Chronic Pain

Hi Sheila,

Sorry to hear about your new pain problem but also glad to know that the pump is working for your ongoing back problems.

After three years of relatively low pain levels in my lower back, I've had several weeks of increased pain that's keeping me down and robbing me of good sleep. I've been having the pump increased at 10% increments every two weeks but it doesn't seem to help much. Every so often, I will awaken with little or no pain but a lot of itching everywhere that lasts for a day after which it reverts to a higher pain level again and an overall feeling of malaise.

The itching and very low pain level would normally indicate a narcotic over-dosage but I'll take the itching discomfort over the pain anytime.

The pain clinic has no comment on this strange condition and the pump shows normal delivery of medication (morphine sulphate) so it could be something going on in my body or, possibly, a feeder or catheter problem. At this point, it remains very mysterious.

As for your new pain, my understanding is that the pump will primarily relieve pain in the middle and lower spine as the medication circulates in the spinal fluid. I don't know how effective it will be for pain in the upper part of the body where affected nerves may not be within the spinal cord.

Perhaps your situation may need to be evaluated by an orthopedic physician. If it's a bone or muscle problem, the pump may not be effective in mitigating the pain.

Are you taking any oral medications and, if so, do they have any effect on the new pain?

I wish your the best and thank you for sharing.

Aloha,
Bob

Hi Bob,
I am so sorry to hear that you are having problems. You have been so helpful to many and more than that, a source of hope and information, which is a blessing for all of us. I feel sort of bad for even complaining about something that is so small compared to what you are going through. Bob, you are in my prayers.
I do have oral meds, but I have such a problem with nausea, to the point of vomiting, when I take them. I had made up my mind to no longer suffer with the pain, and to just take the oral meds while I was waiting for the pump to be replaced after it had been taken out due to infection. During the time that I took the oral meds faithfully, I gained nearly 20 pounds from August 18, 2008 until my pump was replaced 1/20/2009. I ate a good bit to alleviate the nausea. I have taken many meds for nausea, but I still got sick because of them.
About the pain in the upper part of my back, I have Aggresive/Progressive Degenerative Joint Disease, and I am losing the disc height in my spine. I will talk to my doctor about this when I go for a refill. When I am on the treadmill, I have no pain at all. But soon after I am done excersising, the pain is back again.
I honestly hate to hear of the problems that you are having. I hope that I am not offending you by mentioning that I am going to begin praying for you. I will pray that your Doctor will receive Wisdom, Discernment and Knowledge of what is going on and a cure in how to stop these symptoms that you are having. I realize that the pump has been around for a while, but I am convinced that there are still some "kinks" that they will need to fix. Because I believe that although it has been being used for a little while to help people, I am sure there are some things that they still don't know about that need to be acknowledged and then taken care of.
Again Bob, you are in my prayers.
Sincerely,
Sheila

Hi Sheila,

Thanks for your kind message. Your prayers must be working as I've had three good days in a row! Lots of itching but that probably means I'm back to getting medication from the pump again. It actually may be too much but maybe I'll adjust to it eventually and the itching will stop. I'll take the itching over the back pain anytime!

My daughter, who is a flight attendant, met someone on her plane who is a pain specialist and he gave her some information as to what may have happened to me over the past few weeks. It has to do with my age (78 in April) and the way the spinal fluid works. He offered to answer my questions via email and when I receive more information, I'll post it.

Hope you are doing better.

