(SCS) Spinal Cord Stimulator vs. Intrathecal Pain Pump

I just posted this reply to another HW member trialing a stimulator.  The I notice we have several members considering stimulators that might benefit from my expience with both.  Here was my reply to someone now trialing the Simulator....  I have a Boston Scientic Stinulator that was implated in 2007 at the Cleveland Clinic.  I did have what I consideredto be a 50% reduction in my pain level, but would now classify is merely a change in sensations - if that makes sense to you.  At the time of my trial I was so relieved to have a change in my pain level, that amything was welcomed.  The simulator is not able to directly impact the cause of your pain, like medication does,  it merely adds a secomdary sensation of top of the original pain sensation,.  This secondary stimulation of or "electrical tingling", is strong enough to blur the under lying pain.  What you end up with is your original pain plus this "electrical tingling" sensation on top of it.  The goal or hope is that this "electrical timgling" sensation offers a semi-tollerable diversation from your original pain impulses.  At the time of my trial, I was so relieved that my "normal", previously untreatable pain, except with high doses of very strong narcotics, would be blurred or altered into a more torableble sensation.  I do not want to damper your success, but give you another persons experience with the simulator.  At first I was happy with this new sensation, it was a drmatic change from my long standing original pain.  Unfortunatley, over time it got to be almost a sensory overload for me.  I now a period of time I now realized I still had my same underlying pain plus this new "electric tingling" sensation on top of it trying to blur it out.  about one year after I had the permanent stimulaor implanted, I got to the point were my original level 8 or 9 pain was still there - plus this new sensation which I had more control over.  I got to the point where I could no longer tolerate all these sensation (sensory overload)  and continued to seek better control of my underlying pain.  Not just altering it.  I began a trial of the pain pump.  I did not realize at the time my stimulaor was impanted, that pain doctors were able to use wide variety of different medications in the pain pump, that are not available in oral form.  With the pump, I now had access to a number of highly effective  pain medications  (anesthetics) than I did when I was taking the basic oral narcotics.  Also the side effects of the narcotics were basically eliminated, and  doses in the pump are about 1/100 th the strength that oral doses are.  Because the medication does not need to be processed through the liver or cross the blood brain barrier to access the direct pain area, you get immediatel relief with minute doses. Plus, because you receive constant tiny amounts, your pain rarely ramps up to the level where you need break through oral relief.   I ended up having the permanent pain pump implanted and it turned out to be provide me with  ultimate relief in pain control.  For over two years now I have been able to eliminatemost of  my underlying pain with all the new anesthesias now available for my pump that were not available to me in oral form.  My pain has been majorly eliminated and not just blurred.  The quality of my life has been totally improved by over 400%.  My only advice to you is to also trial the pain pump before you make a decision to have the stimulator permanently implanted.  I now very rarelyy used my stimulator.  I'll go months upon months and then the electrical charge in the stimulator is completely drained.  I find I need to recharge my stimulator for about 4 hours before I can start use it again.  With the knowledge I have now on both  devices, almost 3 years,, is that I am really sold on the pump for the best possible pain relief.  I get such good relief from the pump that I can going long periods of time where I do not need any break through oral medications for pain relief.  The ultimate question is whether I would have implated in the simulator, knowing the I would get such dramatic pain relief from the pump.  The answer is no.  In retrospect, I wish I had trialed BOTH the stimuatlor and the pump before making a peranent decision. After the trial of both, THEN decide which did the best job and have it impanted.  Hands down the pump gave me pain relief instead to a secondary sensation.  Pain relief is everyones ultimate goal.  Being pain free is pure nirvana.  The pump was the only thing that ever gave me periods of being totally pain free.  The pump changed my life, the stimulator just made it more tolerable. I am sorry this posting is so long.  My goal was to give you a secondary view point of the benefits and limitations to both the pump and stimulator. Please feel free to e-mail me if you have any specific questions that I might be able to help you with. Good luck in finding the tool that best meets your pain relief goals.... 

Dearest Stella Marie:

Thank you so very much for your post: it was informative and exactly what I needed to hear. I have severe pain from a fusion which never "took." I also suffered a massive infection which necessitated taking all the hardware out of my prior fusion, which is perhaps why it didn't take. I had the stimulator permanently implanted last March. My experience with it is exactly what yours is/was. At first, it seemed to divert my mind from the pain, but I was always aware that it was there. It was like spraying air freshener in a stinky bathroom: it still stinks with a flower scent!

So today my pain doctor talked with the surgeon who would perform my next and final fusion. He said it would be very risky, and even opined that there would be a 50% chance of re-infection and possibly even death. So he suggested the intrathecal pump as an alternative. I am SO happy that I did a search for this and your post came up. You are telling us/me exactly what my doctor did: that it would be the best alternative for me, and that many of his patients and practically pain free because of the pump.

One question, Stella Marie: the stimulator is really big and very noticeable on my buttocks. Is the intrathecal pump as noticeable?

Thank you so much for giving me a huge dose of hope. You are magnificent!!!!!!!!!!!

