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  • Well, it's pump time

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    Old 09-13-2005, 05:49 PM   #1
    Join Date: Dec 2004
    Posts: 74
    CoffyDrinker711 HB User
    Question Well, it's pump time

    Hello all:

    After months/years of narcotics etc., my son has reached the end point and will be worked up for an intrathecal pump. I don't know much about what will happen, how it will happen, what drugs they will use (find that out next week in clinic).
    I am hoping that all of the pump users here can share experiences with me (I've read plenty online but, I like going straight to the horse's mouth as they say).
    Is there an external port like a Hickman cath or a PICC line? Do they have ports like a port-a-cath? What about comfort? Appearance? How long was your post op recovery?
    When did you realize "hey this thing works!"? Infection issues? Granuloma? Rejection?
    Is this a marriage, a lifelong committment? Can a pump successfully be removed? Ever?

    Sorry for the interogatory!

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    Old 09-14-2005, 10:58 AM   #2
    Join Date: Jul 2001
    Location: Deer Park, Texas
    Posts: 321
    pixiepoodle HB User
    Re: Well, it's pump time

    Hi Coffey,
    I am not going to address everything about the pump because you should get lots of responses from pumpsters who have had various experiences. I had mine put in 3 1/2 yrs. ago and it gave me back my life. I had the surgery on a Friday and was back at work on Mon. For me (I have Fibromyalgia) it was an easy surgery. Since they start you out at a low dosage, it takes awhile to get it turned up to a comfortable level. Even though the meds are not going into your bloodstream, your body does gradually build an immunity to the dosage, so it keeps getting turned up, plus the dr. will give break thru meds to compensate for bad pain days. The drug most often used is morphine, but I ended up having an allergic reaction and they switched me out to fentanyl. The pump is placed near the surface of the tummy for refill purposes, so you can see it protruding somewhat, but regular clothes cover it up pretty well (its a small price to pay). As long you are going to have chronic pain, you will have the pump. There are some people who have had them removed for various reasons. The battery for my pump lasts 5 to 7 years and the pump will have to be replaced when it runs out. I understand there is now a bigger pump that holds more meds so you don't have to go as often to get refills. Refills depend on how often they turn up the dosage and how often they increase the concentration of the med. As an example, I currently go every 2 mos. for my refills. I hope when your son gets his trial, the results of his pain relief warrant him getting a pump. Keep us posted on his progress.

    Old 09-15-2005, 01:10 PM   #3
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    Re: Well, it's pump time

    Hi Coffee, You do have lots of questions but they will be answered from some of the horses, your doc and if you have more questions the maker of the pump, if they use a medtronics pump is very helpful and will put you in touch with who ever it takes to answer your questions.

    Everything pixie said is very acurate, so I won't go back over that stuff. Other than although the new Synchromed 11 holds 40ml instead of 18ml it's actually a little bit smaller. When she talks about concentrations she means 10 mgs per ml, 20 mg per ml or 30 mg per ml, when you talk about fentanyl they use micrograms per ml, as it's about 100 times more potent than morphine.

    The trial is just like having an epidural during child birth, an external cath is placed in the intrathecal space rather than the epidural and a pump like a PCA device is used to continously infuse medication. This way they can make adjustments every 12 hours to find a starting dose and one they consideeer a success. A success is a trial that relieves 50% of your pain. They had me stop all orals but I wasn't comfortable with that so I managed my pain somewhat myself untill the third day when the pump was doing most of the work. However I did have a spinal fluid leak from the external cath so it totally skewed any positive results. About 8 months later I had another trial where they simply did a single bolus injection into the IT space of morphine and had me hang around the clinic for about 5 hours, I did reach the 50% goal and hoped with tweaking It would get even better, I was also hoping I could tolerate some bupivicaine to numb the area a little without causing urinary retention, turned out I couldn't handle the Bupivicaine due to that side effect.

    Granulomas are caused by high concentrations of Morphine or baclofen. Those meds are not quite as soluable as Dilaudid and fentanyl so there is a risk of developing a granular cyst at the cath tip in your spine with morphine if you at a high concentration.

    It did take 6 months and about 16 adjustments to the daily dosage and they slowly increased the concentrationb to allow longer time between refills. I eventually reached 35mgs per ml and was only getting 28 days betwen refills so the docs decided to switch to dialuadid. After 4 months of timkering with the dose I'm getting about 40-50% relief but still use BT meds daily, I'm allowed to use up to 2 30 mg oxycodone tabs at a time but try very hard to use as little as possible. In the day I may break one in half, at night I may take 1and 1/2, I have never taken 2 at a time just to be sure I have something stronger than I have taken to use in an emergency.

    If you take the same amont every day as prescribed, if you have a bad day, those BT meds won't be any more effective as they were every other day the max dose was taken. The same goes when your on oral meds. Some folks are allowed to take say 30 mgs of oxy twice a day and take that every day, It leaves them nothing extra should they really have a bad day. Just because BT meds are allowed to be taken X number of times or X number of pills, It's important to only us what you need and not incorporate the max dose into your daily regemin, if you need to do that the pump should be increased so the BT meds can be used as needed.