Aloha,
Bob

Hi Bob,
I sure do hope that you are doing better. I have prayed and I am hoping that this itchiness can be resolved for you. But I do understand that you will take the itchiness anyday over the pain.
I have a question for you. Do you know much about the PTM (Patient Therapy Management) device and how safe that it is. The reason that I ask is because p/o meds are pretty much a no go for me. I am now on a diet to try and lose the weight, 30 pounds, that I gained from taking them. It seemed the only weigh not to vomit the medicine back up, was to gorge myself with food. I have taken the many over the counter meds for nausea, not to mention the prescription meds, and still had to eat so much, just so that I would not vomit the medicine back up within a half of an hour. Another reason that I am so interested in the PTM, is because I do plan on attending school to receive my BSN (Bachelor of Science in Nursing) and then my MSN (Master's Degree). I am only 39 years old Bob. And after 3 back surgeries, severe arthritis, scar tissue which has grown around my nerve roots, scoliosis and also the Degenerative Joint Disease which is depleting the discs within my spine. I had a very bad car accident in which I factured Vertabraes in my Lumber Spine, which didn't help one bit with the disc space.
Before anyone out there says that I am completely insane for even attempting to go back to work, I have a goal in life...to be a Nurse. I was once a CNA(Certified Nursing Assistant) who help to take care of people who needed assistance and I have also been on the other side of the fence...I have been the patient at a Nurses Mercy. I have taken all of this as a life experience and truly hope to be of great significance to the Medical Community and to the patients out there suffering.
I really do need this PTM because I experience such severe levels of pain after activity.....basically any activity. I am very out of shape due to no excercise because of horrible pain. Now I am excercising, but only walking for now, it seems that I will not be able to enhance to weight tension excercise until I have myself in better shape.
Another reason that I am unable to take the oral meds is because the Doctor has the prescription written up that I am not allowed to drive while taking the medication, which is 5 mg. Oxycodone, which I'll be honest with you, doesn't really touch the severe pain anyway. And I am only 39 years old with a 17 year old son, and a 10 year old daughter which are both very active in sports and in various other activities. I can't be missing out on any of this because I am unable to drive. I fear having an accident and then being charged with a DUI because of what is written on my prescription. I see this as quite a liability.
Another question is this: Right now my Neurosurgeon is handling all of my pain management. I will admit that I only wanted a Neurosurgeon, especially this particular surgeon to perform the surgery on me when the pump was placed. But shouldn't I now be going to a Pain Management Doctor? It is all pretty confusing to me.
My Neurosurgeon is a Trauma Surgeon for brain and spinal trauma, not to mention a spine specialist, also one who does the fusions and various other surgeries that Neurosurgeons perform. He is also listed as Pain Management as he does the Intrathecal Narcotic Pump Surgery, but I will be honest here.....I don't believe that he is qualified as a Pain Management Specialist. And my pain has got to be controlled to go to school and sit in class for the time that I need to. Not to mention all of the lectures I will have to sit through and all of the driving. I have tried college twice before and was so upset and depressed that I had to drop out because I couldn't attend classes regularly due to such severe pain and this time, it has got to be different. And it seems to me that the only way for any of this to be obtainable for me, not to mention a career in Nursing is the PTM.
Bob, do you have any information about these PTM's?
Thanks and know you are in my prayers Bob, I sincerely mean that.
Sincerely
Sheila

Hi Sheila,

Thanks again for the prayers and good wishes. As for my current situation, I had about a week of itching but no pain followed by a night of severe pain and no sleep. The next day, I was in less pain but pretty much out of it. Last night, I went to bed early with little pain and woke up this morning with no pain but lots of itching so things are back to normal and acceptable. The timing is good as we are having a big family visit this week along with my wife's birthday so I want to feel good.

With regard to the PTM, my pain clinic doctor an anesthesiologist, does not approve of the Medtronic PTM because he feels that any immediate or early relief realized by the patient from a small increase in medication would be more of a placebo effect. I tend to agree knowing the physics of the situation. Because of the distance the medication must travel from the pump to the feeder catheter and then up the spinal catheter, it would seem to take at least 24 hours or more for the effect to be actually felt.

I assume that the PTM would provide a small, carefully controlled and temporary increase or decrease of medication - probably nor more than a 10% change. I don't think this would take care of a large increase in pain level and the increased medication would only be temporary. Not having used the PTM myself or contacted anyone who has one, it's difficult to say exactly how it works or comment on its effectiveness.

Interestingly, like you, I also am prescribed 5 Mg. oxycodone to be taken once every eight hours. Also, like you, I find this dosage ineffective for handling a large increase in pain. I find that I must take at least 10 Mg. combined with Tylenol or generic acetaminephen before there is any affect at all. This combination is similar to a common pain medication called Percocet. The danger is not overdosing on the narcotic as much as overdosing on the acetaminephen which should be limited to no more than 4,000 Mg. per day. Exceeding this can cause liver damage.

