Chronic Pain

Chet,
I agree with Dena, travel the 200 miles. I travel nearly 2 hours, but I don't know how many miles that is. I was fortunate that the Neuro who did my pump, didn't base his decision on my age (I am only 40), but he bases the decision on a patients diagnosis and also pain level. He had to have a back surgery when he was very young and this influenced him not to place an age limit on the need for pain relief or Intrathecal Narcotic Pump.
Dena is right in that you will only have to go 2 to 3 months to have it refilled and you could always ask them if they would consider doubling or even tripling the concentration on the medicine that you require in the pump for adequate pain control.They did this for me because of how far away that I live. They adjusted the rate and I didn't have to travel nearly as much.
Checkout hotels and their rates.You could always check on hotels and hotel rates, at a half way point, this way you don't have to ride in a vehicle for such a long period of time. I would also ask the doctor if he/she had any affiliation with a closer hospital, just in case that complications may arise.
Good luck to you.
Sheila

Sheila,
I was just remembering that my doctor asked me whether I wanted the pump location to be put in the front or back? After he asked, he just quickly made the decision to do it in the front and stopped talking about it.
The thought just occurred that if you think the possible problem is your thin skin/strech marks etc. maybe this could be a thought. I know also that the last thing you need right now is another thought and theory on it (tee hee) sorry, but I had to mention it. Mine seems so big. Do you think it is still swollen? (2 weeks)

Hi Dena,
Thanks for the info about putting the pump in the back, I am going to mention it to my Neuro.
About the swelling....I would ask Bob. Bob has a wealth of knowledge when it comes to the pump, and I don't. I only know of my own experiences.
I noticed in one of your posts that you have had problems with healing in the past. Maybe this is something that you need to make an appt for.
By the way, you mentioned using food as a tool while in the healing process. Is there a website that I could possibly go to concerning this? That thought has actually occured to me recently. And would you happen to know of a supplement that I could take before and after my pump is put in again, that helps the healing process?
Thanks Dena
God Bless
Sheila

Hi Sheila,

I've near read nor heard of implanting the pump anywhere but the abdominal area. Where would it go in the back? There is relatively little fatty areas other than the buttocks and it wouldn't be put there because sitting would damage the pump and it would be very uncomfortable.

The belly area is best because most of us have some fat there and it's less likely that the pump will be damaged because there's a lower probability of encountering some external object. We tend to protect the frontal area of our body from any outside pressure because it's so sensitive. In contrast, we sit on our buttocks and lean our backs against objects such as chairs so a pump implanted in that area could be damaged.

Because your doctor answered his own question to quickly, I'm wondering if he was just kidding?

Bob

I meant that my post above should be addressed to Dena instead of Sheila. Sorry about that.

Just want to add a comment or two about my earlier post on nutrition in the healing process. We as americans have had nutrition crammed down our throats all our lives. After a while, we sort of stop really hearing it. When my husband and I did our little testing (last post) while I was healing....ours eyes were open to the importance of it all and now, we really do hear & understand the nutrition msg.

.....I have all the nurses info packed away, but I do remember the following: (when healing)

......Eat a High Protein diet
......Do not worry about gaining weight at this time. This is the time to focus in on HEALING.
......Eat fresh fruits, vegetables, the usual good stuff.
.....I would make sure I had a well rounded vitamin/mineral supplement but don't go too overboard. I would especially have a good vitamin B complex, vitamin C,E is very important
.....The vitamins are just what I remember that I personally need. We all probably vary in these.
.....I think the most important thing I remember is to eat a HIGH PROTEIN DIET. Eat small meals thru out the day. I remember in addition to my regular meals, I had chicken in the fridge and when I would think of it I would open it and grab a piece or two and swallow, just like it was a pill that I had to take as I am not a meat eater. I also ate eggs,nuts,tuna fish, other fish easy to fix. I ate, like I said, I had these prescriptions to take and I had to eat them. My daily job was to get that protein in me!
.....Drink lots of water (even if it has sugar and flavoring in it, just drink! I have a hard time with water, but it is very important. I've learned sodas (dark colored) steal you of your health especially your bones. Milk, cottage cheese...sooo much more!

....If you go to the top of the page where it says "search", enter"nutrition,vitamins,diet" it will direct you to sites where the reaL experts who know what they are talking about are located.

