Chronic Pain

Hi Bob and Dena,
It's Sheila and there is one more thing that is sort of bothering me that Dena wrote, no offense Dena but you need to know that you have done nothing wrong in God's eyes. Sorry Bob, but I honestly can't sit back and read the words of a good woman, like Dena, blaming herself....as if she has deserved this.
Dena, you must be very strong...as a Christian, that's all that I can say. You have done nothing wrong. I have gone through all of these feelings and believe me, we all suffer in one way or another.
This pain pump is an answer to prayer and you and Chet will both see true life soon...I believe this.
Sorry Bob, but I can't sit back while some woman blames herself in the eyes of God and thinks that she has done something wrong in the eyes of God.
Sheila

Sheila,Bob and all,
I just want to explain that I am not blaming myself for things as much as I think some of us question as to whether we heard from God correctly. I pray and seek God to help me come to the correct decisions. If I do happen to make an incorrect one I have the assurance that God forgives me, understands and works on my behalf to turn it to good.
But, meanwhile, I may be living with the consequences of a bad decision. Through all this, yes I can be an example or inspiration to others, but I try to first make the correct decision through faith,and hearing from the Lord. Then I can advise correctly also and save someone else from the same wrong path.
My latest and most urgent question and concern is this: I have two stimulators inside me. One is for my back and the other is for my legs. I thought that the pump was going to handle my pain so I mentioned that the Dr would be taking them out (at least the back stim) He says "no" I do not understand why I need the stimulators if I have the pump. I am trying to decide whether or not I "STRONGLY" request that at least the back stim be taken out when the pump is put in. I do not understand why I should go through an additional surgery later to have it out? Does anyone understand? Does anyone else out there have both back stimulator and pump? Can anyone see why I would need one if the pump is so effective? I have had two major staph infections after surgeries that took about 6 months of healing each, so I'm a little apprehensive. It just doesn't make sense to me. I maybe could see keeping the leg stim, but why would there be a need for the back one?
I'm sorry if I seem to be rambling and going on & on......Sure would like to hear some opinions about stimulator. thanks

Dena,
You aren't rambling at all. I remember when I had my first trial with the pump, there was a man who was having it as the same time as myself and he also had the stimulators for pain. But the stim was for radiculapathy (forgive my spelling). Radiculapathy is pain that radiates down limbs and this is something that the Intrathecal Narcotic Pump isn't any type of treatment for. The Intrathecal Narcotic Pump will take care of your pain in your back, but it is not going to take care of pain that radiates, which is what the stimulator is for. I have known people with both and they seem to be doing better than ever with both devices.
All will be alright.
God Bless,
Sheila

Hi all,

The recent posts are very interesting and I just want to make a few comments. Sheila is correct about the differences between the stimulators and the pump. They each work in an entirely different way and are designed to reduce chronic pain from completely different causes.

To put it simply, the pump places a small amount of narcotic medication directly into the spinal cord in which the nerves that cause back pain are located. The stimulator is an electronic device that places electric pulses into wires that are located near the nerves which are causing chronic pain below the spinal cord, usually the legs.

I personally have no experience with and have not researched the stimulator so I can't comment on it with any first-hand knowledge. I do have a TENS ( Transcutaneous Electrical Nerve Stimulation) unit which is similar to the implanted stimulator in the way it works but it's used externally with sticky patches attached to the skin. The electrical pulses seem to mask the pain and cause some changes in the way the nerves react.

With regard to the sexual matters some of you have posted, there's no question that chronic pain and some medications will reduce libido in both men and women. Furthermore, back pain can seriously restrict the physical positions a person may need to have sex. I must be frank and somewhat graphic now so I hope no one is offended.

Certainly, someone with lower back pain can't comfortably have sex with thrusting in the typical missionary position. If he or she takes a lot of oral pain medication to reduce or stop the pain, then the medication itself can reduce libido so one partner no longer wishes to engage in sexual activities.

The best solution is to try other physical positions and, in some cases, attempt to satisfy one's partner even if these is no desire in yourself. Sex doesn't always have to be restricted to the typical positions and procedures we were taught or learned to use. And it's not always necessary for both partners to be satisfied. WebMD has some excellent articles regarding sexual matters that can help in this regard.

While on this subject, it's well known that sexual activity is an excellent pain reliever even though it's only temporary. Sometimes the combination of the pleasure along with some pain relief is better than any medicine or pump can provide. We may have to be flexible and innovative to engage in sexual activities when one partner is suffering from chronic pain but it's a very caring and unselfish thing to do for that person even when strong desire is lacking.

Bob

Does the pain pump affect your wearing of jeans or Dockers pants or? My trial is in January but thinking ahead---seems like the pump is implanted about where your belt line is. Certainly can't be below there and yet it can't be much above that line. Would hate to have to start wearing pajamas or pants 4 sizes too large. A post by a lady on here about page 12 (of 43) talked about wearing maternity clothes?

