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NEW info on intrathecal pain pump....

tarheelgirlttarheelgirl Posts: 473
edited 06/11/2012 - 8:47 AM in Pain Management
First, Ron I know you would rather us seaarch a topic and read rather than start a new topic...but I've read everything there is on this site regarding pain pumps and I really want NEW info since the devise has recently changed. Plus, I'm suren more have had the pump implanted since the last long thread...
S

So, everyoone who has a pain pump, can you tell me the "good the bad and the ugly" once more about your pain pump. Edited but wanted to hear from the members of this site. I have so many questions.

*did you get off all oral meds:?
*is the devise uncomfy when you sit, esp if you lean forward:
*are you able to walk better?
*are you getting good relief??
*if the catheter comes out, is it simple to place back?
*are the med refills usually covered under most insurance as a copay?
*do most insurance companies approve the surgery? (I know the last two questions will depend on MY insurance)
*any other advice, experiences would be deeply appreciated.

Oh, and what is the pschy eval for?

Thanks!

EDITED

Standards agreement and posting rules
Please note that Spine-Health reserves the right to edit any messages posted or submitted or e-mailed to the Company and use them for content on the website or in other company materials. No e-mail solicitation or advertising of other companies, products, services, or web sites is permitted in the Spine-Health.com forums.


Post Edited by Moderator haglandc
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Comments

  • Hi Tarheelgirl,

    I just wanted to echo your interest in fresh info on the Pain Pump (same thing as Intrathecal, right?).

    After yet another set of injections that seem to be off the mark, and as I approach my one year anniversary of my fusion, I am becoming more interested in a Pain Pump.

    Thanks,
    Dave
  • yes, they are one in the same. What do you take now for pain? If you dont want to publically state that, you can PM me...just curious. I'm up to 320mg of oxy a day...it would be nice to get that 1/300th of a fraction...it's got to be much better on your body (liver). I don't know...just want more info.
  • Thanks for asking the the questions that I have been looking for.

    Julie

    PS/Edited

    EDITED

    Standards agreement and posting rules
    Please note that Spine-Health reserves the right to edit any messages posted or submitted or e-mailed to the Company and use them for content on the website or in other company materials. No e-mail solicitation or advertising of other companies, products, services, or web sites is permitted in the Spine-Health.com forums.


    Post Edited by Moderator haglandc
  • Hi There, Edited LOL My questions are following:
    1) I would be able to drive because the drugs would be in my spine and not being metabolized like they are now. (Now I am not comfortable with driving). Is that true?

    2) What is an estimate of how much this can run a month once the dosage has been set and stabalized?

    3) On a scale of 1-10 how uncomfortable is the injection through your stomach to the port?

    4) How does the skin handle the injections in that same spot month after month with out breaking down? I have issues with scarring real easy inside and out.

    5) During the trial, is there some immediate relief felt? Will it be extreme or just slight?

    6) Will I feel painless enough to return to work (currently retired disabled 2 yrs) or painless enough to enjoy life but having to still watch what I do so I don't make it worse with the euphoria?

    7) Those that have had a pump, or currently have one, would you do any thing different?

    Thank You,
    BP

    EDITED

    Standards agreement and posting rules
    Please note that Spine-Health reserves the right to edit any messages posted or submitted or e-mailed to the Company and use them for content on the website or in other company materials. No e-mail solicitation or advertising of other companies, products, services, or web sites is permitted in the Spine-Health.com forums.


    Post Edited by Moderator haglandc
  • Excellent questions Bep! I hope we get some answers for all of our questions soon by someone.
  • I had my pain pump put in about a year ago and I was very excited about how it would improve my pain. First of all, it takes time for the doctor to titrate your dose to a level where you feel comfortable with the least side effects. Please keep in mind that everyone is different and some people will need more time or higher doses. After surgery they will have you on 1 mg a day of intracecal morphine for example. At your follow up office visit they may increase it to 1.3mg or so. The titration process is really slow- I started at 1mg of dilaudid daily and about one year later I'm at 4.4mg. Not everyone will get up that high, but from what I understand is that there is no limit on how much to give, but it is left up to the doctors' discretion. You can find a goldmine of personal accounts at Edited.

    My pump refills fall under office visit and all I pay is my normal copay, while my insurance picks up the rest.

    If the catheter dislodges, you will have to go thru surgery for them to fix it. My doctors says it takes something traumatic as a nasty fall or car crash to do that. I was always scared that it would come out but now I know it takes a lot for the catheter to come lose. If that happens, one of the early signs is that your pain increases and you experience withdrawal symptoms. They will bring you in for a dye study to confirm the catheter coming loose.