The pain clinic gave me 30 days supply based on the three tablets per day doseage so my fear was depleting the prescription early when I take as many as six per day that's the minimum to control my pain when the pump isn't sufficiently handling it.

Fortunately, I don't take the stuff at all on good days so I think I'll have enough before the next refill (if he gives me one!).

Oxycodone makes me extremely constipated and bloated so I have to take OTC stool softeners in addition. I really prefer not to take oxycodone at all but I get desperate especially at night when the pain becomes severe.

Your overall situation is quite different from mine as I'm almost 78 and retired so working is not a requirement although I do handle the housework and cooking as my wife has COPD and can't do much of this. Also, I tend to be rather underweight which causes the pump to protrude in my belly. This is not a real problem but it's a bit annoying. I used to have more fat there but I lost it a few months ago while in the hospital for an unrelated condition and I can't seem to gain it back even though my appetite is good.

I'm sorry to hear of your problems with oral meds. Also, I agree with you that a pain management clinic may be better suited for making pump adjustments and prescribing oral meds. I used a neurosurgeon to perform my last catheter revision after two failures caused by slipping. He placed the catheter at a higher level (T6-07) rather than the standard (T10-11) for better support. He also used a thicker material. But his services only were used for the revision surgery and he is not involved with the pump adjustments.

I certainly compliment you on your ambitions with regard to further education and subsequent work in the health field. I can't imagine having chronic back pain while raising a family and also working. I certainly hope you can find a good clinic to handle your pump adjustments and prescribe effective break-through oral medications. It's a bit of a "try this and try that" situation to before one finds the best method for controlling the pain.

I also agree that increased activity seems to affect the pain level as do changes in weather conditions. We live in Hawaii but can still get chilly weather this time of the year especially at night. We don't heat our houses so it does feel cold sometimes when the temperature drops into the 60's or lower at night.

My pain clinic notices an increase in patient visits when our weather becomes cool and unstable.

Do you use a heating pad? I find this somewhat effective. Also, you can purchase a HomeMedics device that you place in a chair and it will massage your back either with a rolling action or a shiatsu procedure. It can even be adjusted to do the shiatsu action in one spot. Some come with heating as well. This can also help during times when the pain level is high.

I guess this post is long enough for now so I'll stop. I hope I've addressed all of the issues you asked about. If not, feel free to post anything I've missed.

Aloha,
Bob

Hello Bob,
I had an appointment with my Neurosurgeon today and he adjusted my pump, although he said that I wouldn't notice the full effect of the increase for 24 hours. He normally won't adjust anymore than at a 20% increase, but fortunately, he increased mine of a little over 40%. When I had the Trial Phase at the hospital, I was the very first patient that had this procedure done at this particular hospital. I do not like to bad mouth hospitals, but the nurses didn't want to cooperate with me very well. If it hadn't been for my Neurosurgeon calling me in at the hospital the night that the Trial began, I wouldn't have even known that I was supposed to tell the nurses that I needed the dosage increased. He isn't at all happy with the hospital, because he is such a caring surgeon and is genuinely concerned about the suffering of a patient due to pain. He actually had back surgery himself when he was fairly young. So, he knows what severe pain is and I believe this is the reason that he is so strict with the nursing staff at the hospitals, that his patients not suffer from pain. When he did call me in at the hospital and asked me how I was doing, I told him my pain level and he told me that I was supposed to ask for increases and after our conversation, he immediately called the hospital and told the nurses that they needed to make all of his patients aware, while going through the Trial Phase, that we were supposed to ask for increases of dosage if necessary and that they were to be asking us of our pain level. After that, the nurses didn't like me because I guess he was upset with them because he made them all aware of this when he gave them the orientation. Lucky for me, he has privileges at various hospitals, not just that one.
I explained how much pain I was having higher up in my spine and he explained that due to an old injury, (arthritis) the degenerative disc (joint) disease and with my scoliosis that this is the reason for the severe pain and also because I have bone spurs from the fractures that I had higher up in my Lumber spine. He also gave me a prescription to go and see the Pain Management Specialist that I used to use for Pain Management prior to the pump and that made me feel better. He told me that they are going to work together to come up with a good treatment plan for me. I have an appointment with him next Thursday. I am supposed to consult with him to get his input regarding my pump being adjusted to a higher rate again and the oral meds and how much of a dosage I will need to take. Hearing all of this today made me feel much better. Both doctors are good at what they do and both good men in my opinion.
And how are you doing with pain? I hope better. I also hope that the itching stopped for you. Wonder if you are by chance having a delayed allergic reaction? I know that it would be very delayed, as you have had the pump for a while. But I just wonder if they need to change the meds in your pump. I have Dilaudid in mine and it helps me more than Morphine ever did. But I am that small percentage that Morphine doesn't do much for.
I am getting things together for school and am very excited, yet scared. I have a fear of not having a good attendance due to pain. I talked to my doctor about this today and he told me that he would make sure that everything would be well with me by then. I am hopeful to do well in school, but more than that, to actually be able to extend Mercy to those who suffer physically and emotionally. I won't be able to do anything to physical though. That is why I am going into Nursing Administration. I have seen good within the healthcare field, but I have seen a good bit of bad. In the Bible, it says that when we suffer, we are then able to share in others suffering and offer them compassion and mercy that has been given to us in our own suffering and that is what I intend to do. I just hope that I will do well. But I know with God's good Grace that I will.
Blessing Bob,
Sheila