Hi Chet, My pump is placed just below the belt line and I have no problems wearing jeans. I have not had to change the size of my clothes! This is my 2nd pump. I had the first one for 7 yrs. and had that one replaced with a larger pump this past Feburary.

Hope this helps.
Bobbie

Hi, I have been reading the comments made from Bob and Tina. They have been very informative. I am from Upstate New York, as is Tina, and am looking into the pump for my 86 year old mother. Our primary care physician just mentioned it to me this week, and am looking for a doctor who has expertise in this area around upstate New York.

Pump planted below the beltline? I'm 6'4"+ tall and 170, don't see where they could put it below the beltline without causing clothing problems, and would think that a pair of jeans would keep yanking it downward as the pump will be protruding (more in me).

Hi Chet,

I think they will implant it wherever you have the most abdominal fat. When I had mine placed over 3 1/2 years ago, it did not protrude; however, I've since lost some belly fat and the thing is now very visible and protrudes substantially.

Compared to you, I'm only 5'9" and weigh about 140. From your height and weight, I can tell you are slim similar to me. I now have a problem with my belt line. Generally, I place my belt below the pump which pushes it up into an area where I have a bit more fat. It still protrudes and remains an annoyance but there's not much I can do about this.

I have the larger pump with the bigger tank which results in less frequent refills but you might ask your physician if he or she would consider implanting the older model which has the smaller tank and is less thick. If it's available, I may consider this for myself when I have my pump replaced in a couple of years (at which time the batter will be dead). Of course, this means more frequent refill visits.

The frequency of refills depends on the dosage of medication being dispensed so if the pump is releasing a large amount of medication and the smaller tank version is implanted, refill visits will be more frequent which could be an inconvenience.

Had my first appointment this AM at the other hospital's pain clinic. The one I've been going to for 4 years did the stimulator 2 years ago(waste of time) and would do the pain pump in a minute, but what a surprise today at the other hospital. The doctor reviews my records and says, "your not on that much pain medicine (15 mg methadone, 35 mg oxycodone daily and in bed all day). Told him I've been in bed for 5 or 6 years and tired of doing nothing. Don't want to live out my life like this. If I want to do something/go somewhere and be out of bed for 3 or 4 hours I need to triple doses. He said, the pain pump is a "last resort". He gave me a Rx for 10mg of E.R. Opana 2 a day, and 10mg of immediate release Opana 3 a day and wants me to stop completely the other meds. Can't imagine what the withdrawal would be like after 4 or 5 years now. He actually said some negative things about the pump even though he had large medtronics brochures on the wall. So, I'm going back to the other hospital's pain clinic, but just don't trust that doctor implanting the pump. PS I have good insurance plan w/ BC/BS and my out of pocket each month for the Opana would be $396. I went there for one reason and one reason only---the pump---and got shot down. Also, he said the 4 or 5 day trial is no better than the one-injection and explained why. BS

Chet,

Bummer that the doctor chose this time to chat with you about the type of drugs you are taking. Before the trial study would have been a better time to have this conversation.

If you have taking the same medication for 4 to 5 years then there is good chance that your body has become used to the medication and you need to take a drug holiday. You would need to take something else for a month or two and then you could come back to it. Regarding the Opana ER, you discovered the downside of it with the expense. I found that this medication did not work as well as the Oxycontin I was taking. Also, I needed to take more of the Opana ER than I took Oxycontin. It wasn't equal in strength. I would be open to trying different meds. I am very surprised no one has suggested a drug holiday. Google .....Drug holiday and you will get some suggestions.

I don't understand why the doctor would shoot down the pump though.

Good Luck !

Dena:

I have both a stimulator and pump. The stimulator as you know is there to try to fool the brain into thinking the pain isn't there. It causes the tens like feeling in places programed to elimenate the feeling of pain. It does not get rid of the pain. The pump delivers medication to the actual area of disability in the spinal cord, the nerves that are stimulated by the stimulator cannot respond to the medication, I too ramble, but basically they are completely two different animals. I would be scared to death to be without the pump, and greatly appreciate the stimulator when certain areas programmed nerves go into severe pain reception. If you are getting results from your stimulators, do not let them remove them, but have them do the trial of the pump, to see if it helps. I found it to be a gift from God. Good Luck

Would be interested in anyone's experience with Opana ER and Immedediate Release Opana, taked at the same time, I was recommended 10mg of the ER twice a day and other one 3x day. Help. PS impossible to take a drug holliday, unless I let my wife use the old-baseball-bat-over-the-head every time I come too.

Keep in mind that a drug holiday does not mean you stop taking all drugs. You take a different type of drug. You are on a holiday right now since your doctor changed your meds. Unfortunately, it sounds like it isnt kicking in yet.

Best of luck

Hi, I am new to this group but I am glad to finally find someone I can share my thoughts and questions with. I have had an interthical pain pump since 2002. I am on my second. It is the best thing that could have ever happen to me. I was a nurse and had back surgery, it failed and I got the pump 4 years later. I am happy to share any knowledge I have gained and to read about other peoples experiences.