Chronic Pain

Hi jsd59,
I am very curious to know if you are nursing now or not. I have had 2 prior pumps, and I have had to have them taken out due to infection. Basically what has happened with them in the past, is that I WAS a smoker and I never healed properly. With my last pump, my skin ripped and created a hole that wouldn't heal back up which became infected and had to come out. My Neurosurgeon has been the one to perform the pump surgery for me and when I asked him why my skin ripped, he explained that my incision hadn't even healed up, and that was 5 months after the installation.
Dilaudid, at double concentration, is put in my pump and it helps me so much with pain. And I used to be a CNA (Certified Nursing Assistant), but my goal in life is to become a Registered Nurse. I was very upset when my last pump came out because I was supposed to start school July 19th and the pump was taken out June 2nd.
Are you still working as a Nurse? Everyone seems to believe that I should not ever try to work again because I am currently disabled, but while I have the pump, I KNOW that I am not disabled. I am only 40 years old and I really want to go back to work badly as a Nurse. I know that I wouldn't be able to do the work of a CNA again, due to the heavy lifting, but there are a wide range of jobs when it comes to the Nursing field. Just because I am a Registered Nurse doesn't mean that I would be lifting. I will have to chose a Nursing job that doesn't involve heavy lifting.
I would appreciate your input.
Thanks so much,
Sheila

Hi Chet,
I am also on the Opana ER and the Opana IR. It has been quite effective for me, yet very expensive. I literally switched my insurance provider (Medicare Supplemental Insurance) to an insurance provider who would pay for the medicine. The price of the medication itself is extremely high. If you aren't receiving adequate pain relief from the medication, then you may need your dose increased. It has helped me greatly. I take the 30 mg Opana ER and I take 10 mg Opana IR every 6 hours and it has really helped me. I have also been on Oxycontin and I have had better pain relief with the Opana. I would try and stick with the medication, but notify your pain doctor concerning your dosage. I was started out with the Opana ER 5 mg and they took me up to Opana Er 30 mg.
I know that once that the doctors got my dosage correct, that it was better pain relief. But, it did take a little while to get to the 30 mg. The only problem that you may run into is that the higher the dosage, the more expensive. When I was taking the 20 mg, 60 tablets were $433.00 and that is just outrageous. I also take Soma 3 times a day and I use the Lidoderm patches.
I am having my pump put back in very soon and can't wait for this to be done. With the pump, the pain relief is awesome and I only required like 3 Lortab 7.5 3 times a day. While I had the pump, I had double concentrated Dilaudid and it helped me so much and no side effects at all. I couldn't even tell that I had liquid Dilaudid in my pump
I hope this helped you out.
Take Care
Sheila

Hi jsd59. Glad to have you in this forum. Your experiences with the pump, both negative and positive will be welcome.

I started this thread some time ago and it's been useful for many who have posted or are just reading the comments.

Aloha,
Bob

Sounds like a big deal, this pump. I broke S-1, L-5 and had separations on both sides of my pelivs 21 years ago as a result of an AVA. Pain became unbearable in mid-to late 1990s just as the auto insurance company started to refuse threatment for root cause. Pallative care only, at least for several years until I got state Commissioner of Banking and Insurance to force my auto insurance carrier back to threatment of root cause. But I'd allready been on oxycontin for years by then, making treatment more difficult. And I'm still on some for of oxycodone at fairly high levels. Opana, avenzia, et all have come and gone with only the pain remaining. At least there's some level of controlwith oxycodone 15 mg, q 3 hr. As work increases this fall, I'll go to 30 mg q 3 hr or go back on oxycontin 60 mg q 8 hr.

I've refused all surgery, including massive fusion of lower bank and SI joints as drs. at U of P in Philly Drs recommended. I went to HSS in NYC instead and have been working with radiofrequency denervation with some small level of success. But not enough. My Dr. at HSS said the pump is a "last resort" and I can see why.

But the last resort I've thought of from time to time is indeed more severe than that. I don't even want to think or talk about it, but the thought does pop up every now and then.