Hi Sheila,

Sorry that you had so much trouble in the trial phase at your hospital. I have found that some doctors and others know very little about pain pumps and the procedures requires prior to implantation. Following that, they tend to blame the pump system for any odd problems that may develop because it's the one thing in which they have little experience or understanding.

Some doctors are horrified to learn that a patient has a catheter inserted in the spinal cord - again, lack of knowledge and understanding of this method for chronic pain control. In fact, I read that in addition to nutrition, pain management is not well covered in their medical school education.

I'm happy to learn that you have a sympathetic physician who understands your problems and is willing to provide optimum treatment.

As for myself, I had one bad day and night yesterday - much pain but no itching. Early this morning, I started to itch again and the pain subsided. Other than lack of sleep, I feel much better. You may be right that I have developed an allergy to morphine but I will have to discuss this with the pain management people and, perhaps, my family doctor.

Actually, the itching is a small price to pay for pain relief so I'm willing to put up with it if they can't find a solution. It's just strange that it started only recently. Also why I have several good days followed by a day or so of misery is most puzzling. I'll let you know if someone comes up with a solution.

Best wishes,
Bob

Hello,
Im having a Morphine Pump put in me Friday the 27th I have had 9 shoulder surgeries in the last 3 years and I really would like to know your expierence in this?Please Im really worried about this whole thing!Now my both shoulders are retorn so my Dr does not want to do anymore surgeries!!!!

Please tell me all about the pump Im having it put in me on my left side right above the stomach!!!

Thanks so much Deborah L White

i haven't quite committed to getting this implant, but of course have some hesitation in doing it. i keep reading about how it moves around too much and can come disconnected. doesn't that scare anyone? what if it comes disconnected while you are sleeping? well, instead of using morphine they now have what is called PRIALT which is a non-opioid so no withdrawal symptoms, but they warn about possible psychiatric problems....now that scares me! but i am so tired of having this chronic low back pain. i have had a previous fusion of L5-S1 and they now say the nerves must be damaged and therfore i am still experiencing the exact same feeling i had when the nerve was being pinched. i didn't read through each and every story posted on here, but was wondering if anyone else has this "new" drug in their pain pump?

quote:

Originally posted by Deborah:
Hello,
Im having a Morphine Pump put in me Friday the 27th I have had 9 shoulder surgeries in the last 3 years and I really would like to know your expierence in this?Please Im really worried about this whole thing!Now my both shoulders are retorn so my Dr does not want to do anymore surgeries!!!!

Please tell me all about the pump Im having it put in me on my left side right above the stomach!!!

