Chronic Pain

Hi Nikki,

It does seem that the pump system implantation is handled primarily by anesthesiologists. This is probably because they are the ones that open pain clinics and their advanced training is in the area of pain management although it's primarily to assist in surgeries rather than actually performing surgeries.

Therefore comes the question as to whether an anesthesiologist is qualified to perform actual surgeries? Implantation of the intrathecal pump system is not a particularly complex surgery and a Medtronic representative is generally present during the procedure but because it involves the spine, one might prefer that a neurosurgeon perform the surgery.

In my case, involving catheter slippages, the anesthesiologist was the one who decided to use a neurosurgeon to perform the third revision and, so far, it has held. Whether or not the initial implantation surgery should be done by a neurosurgeon is open to question although many have posted that their implant surgery was performed by a neurosurgeon.

It may be rather uncomfortable to suggest to your anesthesiologist that the surgery be done by someone else. If it were me, I would put my trust in him or her and hope that there won't be any subsequent problems. From what I've read, catheter slippages are rather rare and only a few posts in this thread have referred to them.

Aloha,
Bob

Hi Lana,

Thanks for posting your experiences with the intrathecal pump system. We're happy that you are experiencing good pain control with the system but, at the same time, we are sorry and concerned about the problems you've encountered.

When it's determined what's causing the numbness around the pump and the return of your pain, please let us know. We all learn by sharing experiences.

Best wishes,
Bob

Hi Nikki,
I will be the first one to admit that I shouldn't be giving you any medical advice...Bob is best for this sort of thing.
But, as far as the kids are concerned, I will let you know how I dealt with it....NOT WELL!!! I say that in all humiliation. When I got really bad, my son who was only 13 at the time and my daughter was only 4 or 5, had to get me out of the bed in the middle of the night while I had raging, screaming pangs of pain and the only thing that helped was if I got out of bed and walked around. I saw what this was doing to my children, so I swallowed my pride, called my Mom and cried, "Mom, I can't do this right now, will you please do it for me?" Be the Grace of God she said yes and still does. My children were much younger than yours though, so I am not giving you the advice to give up your kids, I would never do that. But my daughter was being traumatized by the whole ordeal, it was the hardest on her. My son, such a good boy, helped his little sister so much when I, the Mommy couldn't.
Nikki, I can't direct you concerning the situation with which surgeon you chose, because I have had a Neurosurgeon the whole time....I am at a loss for words, Bob would be better to go to for advice. He sure has been a blessing to so many of us.
Nikki, I will be praying for you and your children.
God Bless,
Sheila

Hi Dena,
I wanted to thank you for your prayer for me....I cried and I cried. That prayer meant more to me than you will ever know.
How about we make a deal....I'll keep praying for you and you keep praying for me.
Thanks again, because right now is a very hard time on me emoionally, spiritually and physically and I am a believer in wholeness in the areas of emotional, mental and spiritual wellness is vitally important in this road that I am walking on....I have found that if all isn't well spiritually, emotionally and mentally, then the pain is far more consuming. I sure do hope people out there don't think I'm nuts, but unless I am doing well in these other aspects that I have mentioned I wonder if there would be any doctor who could help me.
I am not jumping into anything concerning the next surgery yet. I have been praying and believing that God will lead me in the right path and that He will bless me with His Guidance in whoever it is that I chose to do this next surgery.
God Bless,
Sheila