.....As I have learned, Eating healthy is not just a tool, as I think I called it earlier, it is essential every day but especially when you are healing from a surgery. Well, sorry to blab on so. God Bless

Hi Bob.............I think your right about the pump location. It sounded wierd to me too (thats why I remembered it) My doctor did and does implant the stimulators in the rear (buttocks). I think if he was serious, that may have been what he was thinking. I'll have to ask? I don't think he meant "the back" I just thought that if Sheila's stretch marks were a problem, maybe another location could be a possibility.
..When my doctor implanted my first stimulator, he put it in my right upper buttock area. He explained that is where most people have them. When I told him that I didn't like it there, he surprised me by moving it to the front when he implanted the second stim. So now they are both in the front, right hand side of abdomen. In the front I have more control with the outside programmer that I use with it.
...I thought the pump would be about the same size (a little larger) than the stim., but right now it is much larger. Did you read my post where I mentioned my concern over this? It's been 2 weeks and I thought the swelling would go down by now? I hope all is okay. I see the dr next week & will find out. It's about the size of a grapefruit. Does yours stick out very far? Thanks for all the help Bob, I really appreciate it.

Hi Dena,

I'm not aware of the size of the stimulator but I assume that because it doesn't hold medication in a tank, it can be much smaller and could possibly fit in the buttocks area although I still think that might be uncomfortable when sitting in some positions.

My pump originally was hardly noticeable but, over the past year or so, it has begun to stick out. I'd take a picture of it (well cropped to eliminate certain other areas close by) and send it to you if you wish. I don't see a way to post it in this particular forum. *** e-mail address deleted •••

Aloha,
Bob

Editor's note: Sorry I had to delete your e-mail address, Bob, but your post was sent to moderation because they're not allowed on the forum – for your own protection. If you want to share your address with Dena, I'd suggest you try using the private message option. I think it will go through that way.

This message has been edited. Last edited by: Karen Lee Richards,

Question. My doctor said he was going to add another drug to my intrathecal pump which already has fentanyl and bupivacaine. I don't remember what drug he said, but I remember it started with a "D" and he said that it bonds to different types of receptors than fentanyl does (something about hydro vs. lipid). He also mentioned that it was a lot stronger than morphine. I don't remember if he said 10 times stronger, or like 100 times stronger, but it was a lot stronger anyhow. I've been trying to find out which drug that would be but there isn't a consistent list anywhere of what drugs are commonly used in pain pumps.

The best guess I could come up with is Dilaudid (Hydromorphone) or less likely Dezocine, or Dihydroetorphine (very unliekly), or Diamorphine. Does this ring a bell with anybody? I know dilaudid has been used in pumps, but does it sound like that would be the drug my doctor was talking about? Or is there another one that anybody knows of another likely candidate that starts with a "D"? I've done a ton of research online already before coming here to ask this question and I just can't find a consistent answer. Any help would be appreciated. Thanks.

After a failed back surgery and three years with pain management I finally went through a trial for an intrathecal implant. The trial was a real mess...perhaps for some of these reasons: 1. I have been on fentanyl patches and the doctor had me discontinue them a day and a half before the procedure so my pain level was really through the roof and much more than I would typically have. 2. There was a LOT of scar tissue and the doctor had a very hard time getting a needle in two different locations. In fact, he called an associate in to help after a few tries and even that person had to try a few times in those spots. So although I "think" that I had some pain relief, it was very hard to tell because even with the injections I was still in incredible pain,much more than normal. The doctor has a good reputation in our area and has been doing this for many years. He used fentanyl and dilaudid in the trial since I have had no trouble with fentanyl but have had reactions to morphine before. The trial that he did involved injections at several levels and then keeping me at the hospital for the remainder of the day. I have heard that some doctors use catheters attatched to IV pumps and keep the patient there for several days, however this is not how this doctor does his trials. He considered me as a candidate and says that we will simply have to find the dosage and medication that will work best for me. I am worried that perhaps the trial results were much less than optimal. When asked about repeating the trial, he responded to the nurse that with the huge difficulties they had in getting through the scar tissue, that he did NOT want to go back in again until it was for the permanent placement. I want so much for this to work and work well. But I am afraid to go through all of this to find that maybe I was not a good candidate after all. Also, this doctor uses a 40mL medtronic pump...I have heard some doctors use a 20mL one. I have seen it and held it, it seems big and I wonder if it will be visible. I have lost over 120 pounds and my skin on my abdomen is rather loose because of this and I am continuing to lose a little more although I would say my build now is average, so I probably would not lose more than 15 more pounds or so. I wonder what I would look like, if it would tend to sag since the skin is a bit saggy...and if clothing would irritate it. I have read through so many posts, but this thread being so very long it has been hard for me to find the answers I am looking for. Can anyone help me?