Thanks so much Deborah L White

Hi Deborah,

There's a lot of information about the pump in this thread. I know it's long and detailed but I suggest you scan the various posts and also go to the Medtronic website to find information you're looking for. (www.medtronic.com).

While any such device and implant procedure can have problems, the vast majority of people who have the pump are very satisfied. Until some recent difficulties with my back and not the pump system itself, I've had over three years of excellent chronic pain control (save for some catheter slippages that are not common and which were easily corrected).

Most implant procedures are monitored by a Medtronic medical representative to assure proper placement. The surgery can be out-patient or involve a short hospital stay.

In all cases, before the pump is actually implanted, you will have a one or two day hospital stay whereby they will do a test to determine if the medication injected into the spinal cord will provide pain relief. The test simulates the pump system itself.

Please post your progress and, after looking at the posts, let us know if you have specific questions.

Bob

Hi jimmeeb,

With regard to your concern about the pump moving around and becoming disconnected, I think this is fairly rare. The device is generally located in the lower abdomen and is anchored in several places. If you have sufficient fat in the abdominal area, you will not be so aware of its existance.

In my case, I lost some weight over the past year and the pump is more noticeable than previously but certainly doesn't move around. I really don't think it will become disconnected while you're sleeping!

You are correct about withdrawal symptoms if any part of the system becomes disconnected but this is rare. A more common problem, that I have experienced twice is catheter slippage, where the spinal catheter, located in the sub-achronoid space, slips out and must be revised. My last revision, that is still holding, involved the use of a thicker catheter located at a higher level in the thoracic region rather than the more typical lumbar area.

I can certainly ascertain that withdrawal is no picnic and it will occur if any part of the pump system fails. Fortunately, the pump itself is very reliable and most problems occur in other parts of the system.

As for your question about PRIALT, I looked it up and and fully agree with you about the possible side effects. They look really scary and seem to me to be worse than opiate withdrawal symptoms which are generally short term.

Most people can successfully manage with morphine sulphate and several other opiates that are commonly used in the pump. Because pump system failures are relatively rare, I would certainly go with the more common medications rather than risk the possibility of such serious side effects listed for PRIALT.

Please note that I'm not a physician and my comments are solely based on personal experience and lay research.

Bob

HI ALL IM NEW AND IM DEBBY IVE HAD SMALLER PUMP IN FOR ALMOST 7 YRS AND DOSE HAS JUST BEEN RAISED TO 7..I TO EXPERIANCE PAIN FROM THE NAGLE MINE IS IN AND ALSO I HAVE NERVE DAMAGE FROM IMPLANT TO PUTTING IN HIP AND NERVES BEING CUT.DO ALL HAVE PUMP IN HIP.MY NEW DR WNATS TO PUT BIGGER ONE WHEN TIME IN STOMACH.IDO NOT TAKE BREAKTHRU MEDS FOR A TIME AND IF NEEDED ITS DARVOCET.I GUESS WHAT I DO NOT UNDERSTAND IF YOUR TAKING MOROPHINE WHY DO YOU NEED MORE MOROPHINE.THIS HAS SAVED MY LIFE I SUFFER FROM 3 BULGING DISCS IN BACK 3 CRAC KS IN SPINE SEVERE OSTEOPORSIS AND DEGENITIVE BONE DISEASE.I AM 46 AND HAVE BONES OF 80 YR OLD.AO I SUFFER ALL THE TIME EVEN NOW OWTH LEG PAIN AND LOWER BACK PAIN.BUT THIS DEVICE TOOK ME FROM BEING IN BED TO BEING ABLE TO WALK AND MOVE AROUND....PLEASE REPLY IF YOU WANNA CHAT.IM GLAD I FOUND THIS COMMUNTITY TO SHARE MY UPS AND DOWNS WITH.....

Hi Debbie,

Since you had your original pump implanted, Medtronic has developed a new version with a large tank to store the medication. This will result in fewer doctor visits for refilling the tank. I have one of these and, because of it's size, it must be implanted in the abdomen.

Your current dose of morphine is somewhat higher than mine (around 3.0) probably because your chronic pain level is higher resulting from your various problems.