Hi Bob,
I noticed in jsd59's post that she still wears a tight wrap. I also have one, but my Neurosurgeon told me not to wear it after my staples were taken out. Now I question his advice. If I would have been wearing the tight wrap (I can't remember the name for it) then my skin never would have torn and I would still have my pump because the only reason that I got the 2nd infection at the pump site, was because of the rip in my skin, or better put, the hole that was developed as a result of the rip in my skin.
Do you have any knowledge about these tight wraps? I would feel much better knowing that I will be allowed to continue wearing that after I have the pump put in again. There is no possible way for another rip to happen and an infection developing from the rip, if I would be allowed to wear the wrap. I firmly believe that the only reason that my skin tore at the incision site was due to very deep stretch marks because my skin is soooo very thin there. I no longer have the infection. My second infection was much different than the first one. When the results came back from the cultures that they took of my CSF where the infection was in the incision in my lower back and also the fluid that they collected for the culture of the infection in my pump incision, it was a totally different infection than the first time. I can not remember the name of the infection, but I do remember that somebody (can't remember who) explained to me that the infection from the first pump was much more dangerous than that of the 2nd pump that came out. With the second pump, an infection developed because of the open hole (exposure). I believe that an infection was going to happen because of the open exposure. Like the one doctor told me, I need to count myself extrememly thankful that I didn't end up with Menangitis.
Any input would be appreciated.
Thanks Bob,
Sheila

The pain doc I had 4 years ago (an anesthesiologist)believes that only neurosurgeons should implant the pump but where I live now, the pain doc does them. I plan on the pump trial in Jan (due to insurance reasons),tired of 4 years of living in bed on methadone and oxycodone and doing nothing even though I'm comfortable from noon to about 6pm each day---my primary drug intake time, so will give the pump a try, even though Nikki's recent post, like many other posts, scares the heck out of me. This tight wrap, is that worn all the time or just after surgery and I'm thin so want the smaller pump. Also hope wearing jeans/pants will not present a problem near the belt area. Just unbelievable that nearly 10 years into the 21st century and people still suffer like this with no great solution in sight.

Hi Sheila,

I can't really comment on your infections as I've never had that problem with my pump system. My pump never had to be replaced and the only surgeries I've had for that system was replacing the slipped catheters. Fortunately, I didn't get an infection from those relatively minor surgeries.

I may have mentioned this before but I did get an infection following knee replacement over a year ago. It occurred in the incision and I had to go to an infectious disease specialist to get it cured. I took antibiotics for a month and had to remain relatively immobile. If the infection had worked its way into the artificial knee joint, it would have been a very serious problem and require redoing the entire surgery.

Infections are a fairly common problem with surgeries even though the doctors and nurses take steps to prevent them. The operating room is quite sterile but as soon as you leave it, you are exposed to bacteria in the air and on objects which could invade the incision.

As for the wrap, I would agree with you that it might have prevented the pump from coming out. I use a wrap for the seroma I have which I discussed in a previous post.

Best wishes,
Bob

Hi Chet,

Glad that you've decided to have the pump system implanted. Like you, I was taking oral meds. for years before they finally let me get the pump. For me and many others, it IS the solution to controlling chronic pain. Many of us still take some oral meds. for breakthrough pain but, for the most part, the pain is being primarily controlled by the pump.

We hope your trial in January is successful so that you can take advantage of a pain control method that has worked well for many people. It isn't perfect but it's the best that's available until they find something better.

Best wishes,
Bob

Hi Bob,
Thanks for the input. With my next pump, I am most definitely going to keep the wrap on.
Concerning the infections, I have just let that go. Infections are a complication to surgery. And considering how many surgeries that I have had on my spine, I count myself lucky that I have only had 2. As I wrote earlier, with the 2nd pump, that infection was bound to happen due to many reasons. I am just thankful that the infections never got into my pump. I am trying to change my attitude. Although I am pretty sure that I am going to try to get a Neurosurgeon who only does the Intrathecal Narcotic Pump surgery, rather than a Neurosurgeon who does so many different areas of Neurosurgery. I have never meant to "bad mouth" the Neurosurgeon in any way. The attitude that his Clinical Nurse had with me soured me towards the whole practice and I know that I know that I will be stuck with them for the long haul and I am not comofortable with that idea at all. I greatly admire my Neurosurgeon, in all honesty, he seems to be a good, caring man and doctor. My main concern is how busy he is. He has 8 different clinics in which he has no less than 40 to 45 patients at each clinic. He just finished with his residency since 2006 and that is a concern to me. I am learning to be very choosy and I should have checked more into everything before I chose a doctor to implant the pump. The pump literally gave me my life back and I am thankful for that. My main concern is that no other doctor will even be willing to touch me due to the complications that I have had in the past. Not to mention that I would rather have a surgeon who has many years of experience because I do have very deep stretch marks and my skin is very thin due to them in certain areas. And my pump stuck out horribly, and I am not what anyone would consider a little, petite woman. I am not extrememly overweight, but I could stand to lose 15 to 20 pounds.
If I am even given the chance to have the pump again, I will most certainly wear that wrap so that no more skin tears will occur.
Take care Bob and thanks again.
Sheila