    As far as getting off oral meds, I did wean off my ER medicine, and have recently cut back on my Oxycodone and this has been done while my Dilaudid dose was increased. I have run into more pain and suffering due to fibromyalgia and more meds like Lyrica has been added. I hurt all the time and sometimes it's hard to tell which condition is causing more pain.

    The pump refill is not so bad. It takes about 10 minutes or so and the most discomfort you feel is some stinging. I haven't had any problems with my skin due to the injection sites. After surgery, the incision will feel sore for around 3 months; it did in my case and I called my doctor and it was okay to use a heating pad on the area for a few minutes at a time for the pain. If you have increased incision pain, always call your doctor first.

    Well, I hope this answers some of your questions because my fingers are numbing up. Take care guys..

    EDITED

    Standards agreement and posting rules
    Please note that Spine-Health reserves the right to edit any messages posted or submitted or e-mailed to the Company and use them for content on the website or in other company materials. No e-mail solicitation or advertising of other companies, products, services, or web sites is permitted in the Spine-Health.com forums.


    Post Edited by Moderator haglandc
  • I'm limping along on 60mg of Hydrocodone per day. That tells me that you have been suffering much more than me. However, I keep telling my doctor that I'm in pain for more than half of the day because my medicine doesn't last very long. So, maybe I would be taking a lot more if I was allowed to be more comfortable.

    I recently had a very invasive set of injections and it obviously didn't work as intended. I'm at day 7 and I should be beginning to feel better by now. Instead, my entire lower body aches severely, and my usual lower back/buttock pain is more intense. Still, based upon what you've shared previously, I know that you are really suffering and I don't mean to complain about my pain to you. That's for certain!

    I hope you are able to pursue this and get some meaningful pain relief!

    Take Care,
    Dave
  • Oops! I just had my first post ever edited and I don't even know why. It might be good if you copy it and message it to us so we remember what NOT to say. I don't even remember what I posted :) Sorry!

    Reformed1- I wanted to comment on your post- Pain is different for each person. Just because your managing along on the med you are doesn't mean you are suffering any less than anyone else on something stronger or harder to get. It just means that is what you are being treated with. I chose Norco because my NS could fax it to the pharmacy and it was a lot less driving for me. If it was percocet I would have had to go and pick it up personally each time.

    Incidently I am manging (poorly now) my pain on similar doses of the very same med. On the weekend I use more (take it every 6 hours) but during the week when I have to drive I use OTC meds during the day(since I have to drive and I don't want to break the law). Therefor usually by late afternoon I am almost out of control with pain before I take my pills. Plus it does nothing for the nerve pain.

    If the pain pump is an option for me- and it doesn't have the side effects of feeling drugged I would be all for it. That is why I am trying to find all I can about it. I doubt I am a surgical candidate- I don't even want to be at this point. I know I have to do something. I want to come prepared for my first PM appointment. I would rather be in a leadership roll than in a following roll when it comes to my health care and a Pain doctor. I don't want to be put on all different kinds of meds and drugged out of my mind. Scary!

    Julie
  • Links, solicitations and recruitments to other websites or groups is not permitted. This thread was very quickly becoming a major solicitation for another web based group.

    My apologies for not sending out an individual message to you at the time.

    "C"
    No e-mail solicitation or advertising of other companies, products, services, or web sites is permitted in the Spine-Health.com forums
  • Ok- the yahoo group. Got it.

    Thanks,

    Julie
  • LOL - Are you allowed to even use the "Y" word?
  • dilaurodilauro ConnecticutPosts: 9,726
    soliciting other members to join another site is.

    We had a situation like this almost two years ago. It was much more serious. It created a huge rift in the Spine-Health membership. Many members left, many members joined other sites, two moderators were immediately removed from their positions and their Spine-Health membership's revoked permanently.

    Living through all of that, as many of our current moderators have, we do not want to see any recap of that again.

    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • oops...sorry, I think I mentioned that name too...but was invited to join.

