My Intrathecal Drug Pump Trial Experience

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No Worries!
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Date Joined Sep 2011
Total Posts : 225
   Posted 11/9/2011 1:56 PM (GMT -6)   
Day One; Arrived @ hospital @ 7am, checked in rather quickly. Prep was same...wheeled to OR & stayed awake for entire 10 minute procedure. I laid on my stomach and anesthesiologist gave me a relaxing, numbing cocktail. Dr. stuck me with lidocaine to numb area where he then inserted a catheter (just above lumbar area). The catheter was guided under special x-ray up to my T1 spinal cord area. Catheter delivers micro amounts of morphine straight to spinal cord/fluid, which goes directly to the brain. I was done quickly...it took more time waiting in recovery for a bed!

Once settled in a room I met my pain management nurse who explained more of what to expect from the trial. I was encouraged to take frequents walks and try to recreate my pain so they can properly manage my doses, which they increased. I have to wear a pump the size of a 1.5 inch thick football, but slightly heavier, which is attached to my catheter going into my back.

I was doing fine until 6pm where I started having awful bad headaches. I was told I have a spinal fluid leak causing the headaches. Lying straight down on my back helps get rid of headache, but each time I got up it would come back. I was told this is a rare side effect that normally happens to women with less bod mass. I'm a male, so I'll take it as a compliment. I've had the dose increased several times and each time I have my vitals monitored every 15 minutes for an hour, than every 30 minutes, etc... So far, despite the terrible headaches I am doing well.

Today is day two (Wednesday) and I may go home later tonight or tmw morning? They want to remove the catheter due to the headaches, but feel I have had at least the desired goal of 50% pain reduction. I will let you know more later.

* The drug pump offers a major short cut from typical oral meds route through the digestive system, blood stream then into brain. The micro amounts, 1/100th of my oral pain meds., decreases side effects of oral meds.
**I hope this information helps others who are considering a Drug Pump.

straydog
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Date Joined Feb 2003
Total Posts : 11124
   Posted 11/9/2011 4:35 PM (GMT -6)   
Glad to hear that you feel it was a success, oh, so sorry about spinal headache, not good from what I have heard. Lets us know when you get released. Take care.
Moderator Chronic Pain Forum

CRPSpatient
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Date Joined Mar 2011
Total Posts : 1141
   Posted 11/9/2011 5:36 PM (GMT -6)   
Very sorry to hear about the spinal headache. Hope it resolves quickly. But great to hear that you feel it's helped.

Take care :)
Laura
CRPS since 1999, diagnosed in 2005 and since spread to full body, spasms, dystonia & contractures, gastroparesis, orthostatic hypotension,bradycardia/tachycardia, bone spurs, bursitis, carpal tunnel syndrome, osteoporosis, osteopenia.

On Oxycontin/Endone, Topamax, Mobic, Magnesium, Florinef, Midodrine, Somac, Cipramil. Have SCS, intrathecal pump with baclofen & bupivacaine and doing physio

krw135
Regular Member


Date Joined Mar 2010
Total Posts : 183
   Posted 11/9/2011 5:41 PM (GMT -6)   
Have they said anything about a blood patch? After a spinal tab I had the worst headache ever. Like you lying flat helped, but realisticly that is very hard to do for long periods of time. I didn't have the pump so I don't know how it would work with that. But once they did the blood patch my head was much better.

Hope they figure something out for you. Keep us posted!
I am a 30 year old female. Have had problems with Crohns/Colitis since 1997. Once I had my colon removed things got a little better. Until about 2 years ago. I just got my port placement and will start Remicaid treatments soon:)
I have awful tummy pain and joint pain as well as female issues.

No Worries!
Regular Member


Date Joined Sep 2011
Total Posts : 225
   Posted 11/9/2011 6:38 PM (GMT -6)   
I'm doing well, thanks. I will have the catheter removed tmw morning and have a blood patch then. A blood patch is taken blood from my arm and injecting it in the hole made in my spinal cord where its leaking spinal fluid. Quick headache release...down side is danger of infection. I will stay in hospital a couple of hours then released once my wife can pick me up. I am good to go for the pump!