There is a pain clinic 70 miles from where I live that I'd sort of prefer having the trial & implant done at but they just called me today telling me they don't do the pain pump for people under 65 years old unless they have cancer---period. My first choice pain clinic who will do the trial & implant (if) is 200 miles away and suggested I call the closer one. They too were surprised at this age 65 deal. My local pain clinic tells me (after me being on oral wacko drugs for years and years)that the pump is sort of an "act of desperation", "a last resort" and wanted me to try Opana. I can live with relatives 200 miles away after my implant(hope the trial works) for a month or two, but driving 200 miles for refills and probable emergencies---troublesome. Just the fact that one pain clinic will only do them for 65 an older and the other one telling me after all these years, "the pump is a last resort", tells me that this pump truly is as big a problem as many of these 400+ posts point out. Yet the pain clinc 200 miles away does them for almost any age. Very very weird different set of standards in the medical profession.

Hi All,
Sheila, I do not wear the wrap anymore. I just wore it according to my docs orders but I did wear like a panty that holds ur tummy in. I found it to be much more comfortable cause otherwise my pump kinda pulled down a little bit and that area would be sore. They definetly helped and were not so bulky. My new pump I got last year for whatever reason does not pull and wear regular underclothes.
A neurosurgeon put in my 1st pump but my 2nd was put in by my pain specialist.
God Bless all of you and what you go through every day. My pump allows me to have an almost norma life but I do take something for breakthrough pain and need to lay down during the day. I also cant do alot of things but I dont let it get to me anymore. I found being on an antidepressant has helped in the early years.
I have found the greatest thing for me is exercise. People use to tell me this all the time and I did not listen, but it has really worked. I started with core strenghening exercise and walking. It caused more pain in the beganning but after a month got better. I now find if I do not walk I hurt alot more. It also helped me to lose weight which I think took some of the pressure off my back.
I am not sure where you guys live but I live in New Orleans and have an amazing compassionate doctor who calls me back the same day. His pump patients are first priority. I worry about the future and will things continue to go well especially after the bad stories you hear.I definetly think you need a doctor that s fairly close cause when you have problems hospitals are clueless and you feel bad and just want it fixed!

Does anyone find where your catheter enters your spine, that it is tender? I have noticed this for a couple months and it is tender if I push on it. It is not red or swollen. My doc says not to worry unless I would have increased pain or withdrawl. Anyone have any thoughts?

In my opinion the almost pain free life of having a pump far outweights the possible problems but I will admit it is still very scary to really think about it.

My kids were little when the pain first started. It was very hard not to be there for them and be in bed so much. My husband was and is a great support. You need someone you can call on. My kids are now teenagers and I have one 11 yrs. They know I have limitations and I have bad days but kids are really resilent and are much tougher then we think. My kids actually feel good when they can help. I guess what I am trying to say is they will be ok. Just concentrate on getting yourself the best you can be. That is al any of us can do.
God Bless, I will keep you all in my prayers. Sorry so long .
Jsd59

Hi Chet,

Any clinic or doctor that won't implant the pump for people under 65 embraces a really stupid philosophy in my opinion. Pain is pain and I don't think younger people should be expected to withstand it any better than older folks. In fact, since most people under 65 still work, it's more important than ever than they effectively control their chronic pain.