Hi gettingitdone,

I'm sorry to hear the trial problems you've experienced. This thread is rather long (I started it so I can take the credit or blame but no one, that I can remember, posted about problems with the trial. Most physicians do appear to use the IV method for the trial that does require an overnight hospital stay. In any case, your scarring problems are apparently making it difficult for your doctor to properly place the temporary needle in order to test your response to medication directly in the spinal cord.

Of course, this is a critical step in the whole process and it would be a shame if they implanted the pump and it didn't provide the pain control expected. Perhaps it would be best to consider waiting until the scarring improves so that the normal trial can take place and the results can be properly evaluated.

On the other hand, your doctor appears convinced that you are a good candidate for the pump so you need to also consider taking a chance and having the pump implanted anyway.

Much had been posted recently about the pump implant location and whether it will be visible. I'm fairly lean and lost some belly fat so now the pump (I have the larger one) does protrude but it's more of an annoyance than a real problem. When I use a belt, I place it below the pump which makes it less visible because it pushes it up into a more fatty area. I've not had a problem with clothing irritating it, however.

The advantage of the larger pump is that it holds more medication which reduces the frequency of refills.

We wish you the best in whatever you decide to do and hope you will continue to post and keep us appraised of your progress.

Hi Everyone,

Just a thought for people looking for docs that put in and care for the pump. I have had great service from the Medtronic Company and their Rep. They answered alot of questions for me and the local rep was able to tell me what docs did the pump placement, who did alot of them and who does maintance.

Does anyone have tenderness where the catheter goes into the spine if you press on it??
Thansks, jsd59

for gettingitdone

I don't know why I even read this thread as I no longer have a pump: but it is interesting!!!
My trial was a mess too and I should never have persued the matter: but, when one is desperate and the doc seems to be confident that the problems can be overcome with dosage tweaking!!!
Trust me they can't. After 8 months of endless "adjustments" involving much travel and major disruption to everyone's lives I finally demanded it be removed. Several of the meds made me VERY ill particularly Dilaudid, and NO pain relief in sight. I couldn't tolerate a big enough dose to have any effect on the pain.
Two things I would say to you; don't let
anyone except a Neurosurgeon put your pump in, and be very sure it is going to work. I had 8 months of total misery with the drug reactions and having it removed is no walk in the park either. (CSF leakages and major headaches) and still no pain relief. Now they want me to have a neurostimulator!! Any thoughts?
Best of luck.
Mag1

Hi mag1,

Sorry to learn of your problems. I can't remember in your previous posts regarding the results of your trial prior to the pump implant. Did the trial medication provide pain relief? What medication(s) did they use for the trial?

I agree with your that, where possible, a neurosurgeon should do the implant but, as many of us have experienced, it's mostly done by anesthesiologists because they often operate the pain clinics. In my case, I had two catheter slippage failures from surgery done by an anesthesiologist but a neurosurgeon did the last revision which has been successful, so far.

I'm very curious about the recommendation that suggests using the neurostimilator in place of the intrathecal pump. My understanding is that the stimulator is designed to control pain in the legs rather than in the back area. It works by masking the pain using electrical pulses rather than placing medication in the spinal cord. It's a totally different treatment for a different problem but maybe your chronic pain is being caused by more than one problem. If this is the case, the stimulator might help but you may still have to take oral medications to control back pain when the pump is removed.

We'd appreciate more details on your situation as others may learn and benefit from your experience.

Bob

Hmm...so far I have only heard of two doctors, both anesthesiologists who do the implants near where I live. I know the neurosurgeon who did my back surgery does not do them, but I will check into that and see. I have recently heard of a doctor who is closer to me that does a two day trial where the catheter is connected to an IV pump and they keep you in the hospital for two days so they can adjust and get a better idea of how well the pump will work for you. I know that my insurance will pay for another trial but...I know this is stupid...I am a little scared that I will offend the doctor by asking him to send my records to another doctor for a "second opinion". I would feel like I could not go back to him if I ended up feeling he was the better doctor or something. This has gone on for a long time though and I want the best possible outcome. I don't know why it would be that my fear of offending would be almost stronger than my desire to be absolutely sure! ARG!!

I have not heard too many things about the neurostimulator. I have met only one person who had one and she was disappointed and said that the tingling sensation was aggravating to her. Hopefully some people here can give you more personal experiences.