Hi I just wanted to pop in & leave a comment since I noticed you were asking about the pain pump. Let me give you a little background first- I always had tenderness in my back as a teen it became aggrevating I would say..... I always chucked it up to high school cheerleading, you know & several other activities- go go go. When I was about 20 it became annoying & decided to see a chiropractor- pfft! I was twisted into positions that I didn't think humans could do! Well then I moved to Atlanta & was bartending & working my pa tooty off. It looks fun, but man there is a lot of work to it....then the pain was blinding. I went to a dr there & he basically accussed me of drug shopping. I was soooo angry. I told him I wanted results & fix it... my boyfriend (now hubby) was irate! He did prescribe me percocets but it did nothing for me. So I went to another chiropractor- she came in the bar a lot so I though ok, one more try. yeah that was a big PFFT! Well my parents convinced me to come to Tampa & work for them. I didn't want to leave the bar but my parents knew I was having problems doing the simpliest things. I had a great boyfriend up there & we had been together for maybe a year or less & I loved him.... but I hated asking him to come to my place & help with my chores. (To cut that story short he is now with me & obviously we are married!!! yeah!) So I decided down here no chiros, so I went to an accupuncturist. Which was interesting- kind of like a very very light lidocaine feeling- never lasted more than 2 hours- finally I decided to get a real dr. I was referred on to a pain clinic & I had all these tests done & I literally cried when it was something legit. Just all that negativity from the first dr messed with me. Now I tried everything on the drug list I was on 80mg oxycontin 2x a day, dilaudid 8mg 5x, zanaflex 4mg 3x (muscle relaxer) & lyrica 100 mg 4x a day. There are a lot of drugs mixed in- ooh they may be listed on my signature but I am going to remove them.... Anyway we talked about a pain pump for a few months & honestly it was because someone on here had such a good experience I though- well, no damage with a week trial? I don't know what your dr does but mine made me come in every day (mon-fri) & they would up it every day.... the first 3 days I though crap! This will never work.... day 4 changed my mind totally. (and by the way there are no withdrawls, or at least I didn't have any, going cold off oxycontin- of course ask your dr if you should!!) I had the pumped installed. I'm gonna go with my cons 1st: It really does take a while to get to a comfortable level- they can only push so mush at a time, I NEVER have relief from morphine- but my dr said it was 500xs the normal strength of regular morphine. I am still bumping up, but only because I have had more damage than I did 2 years ago (installation date). The worst con is some drs- especially er drs- do not like you are on a pain pump & if you are in a situation where you need pain meds (mine was IV) I had a terrible time convincing her I don't feel the effects of the morphine. She called me a liar to my face- oh yeah. I was admitted by my regular dr, & thank God he believes in controlling pain- but I had a nurse have the audacity of telling me I need to fight the pain meds & try yoga.....?? really? REALLY??? I can't barely move around my own home without dragging a leg or pinched back or neck. lol. Mr dr said they just don't get a lot of pain patients to be patient with them. OK the Pros: 1) There is such a thing as a bolus shot- you can go to your dr anytime (they can get you in, of course) if the pain is so bad the can activate a remote to send an extra shot of (whatever drug you get- & to comment on the drug info there are a lot of drugs that can be fused together in the pump, for example I have a combo of morphine & clonidine~thats for migranes- hey another pro!) anyway they shot can be a great friend on your really bad days. I think about everyone on here has gone through the ER with back pain & recieved the lecture. 2) I hate to say this but I had a major constipation problem.... gone!! 3) There is no "fuzzy" feeling. 4) CVS actually LOST my oxycontin script once I had 3 days withdrawls & they are AWFUL.... the pump can tecnically last a few more months than they say, so no withdrawls.... yipee!! So I am a fan of it. I have a Medtronic as well. I actually had to memorize the whole procedure & pass a psychological exam. There was a rep from Medtronic who was there- she introduced herself & again had to repeat the procedure.

Now I do need to comment I still take the same Dilaudud dosage for pain. I'm not at a level yet where I am comfortable but I will get there. I also have fibromyalgia & multiple injured discs, one sitting on my spinal cord in my neck- & I'm gonna have to have surgery on it- its really bad. And my lower back & hip are a mess too. I refuse to have the lower back surgery because its just a heavy risk of making it worse- from the drs mouth. So you will more than likely still have breakthrough (bt meds for short) meds at least until your injured area can live off the pump. I know this was very very long & never intended to leave this long of a message but I just thought I would chime in. I hope maybe this is helpful & feel free to ask me any questions.... oh! And Medtronics website has the procedure on their website. Check it out- I think its just medtronics.com Alright, hope you feel better & this helps you some!! -Shannon

One feature I forgot to post about is the newer models of the pump at Medtronics have a device called a PTM. What this device does is allow a patient to have so many bolus a day. Your dr programs it to release a certain amount of medication at a time as if you were getting a pain shot in a lighter dose. It is the drs decision on whether or not he feels the patient needs this device. Some drs are ok with them and some are not. Also, there are models of pumps that can be programmed to release a bolus each day at a certain time without having a PTM. For instance if a persons pain is at a all time high at 4:00pm every day then the dr can program the unit to give a bolus at that time every day. Also, this hinges on whether or not your insurance will pay for these models. Mine would not pay for the one that the dr programs in his office. PTM's were not out when my pump was put in and I am sure they would not have paid for it. The cost of a PTM is around $1000.

Susie

Hey Danny,

This is a very old thread and most of these members are no longer w/ HealingWell. I'm going to lock this thread and cut/paste your info into a new thread.... so that others can respond.

Thanks, Tina