I'm glad you don't need breakthrough medication. This means the pump is handling your pain well as mine did until recently.

Best wishes,
Bob

Hello All! I've been reading some of the posts in this forum and would like to join in. I've had a pain pump for about 7 years with Fentanyl. I've worked with 3 different docs and have had both good and bad results. Bob, you seem to have been through the grind! I feel for you.

I was born with a birth defect of my left leg, foot, hip and lower back. I had many surgeries on my leg and foot before I was 3 yrs. old. As life went on, I fell many times breaking my leg or pulling/straining the muscles, etc. At about the ago of 40, my hip started slipping in and out of joint. I could not convience my orthopedic doc this was happening and I had no groin pain so he kept putting me off on doing hip replacement because I was so 'young'. After a couple yrs. of begging, he finally consented. The day following surgery, he came into my room and apologized. Indeed my hip had been slipping in and out of socket because none of the muscles, etc. were connected to hold the joint in place! Another part of my birth defect. That began the long trip to where I am today.

I have disc deformities in my back and many other back and hip problems. However the fentanyl isn't really covering all my pain and it was just increased another 20%. I had the pump replaced on Feb. 11th this yr.. I am beginning to wonder if they replaced the medicine with a placebo! I never see the doctor at pump refills or increases...is it that way with you guys? I finally managed to get an appt. scheduled with my pain doctor on Apr. 1st. I hope he is in a listening mood! I am unable to do anything. Sitting has been a very painfull problem since the first hip replacement surgery.

I also have sleep problems. I can sleep 24 hrs/day! In fact, for about a yr. I did just that until the dr. finally put me on a med to help with that problem. Then, when the pump was increased, the sleeping problem started again. On and on. I could write a book!

I have never been offered break through medication. It seems some or most of you have that. I hope to bring that up with my dr. at the up coming visit.

I would love to hear from all of you! I am disabled from teaching--which I loved. I have lots of time on my hands to chat!

Bobbie

Hi Bobbie,

Thanks for your post. You've certainly have your share of problems especially at such a young age! I'm sorry to lean about your situation.

You state, "I never see the doctor at pump refills or increases...is it that way with you guys?"

Actually, programming and refilling the pump is a relatively quick procedure - programming only takes a couple of minutes and refilling is only about 5 minutes. They use a hypodermic needle to remove the old solution and replace it through a self-sealing port in the center of the pump. They first inject a small amount of anesthetic to numb the area followed by the removal and refilling. It's so quick and easy that you may not be aware of it especially if you are lying down during the procedure.

I doubt they are using a placebo on you as there would be no point to this. If you are not getting sufficient chronic pain relief, they may have to increase the pump output or use a different medication.

I'm surprised you're not getting breakthrough oral medication for times when the pump can't handle the normal pain level.

I hope you have better success in April on your next visit. Your doctor sounds a little like mine - he not very communicative and doesn't seem to relate to how I'm feeling.

He prescribes an insufficient strength of breakthrough medication to handle the pain when the level is high and doesn't seem interested in knowing that I need just a small additional amount (1 1/2 times) of the amount he prescribes to get effective pain relief. He knows I don't take the medication when the pump is sufficiently handling the pain and that I avoid it whenever possible because it ix very bloating and constipating.

Now, it seems that my pump is quite loose and is protruding much more than before. I found that if I keep it positioned above my belt like, I get consistent pain control but if it drops below, then I get the pain again.

This can happen at night so now I wear a belt to bed to keep the pump raised at the high level above my belt line.

It's possible that the feeder tube from the pump is being constricted when the pump drops to my lower abdomen. The only way to confirm this is to let it drop for a day and a night to see if the pain returns. If so, that means the feeder tube is kinked or bent which prevents the proper amount of medication to reach the spinal catheter.

I hate to have to go back to that miserable pain in order to test this theory but it's the only way to tell as an x-ray will not clearly show up the feeder catheter that's looped behind the pump.

If the experiment works, I'll post the results in case others have this problem and could be helped by my findings.

In the meantime, I hope you will soon be doing much better.

Aloha,
Bob