Intrathecal Pump

Discussion in 'Fibromyalgia Main Forum' started by wanderingbluedragon, Jun 17, 2008.

  1. wanderingbluedragon

    wanderingbluedragon New Member

    I have been doing a lot of research and considering the recent discoveries of late regarding the mechanism of FM and it's role in the spinal cord and fluid I was looking in to an intrathecal pump. I came across one site that said it would be helpful for FM. They do not suggest a spinal cord stimulator for FM, but the pump could be helpful. I hate taking pill and am looking for an alternative method of pain relief. I am also tired of Dr.s looking at me like I just want to get high when my husband had to beg my doc to give me something for the real bad days and I hardly ever take them. Anyway, does anyone here have one and if so does it work for you?

    Any opinion would be appreciated. I also have some major spine problems due to a bad car accident 6 years ago (which is probably the cause of my FM).

  2. wanderingbluedragon

    wanderingbluedragon New Member

    The site is a reputable one and I do a lot of research on pain management for FM as I have not been able to get help from any doctors as of the present. Thank you for your answer and your concern. As for my spine, I had a bi-level fusion of the C4-C5 disc and the C5-C6 disc due to disc rupture. I had spinal stenosis which was impinging my spinal cord. I also had kyphosis.

    I have a problem with my lower back as well, but it is undiagnosed at this current time. I also have ME/CFS to go with the FM and Chronic Epstein Barr. I also have Adhesion Related Disorders from multiple abdominal surgeries.

    I had initial relief from pain after my surgery, but within 3 months have had worse pain than before the surgery. I am wondering if it is scar tissue as I have this problem in my abdomen. I am working on getting this sorted out at the moment.

    Anyway, the site is:

    Thank you so much for your information.

  3. PVLady

    PVLady New Member

    I read about the intrathecal pump. Yes, they do recommend it for fibro. Also, apparently, with the pump you require much less morphine - interesting.

    Have you been checked for a synovial cyst on your spine? After my husband's back surgery 2 years ago he had the same thing you are describing. At first he was better, then terrible pain.

    The surgeon just dismissed it so I took him to Kerlan Jobe Clinic in Culver City. Dr. Dillon immediately did a myelogram and found the synovial cyst.

    Another doctor gave him a cortisone injection into the cyst and he has been pain free ever since.

    Dr. Dillon said these cysts are common after surgery. You can check out the website for Kerlan Jobe. They are world famous and handle most of the professional sports teams.
    [This Message was Edited on 06/19/2008]
  4. TinaJones

    TinaJones New Member


    Haven't posted in a long time, due to moving from CO back to CA. I've been sick for about 5 years now; on opiods for about 4 years. Made the normal progression from a few Vicoden per day; to Percocet; MS Contin; Fentanyl Patches to Actiq (instant release Fentanyl). I've basically been on just about everything.

    My pain management doctor suggested the pump for me in mid 2006. I spent MANY hours researching it until I finally decided to do it in early 2007.

    I was about to have the pump put in when we had to move. I'm now in the process of getting insurance approval (again) and will have the pump put in soon.

    The pump is usually filled with morphine, but it can also be filled with hydromorphone (Dilaudid) and Fentanyl. I will be getting it filled with Fentanyl since that medication seems to work best for me. The good thing is, like you said - you need such a minimal amount of medication because it's going in exactly where it is absorbed.

    Getting the pump involves a 1 to 3 day trial. If everything goes well, then the actual implantation can happen shortly thereafter. Although anything "surgical" involves some amount of risk - it seems to be a relatively straightforward procedure (but I've also had 6 c-sections, so my thinking may be warped) :)

    In terms of the pump being used for FM, I personally think it is a good option, but for someone who has exhausted all of the oral meds. I personally have not found anyone online who's had the pump only for FM. I'm sure someone exists - and if you come across anyone - I'd love to hear their story. Most people seem to have other issues plus FM (which is what I have). BTW, I don't mean that statement to undermine the pain that just fibromyalgia brings; I KNOW it is hugely debilitating and I'm sure there are many with only a FM diagnosis that would qualify for the pump.

    Hope that helps a little bit :) I plan to post my experiences - if I ever get this thing implanted :) Good luck on your research and I wish you well --Tina
  5. TinaJones

    TinaJones New Member

    Bumping this for Blue :)
  6. wanderingbluedragon

    wanderingbluedragon New Member

    I would be hugely interested to know how it goes tina. Thank you guys for your responses. Like I said, I can't even get the doctors here to acknowledge that I have pretty severe pain.

    I would love to try things that would help other than having an implant put in. But maybe my willingness to go that far says how much pain I really am in.

    I recently attempted suicide because I just couldn't see living each day in this kind of pain and being totally ignored by doctors and treated like a druggie when I hardly take anything.

    It's hard to admit that, but I am trying to find a way to cope because obviously I'm not doing that well.

    No worries, I'm out of the woods at the moment and am going to therapy.