    Unfortuantely my condition isn't stable and is slowly getting worse, I'm fused from L1-S1 and only about 10% took, this was the third attempt to fuse me and I have snapped two sets of hardware. The rig I havee now is slowly failing, screw heads shearing off, screws toggling, vertabrea shifting out of wack etc.

    I've been disabled since the last surgery in 99, no amount of meds will allow me to stand more than 30-60 minutes or sit comfortably much longer. NO matter what they set the pump on my spine is still going to shift, crunch and grind. Screws are going to pull in and out of holes that have worn down "toggling", so my situation is a little different than Pixies. Although we may both get 40% or 50% relief, that doesn't mean we both have the same level of pain or disablity.

    With my problems the best they can do is make life bearable, I haven't and likely won't ever get my life back just like someone that has a spinal cord injury. I have no feeling from my waist to my hips and no matter what they put in the pump or how high a dose of oral meds I take I will still crunch and grind when I walk, screws will pull out if I bend. Opiates won't stabalize spinal instability or correct nerve damage.

    I had hoped they could numb me enough with bupivicaine that I could return to work but it doesn't seem that will ever be possible, so I am a little diapointed in that sense, actually very dissapointed. But Going from oral meds to a pump is like going fom a very gray world back to reality with full color. Although we become acomadated to oral meds and people wouldn't know we take them, it doesn't mean they don't have an impact on how we see things and how we feel. The greatest thing the pump has done is clear my head, maybe that's a curse because it's harder to accept that this may be as good as it ever gets and all I have to look forward to is more mechanical failure of my spine and the hardware holding me together.

    I don't know how old your son is and if he's disabled, but setting his expectations too high may not be the best thing to do. If he reponds well to IT meds, pain control with a semi clear head may be the best he will get. Being disabled isn't a choice, If it was I would have managed to overcome all my problems before I lost my house and my credit went down the tubes. Some folks make the comment that they can't aford to go on disablity, first of all, nobody can, but it's not a choice. Had I been turned down for disability due to age and education and all the other factors involved, I still wouldn't be back at work, I would just be that much poorer.

    If you buy into the idea that someone can't aford to be disabled, you buy into he idea that all pain can simply be sucked up and managed by those with stronger wills. That's not the case.

    I have never heard Pixie imply or say that her financial situation or obligations prevent her from being disabled so don't tkae offense PP, I'm glad your pump makes such a great impact on your life. Disability is pretty cut and dry in my eyes. You can either stand and walk or you can't. I am simply saying finances and obligations have nothing to do with whatever your sons level of disability is. If a pump allows him to work that's great, If a pump takes the thought of how is he going to live another 40 years bedridden and looking at ending his life, that's great too.

    That 50% goal is just as subjective as the rate your pain with a number system. I've pretty much placd the pain level at a 5 if 50% of my pain has been relieved, but my 5 may be someone elses 10 that would send them to the ER if they woke up like I do.

    They normally do a psych eval as part of the screening process. It's great to have goals, but if he's unable to walk, to think a pump will allow him to run isn't realistic. The more realistic his goals are, the more satisfied he will be with what a pump can do. Return to normal life is the pinacle of PM succes, but that's not an possible for everyone.

    I am a little disapointed that my level of function hasn't improved as much as the level of pain I live with. I have gone from bed ridden to taking care of the housework and my daugter, so all my wife has to do is work. It's not what either of us planned or want but we try to make the best out of a bad situation.

    If you see the pump as another tool to manage pain, with some added benefits of having a clear head he won't be disapointed, but if he expects this to put him back on the ski slopes if he can't presently stand or walk without a cane for more than 20 minutes, he may be expecting a little to much.

    Sorry to get a little off topic, but expectations can be a big factor in his satisfaction with the pump.

    BY the way, when the batteries run low, there is an alarm, they simply change the pump and leave the catheter in place, less invasive to the spine that way.Some docs change the pump every 5 years just to have it done on a schedule rather than squeeze it in as an emergency.

    After surgery, although not all docs recommend wearing a binder, they make a huge differene in the comfort level the first few months especially when riding in the car and hitting bumps. Developing scar tissue is part of keeping it place but there is no need to be a masochist. Spend the 20 bucks on an elastic ab binder to hold it in place so he can trevel with more comfort the first couple weeks. When the pump bouncs around the first few months you feel a tearing senstation which is rather unpleaseant.

