had some oral morphine left over that I used to reduce the withdrawal symptoms. That same sick smell occurred but no one could explain what that is all about.

Keep us informed of your progress.

Bob

Jos,

Glad to hear you came out of surgery ok! I can understand what you say about being "small" and having your skin tug at your staples, I've had a few surgeries and I always have problems with my skin being pulled too tight across the staples or stitches. I've gotten some pretty bad scarring from that. I hope your doctor gets you on the right dosage of pain medicine soon, and that you start feeling better!

Good luck!

-Stefany

I have read these posts with great interest. I have had three back surgeries the last a fusion at L4-L5. The pain never went away, but now three years later it appears L5-S1 is slipping. I am considering the morphine pump since I am apparently tolerant to the Duragesic patch after three years. My question is whether you all still work. Does the pump make you tired? Is it possible to do strenuous work?

Hi Jerry,

In my case, I'm retired but keep active with part-time computer repairing and house/yard work. Prior to the pump, I had constant pain with a lot of lying around and watching TV. Although I tried to keep up with normal activities, I still felt miserable much of the time. The oral narcotics (slow release morphine and hydrocodone with acetaminophen for break-through) helped but they also made me very constipated. Fortunately, I never felt high or unusually drowsy with these medications.

After the pump was implanted and adjusted for the optimum dosage, I was able to stop taking oral medications except for one or two low strength hydrocodone/acetaminophen for breakthrough pain.

Because I had three catheter failures, which is very unusual, I tried not to do strenuous work because I felt that this might contribute to the catheter slipping out of the spinal cord although none of the physicians or surgeons would confirm this. However, my pain level is low enough so that I really feel like doing the heavy, physical activities of the past.

I seem to have some increased tiredness lately but this is a new symptom that I don't believe is caused by the pump. The small amount of medication that's applied directly to the spinal cord should not result in the level of side-effects that is frequently experienced when taking oral medications.

While no one who has suffered long-term chronic pain should expect to be completely pain free after the pump is implanted, it should provide dramatic relief with fewer side effects.

Of course, the expected effectiveness of the pump is determined by the results of the in-hospital simulation test that must be completed before the pump is implanted. The temporary catheter inserted into the spinal cord which is supplied with morphine or other narcotic analgesic will determine if the pump will work.

Please feel free to post any additional questions.

Bob

Hi!

I'm going on 2 weeks with the pump (tomorrow) so I'm not a good one to guage the tired thing. I have 0 energy right now but I think it's from laying around for 2 weeks. I do work full time so I'm used to being more active and don't think it's the pump that is making me tired. Right now I am on no oral meds and my back pain is about a "3". I wasn't able to function or work before without any oral meds. I do work in an office environment that is slightly active (not at all physical though) and I return to work on Monday. I called today to get another pump increase to get my 3 down to a 1 or 2. I think so far this is all worth it. Like Bob said- it takes adjusting so you have to be patient.
I am a little concerned with going back to work Monday. That puts me off 2-1/2 weeks and though I feel a lot better I'm not sure about the 2 hours of commuting each day and jumping 100% right back in. I'm going from doing nothing back to everything, including a wedding out of town next weekend. I'm kind of nervous!

quote:

Originally posted by Bob Engelbardt:
I've had a Medtronic intrathecal morphine implanted for about a year with good results and some initial problems. I'm willing to share my experience and answer any questions for those interested or contemplating this procedure.

Hi, I had a baclofen pump put in on Feb. 7th,so it is still very new to me. My problem is that I am having severe pain in my back and side, near where the pump is located. The pain is like a severe sharp cramp or spasm. I am taking Vicodin and muscle relaxers but I am sick of the pain. Has anyone experienced this type of pain? I don't know if the pain is related to the pump or what? I see my surgeon on Thursday but I am not expecting much of a response from him.

Hi
Just wanted to see how your going back to work went...

Hope all is well,
Jenn

Bob...in hawaii...our medical files are almost twins!....i would like to connect with you and others for conversation and info that pts' share and Dr.s are hesistant to discuss or keep you in the dark...e.g. pump dosing,titration ,concentration, and all that stuff they feel that pts. would not "understand"....i try to be pro-active in my pump care and stay updated, but find myself with blank answers or "don't worry about it" responses thanks in advance for any response, jeffm

Hi Jeff,

I completely agree with you regarding the lack of full information that some patients are provided about their intrathecal morphine pump. This probably stems from the typical situation where physicians don't have the time and/or patience to discuss medical details of all kinds with their patients.

The intrathecal pump itself is a very sophisticated device and the whole concept of applying comparatively small does of morphine or other opioid analgesics directly in the spinal cord is not fully understood by many patients and even some physicians.

One of the postings here mentioned that a newly implanted pump included giving the patient the ability to self access it for bolus (temporary increase) in medication up to 6 times a day. I asked my pain specialist about this but they haven't adapted the procedure yet.

I would certainly like to have this feature available to me so I can eliminate the need for taking breakthrough oral opioids once or twice a day when my pain level sometimes increases beyond which the pump can control. It would be great to have the pump address all of my pain control needs.

Anyway, I' happy to have further discussions with you and others in this forum subject. I'm not a physician nor have I had any formal medical training but, as a retired electrical engineer (age 76 in early April), I have technical expertise in computers and try to keep up with advances in many fields including medicine.

I had a multi-level fusion l/3-S/1 and now have 6 pedicle screws and two rods in my back which was done 4yrs ago and am still having a lot of pain issues and have gone through the medicine cabinet so to speak with the V.A. morphine, cyclobenzaprine etc. and along with pain running down the legs I am having mobility troubles. To make a long story short would it be possible to have a pump such as this applied even though I have had a fusion? I have really heard good things about it and am interested in having it implanted if possible. Thank you for your time.