    I know that it just has to get better. I am just looking for something to take the edge off so I can deal with this better.

    Ack, sorry for going on and on about that. I really appreciate your opinion on the matter. I am looking in to having an EMG and nerve conduction study.


  7. TinaJones

    TinaJones New Member

    Sorry - it's been a few days since I've been online; so just read your response. Thanks for your honesty. To say I can relate is an understatement. I know a bunch of people here can relate. I'm glad to hear you are going to therapy; having some type of outlet (therapy, these boards, etc.) is SO important.

    Don't apologize for going on and on - that's what these boards are for :)

    I really pray that you - and everyone here - finds a good, compassionate doctor. It is the key to everything. I've been to hell and back, weeding through horrible experiences with doctors. My life was falling apart with six children and a debilitating disease; it wasn't until I found a good medical support system plus confidence in myself (of knowing that I AM sick and in REAL pain) that things improved. I am still as sick (if not worse), and this journey took about four years - but life is better because of the support I now have.

    I wish the same for everyone here... --Tina
  8. baanders

    baanders New Member

    Trying to get an intrathecal pain pump at Hopkins (live in Maryland). Severe pain last 7 years. I wish I could run through a field or hold a baby or run with my dogs, or take vacations, etc.

    One secretary said, "We don't treat fibromyalgia." It scared me because I have other issues: bleeding ulcers due to NSAID use, sciatica from piriformis syndrome, painful peripheral neuritis in the feet, plantar fasciitis, OA in spine with bone spurs, Painful Battery to left shoulder and neck 15 years ago, OA in my knees, ovarian cysts. Isn't that enough to qualify?

    Instead of giving me an appt. with a neurosurgeon so he can look at me and assess me, the secretaries of the surgeons said that the chief neurosurgeon and specialty neurosurgeon would only review my medical records and scans (the scans reveal no problems), then give me the scary call to say "yes or no".

    Thanks for your input ladies :) and gentlemen.

    [This Message was Edited on 07/30/2008]
    [This Message was Edited on 07/30/2008]
  9. TinaJones

    TinaJones New Member

  10. TinaJones

    TinaJones New Member


    Completely can relate to your post, unfortunately. I could share a million things with you, but I'll try to tell you what I think might help you the most. And then if you have questions - let me know. BTW, I go in for my pump trial in two weeks. I'll post how it goes.

    I've been severely ill for almost five years - with POTS, dysautonomia, chronic pain issues (including fibro, migraines, severe carpal tunnel syndrome), etc etc. I've been on every pain medicine (which includes narcotics, anti-inflammatories, nerve meds, etc).

    About two years ago, I found a wonderful PM doctor. After seeing all of the meds I've tried, and how my tolerance to those is just growing and growing - he suggested the drug pump. At the time, I wasn't ready. Within six months (and much research) - I was definitely ready! Well, insurance issues and then a move from CO to CA made the pump have to wait.

    So, I'm two weeks away from the trial. My PM here is wonderful, but doesn't do implantation of the pump. I had to see his partner. At first, he saw that I had "Fibromyalgia" - and basically went on to say that he didn't think that anyone in this country has a drug pump for fibro. But, after reviewing my other diagnosis and seeing my medicine journey - he decided to proceed with the trial. He just doesn't want me to get my hopes up that this will "solve everything".

    I think I have VERY real expectations. I would seriously be happy if I could be at a 6 to 7 on the pain scale, instead of my now 8 to 9. I have six kids (ages 4 to 13, all boys) - it is a quality of life issue.

    So...I guess from my own experience - I hope that they review your whole chart and see your other issues, instead of just the fibro (not that this isn't enough, but you know what I mean, I hope!). If you get denied, I would definitely push for an appointment to see someone in person and explain that you have multiple pain issues, that you've had them for many years and, like I said, that it is a quality of life issue.

    Just out of curiousity, have you tried most of the meds? Do they even work for you? Side effects? Like I said, let me know if you have any other specific questions...

    Hope some of this helped!
    --Tina Jones
  11. dragon06

    dragon06 New Member

    There was someone in the chatroom that had had this procedure done. I am not sure if she posts on this board or not. She seemed to be tolerating it well...last time I saw her in chat they were still working on getting the right dose.
  12. baanders

    baanders New Member

    I definately understand your level of pain, but who told you your pain may only drop 2 points? And then why would you get a pump if your pain would only drop 2 points? That doesn't make sense.

    I know you are really suffering, but whoever told you this must be fooling themselves.

    I am very concerned now about myself. Why would I do this if my pain would only drop 2 points?

    I don't mean to be rude at all. It is a surgical procedure with risks. I have both of our best interests at heart, sincerely. I'm concerned for you and me, and all of our friends here.

    My other question is, what pain clinic are you going to? I may need to fly out there. I live in Maryland.

    Thank you, dear. I know everything's going to go just fine. I'm happy someone cares about you.