So I need to know the entire skinny on the pump in the next three months or so. I'd appreciate any info, opinions, etc. Just listening is a comfort, so feel free to write. All I ask is that everyone keeps the conversation civil. I tend to ramble, but this is recreational writing for me. Or call it theraputic, if you will.

It's after 1 a.m. and I have other work to do and a dose of dope to take. (dope as in Woody Guthrie's "How Can and Poor Man Stand Such Times and Live." Not actual dope. I'm not there. At least not yet.)

PS-can anyone tell me who spell check works on this foru? dang computers.

Hi Mike e,

There's no question that you've been through the mill! The pump is often called "last resort" because it's not generally provided by the doctors until the patient has tried the various oral medications all of which, as you so well know, have unpleasant side effects. From what I see in your post, you are on relatively high doses of oral narcotics to control your chronic pain. I assume that you would prefer to eliminate the side effects and that's what the pump does by eliminating the need to take as many (if any at all) oral medications.

Most of us in this forum have had failed back surgeries or prefer to avoid surgery because it so often does not eliminate chronic pain.

Because there is a lot to absorb when considering the pump, I suggest that you look through the posts here and search the Internet under "Intrathecal Morphine Pump".

Please note that most people who are completely satisfied with the pump will not post in this forum. Therefore, you may see an inordinate number of posts regarding problems but they are a small percentage of the number of people who use them and are happy with their performance.

I've had my share of problems with the pump system (not the pump itself) but these were due to the way my doctor placed the catheter and they were finally corrected by a neurosurgeon. So I am very satisfied with my pump now as it controls almost all of my chronic back pain. I do occasionally take what's called breakthrough medication (oxycodone) along with Tylenol when the pump doesn't provide almost 100% relief. If this pain continues, I can get the pump dose increased by the doctor so I don't have to take the oral drugs.

The device itself lasts for 6 years and needs to be periodically refilled depending on the pump medication dosage. This is a quick and painless procedure.

If you have any specific questions on the pump system, please post them here. If I don't respond, others will. Please know that everyone who follows this thread sympathizes with you as we've been through some or all of the experiences you posted. We all wish you the best and hope that you soon will be able to better control your chronic pain.

Bob

Hi Shiela and Mike E,
No Shiela I am not nursing, but yes there are many things that nurses can do. It took awhile for my pump to get where it needed to be. I am fairly well controlled on most days but as we all know when there is a bad day it is bad. I did not and still don't think I could work and raise a family. I hope when my kids r out of the house I can go back to nursing of some kind. I need to work on getting my license back cause i put it on hold and now it is a pain in the but to get it back.
Good luck and go for it.
jsd59

Mike E,
Sorry didn't mean to include you in my email to Sheila.
The pump was put to me as a last resort but it has been the best thing ever. I have had it for 7 years and would be glad to answer any questions. I have had a few bumps in the road but none of the big time stuff you read. It has changed my life.
Good Luck, Jsd59

Hi Bob,
I have been silent, although engaged, for a few months now. Mostly that happens when things are going well. Glad to see you are still holding the "fort". For those who do not know me, I have had my pump for 1 and 1/2 years now, and so far so good. Some frustration in the beginning getting the dose right, but pretty well cruising otherwise. I, too, am willing to answer questions and help in any way I can. What Bob says is true about people forgetting about the forum when they are doing well. I try to drop in once in a while. My pump is putting 01.49mg/per day into my spinal fluid. My brain is clear, in fact I am back to writing and researching my book, which is a great feeling. I have moved from the dense "oral med fog", into a place where i can think, care for and about others, and handle most of my own medical problems again. This forum was, and is, a great help to me. Thanks, Bob, for all you do. I will help in any way I can......Linda (stepstone6)