The pump is sometimes labeled "the last resort" because it's assumed that the various oral medications and pain control patches don't work sufficiently well or produce too many side effects. The pump is designed to eliminate total reliance on oral medications and patches.

People with jobs shouldn't have to contend with these side effects that can cause fatigue, changes in mentality, slower reaction times, etc. The pump, with its lower medication dosage, does not produce side effects at the same level as the oral medications. Some people will still have to take oral "breakthrough" medications but these are generally at a much lower dose than that required for pain management without the pump.

I think the clinic closest to you is practicing a form of discrimination. They can say that a particular patient is not a candidate for a pump implant but to limit its use in general to a certain age group is completely improper in my opinion.

Unfortunately, I have no suggestions on how to get around this unfair restriction.

Bob, I live in Fargo,ND and we have two large hospitals, the hospital 70 miles away that won't do them for 65 and under unless you have cancer is Grand Forks,ND. I lived in Bismarck,ND for 30 years and was treated there when I had my first surgery and really trust this pain clinic and the doctor I see there. If all goes well after first couple months, the Bismarck doctor thinks they will refill the pump in Fargo.

Hello to everyone,

I have just been reading thru the latest posts and have just a few comments, thoughts, etc.

...When I mentioned in an earlier post that my doctor had me wear a wrap around the area of the pump, it was just after surgery to hold the pump in place until it sort of "set" itself good. At my 1st dr's visit about a week later, he told me to "take it off." The wound needs air to heal also. Ask the doctor.

...If someone has concrete medical advice to explain that a wrap is a good idea on a continual basis, please say so because I too would like to know.

.....Chet, In my opinion,(for what its worth) I would go the 200 miles and get my pump. I used to have to travel pretty far every month just to get my medications. The procedure is usually an overnight thing, then you will visit the doctor several times adjusting your medication,mine was once a week after surgery, then again after two weeks (thats where I am now) But I think sooner than you think, you will be all adjusted and will only have to make that trip once every 2-3 months. You may find out that there may be a pain specialist there closer to you than you think that can do the actual refills of the medication. Just be thankful that you may be getting your pain pump soon!

...Sheila, thats a deal about praying partners! I will be blessed.

.... Also,to Sheila and all, have you ever thought about seeing a physician that specializes in "infectious Diseases?" When I had my last staph infection, the doctor worked hand in hand with one. Because I have had two major staph infections, I am very aware of how easy it can happen. After any kind of surgery, I keep a very close eye on the healing. As a matter of fact, I'm watcing now! If I happen to get one of any kind, I WILL be seeing one of these specialist! I'ts just a thought. Sheila, I probably don't know what I am talking about, but I doubt if your stretch marks have anything to do with anything. (It just don't sound right)

...also,after I had a simple appendectomy, it took 6 months to actually heal. I had a little "hole" that just would not close! It got infected (not staph) and needed anti-biotics. I had to pack it with dressings every day for 6 months!

....FYI..when I had one of my major staph infections, a nurse was coming to the house at least twice a week. One of the things that she did was to measure the progress of the healing of the wound. After the doctor "debrides" the wound, or removes all of the infected part of your body (mine was down, close to spine) the body has to heal from the inside out. Where the fresh meat is & up. Anyway, I learned a very important lesson with their visits. If I ate specifically to heal my body, the nurses would measure a healing! If I ate haphazardly (?) not really focusing on what I was eating, there was NO healing progress! Actual measurements of healing. My husband & I tested it all the time! Now, when I have surgery, I EAT TO HEAL THAT WOUND! This is away that I can help avoid infection also is by rushing that healing process by eating to heal! Watching for every spot on that cut to be scarred over.