    [This Message was Edited on 07/31/2008]
    [This Message was Edited on 07/31/2008]
  13. TinaJones

    TinaJones New Member

    Hi... Re: dropping two points on the pain scale - those were my own words. Many people in chronic pain hear "drug pump" and think it is a miracle cure and that it rids you of any pain. Doctors seems to very concerned about a patient's expectation of getting a drug pump. In Colorado and here in California - you have to get a psych clearance before you can get the pump. One of the reasons is to confirm that you understand that the goal is pain reduction, NOT to be "pain-free".

    I was just trying to stress that I DO have very real expectations and that I'm not thinking I'm going to get it implanted and be "cured" from chronic pain.

    My daily pain lingers at around an 8 out of 10. This is despite being on a hefty dose of narcotics. They have been playing around with my meds, but I'm on the equivalent of over 500mg of morphine. For almost two years, I was at twice this dose - I was taking Avinza 480mg/daily plus Actiq (fentanyl lollipop) 1200 mcgs/3x day. My reason for reduction is that we switched insurances when we moved, and they wouldn't cover the Actiq. But that's another story.

    Anyway, back to the pump! Not only am I on a heavy narcotic load, I have side effects to the meds. They are tearing up my stomach big time. I go to the hospital on a monthly basis for fluids, as I get dehydrated from the vomiting.

    So, I've exhausted every oral pain med known to man, in about every dose possible. I have side effects from the high doses of meds I'm on. I've tried trigger point injections, nerve blocks, physical therapy, PNT, etc etc.

    For me, I would be very happy to reduce my pain by two points, with no side effects. I'm obviously hoping for MORE than that; but, for me, actually anything would be better than what I've dealt with for the past five years.

    Re: the pain clinic I go to - I'm in the Bay Area. There are many good PM clinics around here, thankfully. The problem with traveling somewhere to get the pump implanted (and I don't even know if a doc would take an out-of-state patient, for this procedure) is, once the pump is implanted, you have to work closely with your doctor to get the right dose titrated. This can take weeks or months.

    Anyway, hope these thoughts came out straight and that it cleared up some of the "confusion". :) Let me know if you have any other questions!

    Take care, Tina Jones

  14. TinaJones

    TinaJones New Member

  15. TinaJones

    TinaJones New Member

    One more thought -

    The three main narcotics for the drug pump are morphine, hydromorphone (Dilaudid) and Fentanyl. After much research, my doc is first trying hydromorphone (combined with some numbing/nerve meds). I've built up a huge tolerance to morphine.

    So - that left hydromorphone and fentanyl. My doctor explained that Dilaudid is more hydrophilic (water-loving) and circulates through the body more - and better for wide-spread pain. Fentanyl is lipidphilic (fat-loving...and it would really love my body!!) - so it tends to work better for isolated pain, particularly low back pain. That being said, I've used oral Fentanyl (via Actiq and Fentora) and it did work well....

    Anyway - I'll post more after my trial.
    Take good care everyone,
    Tina Jones

  16. baanders

    baanders New Member

    I'm very happy for you. I'm trilled for you! Yippee! I wish I lived in your area. California seems to always be the first state with innovative treatments due to the great facilities there.

    I'm so scared. I hope you could alleviate my anxieties. I guess you can tell I'm scared. 6 months ago I had bone pain everywhere and couldn't take care of myself. I also have been on every pain killer known to man, except no way near in the doses you have,

    I'm so sorry you go to the hospital with vomiting so much
    :( You sound like such a GOOD person. I've had steroid epidurals, steroidal shots, a nerve block, nothing works in those areas.

    Today, the chief Johns Hopkins Neurosurgeon turned me away for even a consultation for a pump(a counselor on a crisis hotline told me that's so he can make room for patients who will require surgery, see more patients in a day, and make more money. DO YOU AGREE TINA?

    Anyway, he referred me to Hopkins neurology (not neurosurgery) and their chronic pain clinic (like i've said, I've tried every drug under the sun, including pain mngt. and neurology consults elsewhere, but not at Hopkins). The secretary said that if those doctors felt I was a good candidate, then THEY could SUGGEST REFERRAL for intrathecal pump.

    So I'm going this route. Hopkins is 45 minutes away plus 15 minutes parking.

    Am I DOING THE RIGHT THING? DO YOU HAVE ANY OTHER SUGGESTIONS ON HOW TO GET THIS PUMP? No one should have gone through all the high doses that you have and the debilitating side effects! I'm too frail to go what you've been through.

    I saw on your profile that you are a Christian. I am too. I'm 35, too, I don't understand where God is right now, it seems he's not listening to my prayers AT ALL. So far, Drs. think i'm faking this illness or want drugs for a high. I keep praying that God would lead me to the right way. I've just been going through hell and emotional torment.

    blessings Tina, and I know your surgery will be a complete success. Please keep me posted. I care about you and you could help a lot of people out there.


    [This Message was Edited on 08/01/2008]
    [This Message was Edited on 08/01/2008]

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