Hi jsd59,
Thank you for answering my question. I am going to pursue a nursing career. I understand what you mean about raising a family as well. My son, now 18 is pretty self-maintenance and my daughter who is 10 years old, is used to "Mommy" being in pain. When I was 6 1/2 months pregnant with her, I fell carrying a large bus tub (waitressing) of pieces of the ice cream machine that I had just torn down to clean. My feet went completely out from under me and I fell straight on my butt. My daughter was a miracle. Because of the fall, the cord was wrapped around her neck 5 times and during labor, her heart stopped 3 times. When the nurses saw on the monitor that my daughter was in distress, within a matter of minutes, those wonderful nurses had me prepped and ready for the C-section. The doctor who did the surgery told me that it was a miracle that my daughter survived. Not long after I had her, I finally broke down and went to the doctor about the horrible pain shooting down my legs, into my toes and also the back pain. When they got the results back, it showed that I had 4 herniated discs, all because of the fall.
My daughter, Sarah, has grown up seeing her mommy in pain. And when I had the pump before it had to be taken out, she was so happy. She told me, "Mommy, I don't have to worry about asking you to do things with me anymore so that you don't hurt your back worse". My son and daughter both are very understanding. They both know that we can't plan to go out shopping, dinner and a movie all in the same time frame. They know that we go out to dinner, then go home. Sometimes I feel guilty but it hurts them worse when I feel guilty. I have been blessed with concerned children.
As I wrote, after this next pump surgery, I am going to go to school for nursing. I am very fortunate just how much the pump helped me. And I am only 40 years old and I want my children to learn by how I live, that NO MATTER WHAT OBSTACLE THAT THERE IS, that a person can overcome.
Since you have been an RN and understand all that there is to it, do you believe that you would be able to do nursing? My husband is a floor (Med and Surg floor) RN at our local hospital and he is dead set against me becoming a nurse. He has been a nurse for 23 years (I think) and he is trying to explain to me that I could further injure myself and that is a huge concern to him.
Please let me know what you think.
Thanks
Sheila

Hi Linda,

Thanks for your kind words and for stating your willingness to continue sharing in this forum thread. In addition to providing information and advice for those seeking relief from chronic pain, the forum is a place for some people to "let off steam" when they encounter problems with equipment, medications and personnel in their quest to obtain pain control.

All of us, who have or had chronic pain, can understand and sympathize with those who continue to suffer with this miserable and sometimes debilitating affliction. Knowing that others have it worse than we do may help in dealing with our own situations.

Someone once said to me, "Smile! Things could be worse." So I smiled and, sure enough, things got worse. (Not really but I though this was funny).

Bob

Hi, not sure if I am logged in right but this is DENA. I just want to thank you all again for your prayers and encouragement. Just wanted to update you all.
...Went in Aug 6th for the"trial pump". I am having the pump put in the day after tommorrow Aug 27th.
...While in the hospital, setting up date for the pump to be put in, the Dr explained to me that he wanted me to try to go off all my meds before surgery. We all know how hard that is)
...He explained that, a percentage of pump placements develop scar tissue or a buid up at the catheter( I think) if medications are introduced too quickly.....so a slow increase of medications will be more cautious.
...this build-up will grow and eventually press on nerves that will produce major problems.
...Since Aug 6th I have cut all pain meds except break-thru Roxycodone 30 mg, which he said was okay as long as I didn't pop them like candy. It has not been easy, but I shared all this to let you know what I have discovered about the stimulators.
...To those that don't know, I have two stimulators. One is for my legs, the other is strictly for back pain. I had stated before that I thought the leg one felt okay for therapy but the back one was of no use at all. I wanted it OUT!
...When I started to go off my meds, I became somewhat frantic because the pain became UNBEARABLE and was starting to Panic. I tried anything I could get my hands on except pain meds.
..I turned on that back stimulator and "PRAISE GOD" that thing really does work! It has been on 24/7 and I think it is the only way I could have come off of all my meds in just such a short time. One time I turned it off, just to test it, and it was horriffic. I turned it right back on.
..I think the reason I did not think it worked before is because my pain meds were not allowing me to sense the difference it made.
...So I thank you all for the advise and prayers. I'll keep you all informed.
I feel blessed now that I have the stimulators and will be getting the pump also. God Bless