....I just want to say, there are good doctors and really good doctors. I don't feel that whether you go to a neurologist or a pain specialist is the question. Its just important to get that REALLY REALLY good doctor. Do your homework. After checking his traning out, ask him/her how often they do THIS particular procedure, how manyetc, get phone numbers. He may be a neurologist but if he seldom does these procedures, I wouldn't want him to do mine!

....So far, my wounds seem to be healing good. I do have a slight concern about the site right at the pump. It seems to be so big. I see the doctor again in a week but if it doesn't go down even just a little bit I may go earlier. Should I be concerned at all?

...Just a note...when looking straight at me (ABDOMEN) you see at my waist level a scar from my leg stimulator. Move over an inch or so then scar from my back stimulator, then go over and not far from my belly button is the new pump! I have become quite a sight!

..Oh, I almost forgot...In my opinion and past pain experiences, I would like to say to the person that has the cage and has not fused yet (I think in almost 9 yrs) and they want to try something else to have it fuse or nuts/bolts tightened or something like that.....Forget it!....Get pain control, wait for better technology! Just my opinion.
God Bless.

jsd59 and Dena,
jsd59, thank you so much for explaining to me about the panties, I never thought of that and this is what I am going to do. By the way, your post wasn't long at all, check some of mine out, people probably think I am writing a book either/or a raving idiot LOL.
Dena, thanks so much for sharing due to your past experiences as well. So blessed to hear that I now have a prayer partner who truly understands. I never had problems with the healing process before, one of the biggest problems is the smoking. We all know that the pump is a fairly large foreign object, and the healing process is critical with these pumps. Smoking interferes with that healing process. I have the cage and screws and had no problems with infections, BUT this hardware doesn't compare to the size of the pump.
My Neurosurgeon wants me to be completely and totally smoke free 30 days prior to surgery. I feel pretty guilty about bad mouthing him when he has been the one that God has used to help me. With my first surgery, which by the way, was a disaster and he even admitted to it....but anyways I was the very first patient to ever have this procedure done at this particular hospital. My Neuro felt really bad about all of the problems that I had but it wasn't his fault. #$%^ happens...right? I am just so thankful that I didn't contract Menangitis which would have killed me.
My Neuro is going to have a Plastic Surgeon to close me up with my next pump surgery. I have experienced a whole lot of anxiety and fears concerning this next surgery, since it is the last chance that I will ever have for the pump again. I am finding out that no other doctor will even touch me because of the problems in the past. So, I have to stick it out with my Neuro. It just REALLY bothers me that he is constantly changing his mind!!! I did have a surgery date of August 20th and he called me on the Friday before that date and told me that the Plastic Surgeon who he wanted to assist in closing me up, refused to even participate in the surgery. The Plastic Surgeons policy is that his patients have to be 30 days smoke free in order for him to operate or to assists in surgeries. My Neuro told me on the phone that we could go ahead and do it the 20th, and if I chose to have it done then, that he would be the one closing me up. BUT he told me that this would be the very last time and that he was worried that history would repeat itself due to my smoking interfering with the healing process. He told me that if I decided to wait the 30 days, then he would get me in for surgery ASAP and that the Plastic Surgeon would be there to close me up. I guess this Plastic Surgeon is fantastic. So, I chose to wait the 30 days. When I emailed his Clinical Coordinator, she gave me a totally different story. I asked for a surgery date because my PCP is prescribing my pain meds and he wanted to know what my surgery date was. Well, the Clinical Coordinator told me that my Neuro said that after I was smoke free for 30 days, then he would reconsider doing the surgery. I CAN NOT figure out if my Neuro changed his mind, or if it's the fact that this woman likes to upset me because she doesn't like me at all.
I have chosen to be more than 30 days smoke free because of the chance of losing the pump forever. That frightens me more than anything else.
Thanks to everyone for the input and this has forum has been such a blessing to me....all of you have been a blessing to me....thank you Bob.
God Bless All,
Sheila