    Julie, excellent post. She is absolutely right Dave! There is no way to tell who is in more pain or who is suffering more. I happen to have a great doctor who will not let me suffer. Other's doctors are not as compassionate, unfortunately...and I've been in those offices before as well. my PM was such a sweetie pie...but she was very conservative with certain meds and how much. I remember when I was having headaches constantly...lots of migraines and she referred me to a neurologist...well he almost had a fit with the percocet I was taking (plus he was a jerk and said that I shouldn't be hurting so bad accourding to my MRI at the time). Well he jerked me off percocet thinking they were rebound headaches from oxycondone and stuck me on 50mcg fentanyl patch. I was falling asleep standing up. About 48 hours later, I was sleeping, it was 2am and I projectile vomited all over me and hubby and I did it in my sleep....those were the start of withdrawls from the oxy...horrible 3 days!! I called and got the patch decreased to 25 and it was better.

    Where am I going with this rant? That perhaps I'm a whimp and have a very low tolerance for pain (I do admit to it). So, just b/c I'm on more meds than you doesn't mean a thing. You've had a few surgeries...I've had none. Now, my condition has obviously progressed if I got SSD (I'd like to tell that neurologist who was so rude to me)...but pain is just different for each person. I know you suffer too, as most do on this site, and your daughter as well...bless her heart. Thanks Julie for the explanation.

    Thanks meydey for your post. I guess there are not too many pumps on this site. I appreciate your honesty and your time.
  • oh yeah Dave....I'm really sorry about those injections. I think its a conspiracey (hahaha)...all these injections. Perhaps they help some, but they did nothing for me and I know alot of people that they didn't help.

    i decided after 2 years seeing a PM who is an anesthesiologist who did all my injections (trigger point and epidurals)...i decided to go to a "SPine doctor". Well, he came in, talked about 2 minutes...did not examine me at all and then scheduled me for a set of 3 epidurals. My hubby and I cancelled the appt's when we got home and felt that these "injections" are a nice money making tool. I never thought that until I went to this Spine specialist...although no injection never helped me at all..but he threw up a red flag to me. I decided that day no more injections...I had done enough of them without relief. But perhaps they help others.
  • I am sorry for the infraction, I will be observant of the rules because I truly love this site. I have gotten so much info and inspiration from you all. Actually I didn't know I did any thing wrong until the explanation. Makes sense to me. I'm one of those that hits the accept box without reading all the fine print, BUSTED...LOL
  • BEP, one thing I've noticed is the infraction is noted and then we move on. There is no lingering "grudge" from the moderators or admins. I think that says a lot about the objectivity of the authority team.

    Please don't feel so badly!