Well I have to say things have been fine with my pump, but of course something else had to creep in there and screw it up. My Doc went to a seminar about Vitamin D, decided to do a blood test and I am so low on Vitamin D that if I were a kid I would be diagnosed with Rickets. The symptoms of this can mimic several diseases including MS, Chronic Fatigue Syndrome, Depression, Deep Bone Pain, and many more. Check it out on the Internet. Anyway, he put me on a Vitamin D Supplement for 8 wks, one pill per week. Do not try to do this on your own, in fact it is a prescription, anyway.
I am having less pain after only 4 weeks of treatment with this. I can tell because I am using less PRNs. Something new, to me, that I thought might apply to others. They say it is more people above the 45th Parallel, but since a lot of us spend a lot of time indoors, I thought it was a good thing to pass along. I don't know how long I have been deficient, but I am anxious to see how I feel once we get the level up where it belongs. It is a simple blood test, but must be ordered or they don't check it. Vitamin D, like all the oil-based vitamins, can be toxic if overdone. My Doc has been my family's Doc for 14 years, even before my accident on 2002, so he knows a lot of history and familial traits. But we know all those things about ourselves if we think about it enough. It helped me enough so far that I thought it was worth bringing up here. Have you heard about this already, Bob? Later, Linda

Hi Linda,

I'm aware of the Vitamin D deficiency in some people. Here in Hawaii, we are frequently exposed to the sun so it's unlikely that many of us would be deficient. However, I have read that some people have a deficiency despite sun exposure and that it's a good idea for many people, especially those who use a lot of sunscreen, to take vitamin D supplements no matter where they live.

I'm not familiar with the prescription version but the OTC supplement that's readily available contains 1000 Mg. of D3. I read where it's important to use the D3 type which is taken once a day with a meal. I use just to be on the safe side but I probably don't have a real deficiency.

In any case, I have not notice any effect on chronic pain levels since I started taking the supplement. This is not to say that your experience with it is invalid but we do need to be aware of the placebo effect. Even then, if the placebo effect is reducing the pain level, then that itself is valid.

On the other hand, you are probably getting a very large dose of the vitamin, perhaps in a special form, so we really can't compare it to taking OTC supplements. If the large does can affect pain levels, you may be on to something important. Can you provide the name and strength of the prescription for vitamin D you are taking?

Bob

Hi Dena,
First of all, I want to say PRAISE GOD!!!!! I won't apologize to anyone for saying that either, TO GOD BE THE GLORY!!!!
I want you to know Dena, I kept you in mind while you were going through your trial and off and on the "Spirit" has reminded me to pray for you. Now I know why after your post.
I am soooo happy for you.
Pain Meds can get pretty tricky after a while. There is a diagnosis of Hyperalgesic Opoid Induced Pain. Sometimes this happens to people, not all people, but some like me and you. And sister, I am right there with you knowing how hard it is to get off the pain meds. I have been checking every day and I guess that I must have missed your post. Please don't think that I have forgotten you, because I haven't. I receive all notifications via my email and it just showed up today.
I am still praying for you and I will continue to check my email to see how you are doing.
Take Care Dena,
Sheila

Sheila, I am not saying my pump is perfect. I still do have bad days but not horrible. Its more like I have to lay down and rest and take a Loratab. But mainly laying flat for a hour or so. Although my fusion is not there my hardware is still solid. I found a new neurosurgeon who does a different approach but as we know anyone who has had back surgey cannot imagine consenting to that post op pain again.
It depends on if you can hurt yourseld cause you will have to go through school which means clinical on your feet, long hours of homework and studying sitting down. Does those things increase your pains? It does mine. Yes I am sure you can find nursing work that does not involve strenous work but can you handle the sitting , standing and long hours. I have friends who have back pain who work in a clinic or in NICU with babies. I understand your husbands concerns. My husband worries about me too and is very protective. My kids also realize I have many limitations and frquently have to go to lay down. It is so much better with the pump. I also have found these last few years exercise 3 times a week has made a tremendous difference to. I was 39 yrs old when I fell and I just turned 50 UGH but I have learned to at least try and do the things I want if I failed at least I tried. Good luck.
This is a wonderful web site that I cannot believe it took me so long to find it. God bless all of you. It is so good to beable to talk with people in the same boat. U realize as Bob said someone is always worse off.
Sincerely, jsd59
Sorry so long