    Good luck, Dave

    Old 09-16-2005, 11:20 AM   #4
    Join Date: Jul 2001
    Location: Deer Park, Texas
    Posts: 321
    pixiepoodle HB User
    Re: Well, it's pump time

    Hi Dave,
    I just read your post and your knowledge is just amazing. I did want to clarify that I have had better success with the pump because I don't have anything wrong with my spine, nor have I every had back surgery. The pain from Fibroylgia affects the joints, muscles and tendons from the neck down. The pain can be located in different places on different days. Before the pump, I had a lot of trouble with my feet. When I would wake up and get out of bed, both my feet would feel like someone at pounded the top of them with a sledge hammer. I also had pain in my hips and back of my thighs. The pain from my feet and hips would be in addition to my entire back feeling like it was in a muscle spasm that never quick. After getting the pump, my feet never bother me and hips only hurt if I do a lot of walking (like going to the Mall and walking back and forth for a few hrs. shopping). My back will start hurting from storm fronts and humidity (I live in Texas - great for humidity, or if I do too much physically, like lifting something heavy and usually by the end of the day from the terrible ergonomic situation of my desk. (My company had 3 ergonomic specialists access my work area and they just can't make a desk make for someone over 6 ft tall work for someone 5'2"). I wish I could be on disability, but I think I am better off working because it helps keep my mind off the pain I do have and it slows the process of my muscles atrophying. I am 53 and just hope I can continue to work until I get my house paid off in about 5-6 more years, although it gets harder and harder to get up and moving in the mornings and I am so exhausted when I get home from work, I don't want to do anything at home. Thank God I have a wonderful understanding hubby who helps out as much as he can.

    Old 09-16-2005, 12:55 PM   #5
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    Re: Well, it's pump time

    Hey pixie, You really didn't need to justify why you have a pump, if it keeps your working and living a normal life , no questions asked.

    The Irony is, what I wish for the most is to be able to work. I've lost a couple friends that think I'm on some kind of paid vacation, Hardly.

    No amount of money or disability pay would replace my need for feeling like I'm contributing more than housework. Even the disabality money doesn't feel like a contribution. My wife has seveal severe problems too. Both feet have been entirely reconstructed from a muscle disease that attacks the nerves and causes severe atrophy of muscle. Both arches collapsed, her heal shifted and on top of that she has Osteo perrosis and had over 30 fracatures in a 24 month period. I feel guilty seeing her limp around when she gets home. She also has fibro and Chiari 1 brain defect that blocks the flow of spinal fliuid up the canal and causes severe headaches, But she is able to manage with lower dose meds and theapies like botox and occipital blocks. It's that ZCP curve thing, we all fall on it somewere as far as dose and level of disability.

    I couldn't do open house at my daughters school last night because it was set up like a school day, 20 minutes per clases , 7 bells plus lunch where you get the PTA speach. I just can't walk a school and spend 3 hours somwhere with no where to lay down. I think the sweat dripping from my hair and strangers asking me if I'm alright would have embarrased my daughter anyway.

    I guess a wheel chair or scooter would give me more mobilty, I don't do malls or Busch gardens which is just an hour away because of the walking and standing. But I figure if I give in to a chair I will loose what I have and you are right about the atrophy and loss of strength. Getting out of bed 9 months after the last surgery wasn't easy and only a pooland meds alowed me to do that. I can't say things haven't gotten better but I'm pretty much getting the idea that I 'm going to have to have surgery again at some point to stabalize things or I will keep detiorating and this will be my life for the next 30 years.

    I'm on the coast in VA and with the huracaine spinning off NC I can barely move today. It actually crossed my mind to take some restorill and stay in bed, I got that thought from the guy that took ambien n the day and wnt on an advanture. LOL I also thought about being admitted for an epidural block above my fusion. When I'm ready to be cathed it means I really hurt. Maybe a Ketamine coma just to break a long cycle of pain. I'm kidding myself, nobody is going to admit me for pain control and I don't want the pump increased, I like the clear head and can't stand much more urinary retention Some days are like that and today I'm feeling a little desperate.

    A friend I talk too who's wife has a pump just had hers replaced with the newer unit, they actually placed at the top of one fanny cheek. I can't imagine finding a comfortble seated postion or even laying on the thing but I guess if you have room that seems to be the new place to implant. BTW,mI have the synch 1, I had it implanted 6 months before the new unit was aproved. Medtronics didn't hink they would have aproval for another year and I couldn't stand the high dose orals much longer.

    It can be a lifesave or just another tool they have to manage pain. The good thing is you get to do a trial. Someone would only be setting themself up for dissapointment if they reportd more relief than they actually got during a trial hoping once it was titrated or other meds used it would make it more effective. I've met quite a few people that had a pump implanted when the trails were really iffy and the relief nowhere near 50%, but they were so sold on the idea that the pump was the ultimate in pain relief and they went ahead with the implant. I've seen them taken out within a couple years after running through all the meds, the titration and combos of meds when they just can't find relief from that form of pain management.

    Specifically nerve pain is much harder to manage, doesn't respond as well to opiates and requires much higher doses. There the SCS might be the better choice But pain does make you desperate and most people believe pain meds are the answer to pain, Unfortunately it's a little more complicated than that.
    Again, I hope the trial goes well and I'm glad your so satisified with your decision Pixie. It's also a little more reasuring not being dependent on orals , can you imagne living in New Orleans and on an oral med, yikes. Living on the coast is certainly cause for concern. We lost power and evacuated last year for 10 days in august. Fortunately I already had the pump implanted 6/04, I'm sure 1/3rd of the patients needed their meds during those 10 days when the clinic was closed due to flooding and power outages. There is that added sense of security with the pump.

    Take care, Dave

    Last edited by Shoreline; 09-16-2005 at 01:05 PM.

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