    Take Care,
    Dave
  • yes (nodding) I am the same way! I don't read alln the fine print.
  • Long post!!
    I have only had my pain pump implant since June of this year so I am a newbie with the pump. I will try to answer your questions as best I can.
    (1) no, I am not off all oral meds YET. But I have cut them down from 5 Oxycodone a day to 3 a day. I do have flare upe in my pain that require extra meds. The pump only takes care of your "normal" pain level. There is a hand held device that you can use to give yourself an extra dose of meds through your pump when you feel a need to or during flare ups. It is called a PTM and you must get one at the time of your implant for the insurance to pay for it. That is important to remember when talking to your Doctor about an implant.
    (2) no, there is no discomfort at all when sitting but when I bend down while sitting it bumps my leg but there is no discomfort. I do not even think about it. It is large, about the size of a hocky puck and does protrude a bit. I have the larger pump, 40ml size. It does not have to be refilled as often. It is in my left side just below my ribs. The only down side I have found with my pump is the size. I can no longer wear slacks that zip up or are snug in the waist because of the pump...but that is no biggie to me. It is the pain relief that is important.
    (3) My balance is very bad and I had trouble walking long before my pump implant. And my balance has not improved since my implant. I do believe once my pain is under control, down to a level I can live with, my balance will improve. I have yet to find out just what is causing my balance issues but I hope to see a Neruologist soon to see if they can pin point just what is causing it.
    (4) As for the relief I now get. I am getting good relief in some ways but still have a long way to go. I was started out on a very, very low dose of Diladuid. I am still on less than 1 mg of Diladuid a day. I had savage pain in both my feet and legs up to my knees. The pain was constant. They pounded and throbbed 24/7! I now have NO pain when sitting or laying down. I can now sleep all night without pain keeping me awake. To me that is wonderful. But I still have pain when I am on my feet. Not as bad as it was but still very bad. I also have flare ups that are savage. I go in the 15th for another increase. I can go in every 2 weeks now for an increase if needed. I still have a long way to go but I know I will get to a level I can live with. It is up to your Doctor how much meds he starts you out on and how often he gives increases. It is also up to your Doctor on how he does trials. Some Doctors just give one injection of morphine,(usually) some have you in the Hospital for 3 days or longer giving you one injection a day through a temp catheter placed in your spine. Some doctors send you home with an external pump for several days.
    (5) If the catheter breaks it must surgically be replaced. I have not have mine replaced so I can't go into any detail. I do know that if you suspect there is a problem with the catheter they will do a dye test to make sure there is a problem before they do any surgery. I can only tell you what others have said who have had this done and they say there is nothing to it. No worse than having the permanent implant. You may be a bit sore but that is all.
    (6) I believe all insurance co. will pay for an implant but can't say for sure. So I will not go there.
    (7) The psych eval is something insurance companies require. They want to see if you suffer from depression and if you do they ask that it be treated. There is nothing to it really.
    There is a possibility that you can get a spinal leak headache. I was scared to death that I would but I did not. A good Doctor knows what he is doing and chances of this happening are slim...but it can. I was scared to death that I would have a spinal leak but I did not. His nurse told me that did happen sometimes but not often.
    There is a very rare chance that a mass will form at the tip of the catheter making it difficult to remove but that is very rare. I have no fear of this at all.
    Pain pumps are not dangerous as some will lead you to believe. I do not worry about mine and hardly think of it. Because the meds go directly into the spine you do not feel drugged....only a reduction in your pain. Side effects are cut down because the meds do not go through your system.
    I am very happy with my pump and love the pain relief it gives me. I am getting my life back at long last.
    If anyone would like to send me a PM I can tell you important questions to ask your Doctor before you have an implant. No, you do not have to try the SCS first before you have a pain pump implant.
    The pain relief feels natural. No drugged feeling and I have no side effects. It is the very best choice for me that I could have made.
    Feel free to PM me with any questions you may have. I am here to help....if I can.
    Cheers :H
    Patsy W
  • Patsy, as I've already told you, thank you so much for answering so many of our questions...we apprciate it so much!
  • Again rather long......Sorry
    You are more than welcome tarheelgirl.
    Pep...I did forget to mentiona couple of questions you had ask.
    One.....I did not feel instant relief during my trial but I did feel relief within an hour and a half after my injection. The ammount of relief you may feel will vary from patient to patient. Some feel a great deal of relief and some slight.
    As for returning to work after your pain is reduced to a level you can live with. I believe that is up to you and the kind of work you do. Some people have other problems, such as Meydey, that prevents them from returning to work. I am self emplayed and am back to work when I am able. I am still a newbie with my pain pump....but a happy newbie.
    And please remember the doses of meds that you recieve through a pain pump are in micrograms not milligrams. Only tiny amounts are required because it goes directly to the spinal cord, not through your system.
    Bep ask if I would have did anything diferently. No I would not have. I am very happy with my choice of having a pain pump implant. It has given me the first real pain relief I have had since this chronic pain started. What is not to love about something that reduces your savage pain?
    Please remember I can only speak about MY experances.
    I do hope everyone finds a way to reduce or better yet eleminate all your pain.
    I know I will never be pain free.....the best we can hope for is a reduction in our pain level. A level we can live with.
    Sorry for such a long post.....again.

    Cheers :H
    Patsy W


  • Can anyone tell me if you can have a spinal stimulator and a pain pump implanted?

    I had a SCS implanted this year and it works well enough but I am still on many pain pills and the side effects are horrible,

    I worry about my liver and kidneys and I hate the drugged up feeling I get all day.

    Does the pain pump cut down on these "spacey" "drugged up" feelings?

    Is it better for your body since you are taking such a lower dosage?

    Thanks in advance :)
    Dina
  • Yes, you can have both...a stimulator and a pain pump. A lot of people do.
    Where is your pain and what is causing it? It would help a lot to know that.
    With a pain pump you do not feel drugged because you only need very small doses and it goes directly to your spinal cord, it does not go through your system. Doses are in micrograms not milligrams. I can't even tell I am on any narcotics....all I feel is a wonderful reduction in my pain. I have Diladuid in my pump. They can use Morphine, Diladuid,Fentanyl or Prialt(this can have bad side effects if they do not start you out on a very low dose and increase very slowly)
    Once you have a permanent implant and get it up to a therapudic dose(which takes time)you may not need the stimulator.
    I have only had my pain pump a few months and was taking Oxycodone every 4 hours and still in pain. Now I only take 3 oral pain pills a day but I am still getting increases.
    They start you out on a low dose and give you increases every couple of weeks until you get your pain reduced to a level you can live with.
    Feel free to PM me with any questions you may have and I will be happy to help in any way I can.
    Cheers :H
    Patsy W
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