Charles
Say what you mean and do what you say. Integrity and Pride are never taken away... They are given away. Stay true to yourself and embrace Karma!

sore42long
Regular Member


Date Joined Apr 2011
Total Posts : 235
   Posted 11/9/2011 10:41 PM (GMT -6)   
I hope the headaches go soon!I think its great! sure easier then taking pills all the time.Please keep posting your progress with it ,your the only person I have heard of having this.I do live in canada not sure if we have pumps like that available.Take care

sos007
Veteran Member


Date Joined Nov 2011
Total Posts : 615
   Posted 11/10/2011 12:13 AM (GMT -6)   
hey whats done.....glad to here u are all set with your pump. I do not envy you with that headache, nothing worse than a spinal headache. Hope your feeling better...Keep in touch....Amy

No Worries!
Regular Member


Date Joined Sep 2011
Total Posts : 225
   Posted 11/11/2011 9:55 PM (GMT -6)   
Hey everyone,

I was discharged from the hospital last night, Thursday, which is a day earlier than planned.  I had a pain management Nurse assigned to me during the entire trial.  Everyday she checked my progress and adjusted the doses based on my pain level.  Despite the pain, I walked all over the hospital in an honest effort to ensure my pain was being covered by the drug pump. I wasn't supposed to, but I took the stairs every night visiting floor to floor and desperate for fresh air I even managed to walk outside into the parking lot!  There was many times where I was light headed and lost my balance, but luckily I never fell.

No Worries!
Regular Member


Date Joined Sep 2011
Total Posts : 225
   Posted 11/11/2011 9:56 PM (GMT -6)   
The Drug Pump was removed in the morning while in my hospital bed...no big deal. My pain management Nurse removed it by simply removing one stitch, pulling the catheter out and putting a bandaid on.  Then I had to lay straight on my back for at least an hour.  One hour later I was transported to the Pain Management Office in the hospital where I had the blood patch.  
I was put on an operating table on my belly.  Using X-ray, my doctor located the spinal fluid leak causing my horrible headache.  He numbed my back, inserted a needle then took 20ml of blood from my arm and injected it into my spinal column where it formed a blood clot and stopped the leak.  I was then returned to my room and had to lay straight on my back for another 2 hours.  Once the blood patch was performed I felt an almost immediate relief from my very, very painful headache.  I have to take it easy for the next 4 days or I could blow the blood clot and my spinal headache will return. I just wish my wife could understand this.
Say what you mean and do what you say. Integrity and Pride are never taken away... They are given away. Stay true to yourself and embrace Karma!

No Worries!
Regular Member


Date Joined Sep 2011
Total Posts : 225
   Posted 11/11/2011 10:00 PM (GMT -6)   
Returning to oral medication after having the Drug Pump really blows.  After the Drug Pump was removed they gave me oral pain meds while I was still in the hospital until 7 pm.  When I got home I took my regular handful of pain meds before going straight to bed.  
Everyone knows no one sleeps in the hospital.  It didn't matter to me, since I have insomnia.  It was 5:31am Thursday morning when I couldn't take it anymore finally asked the regular Nurse for something to help me sleep.  I have the largest dose of Ambien, but it seldom helps me sleep. The Nurse gave me an injection of Benadryl and it worked very well! I need this for home and plan to ask my doctor if it's possible.
Say what you mean and do what you say. Integrity and Pride are never taken away... They are given away. Stay true to yourself and embrace Karma!

No Worries!
Regular Member


Date Joined Sep 2011
Total Posts : 225
   Posted 11/11/2011 10:03 PM (GMT -6)   
I told my Pain Management Nurse I was still concerned about whether or not the final dosage I was receiving would be strong enough to cover my pain once I return home and increase my activities.  She assured me that my dosage can and usually is increased along the way.  I still had pain when using the Drug Pump, but I believe it gave me approximately 70% relief.  The goal for the trial was to have 50% pain relief or greater.  For the first time in over a year I am starting to think about doing more of the things I enjoyed before my injuries.  Heck, I may be able to ski this year? Grant it may be just the bunny slope, but I couldn't ski last year.  For me, the Drug Pump offers me hope...something I haven't had in a long time!  I hope I can put off my Lumbar Fusion surgery, get a full time job, travel further and more often, finally finish writing my book, etc...

I hope my experience with the Drug Pump trial can help others.  Doctors have different methods and protocols for conducting Drug Pump trials, so keep this in mind.  Feel free to email me if you want to discuss the Drug Pump in more detail, just label the Subject as Drug Pump or some other identifier or I may delete your email.

No Worries!
Regular Member


Date Joined Sep 2011
Total Posts : 225
   Posted 11/11/2011 10:56 PM (GMT -6)   
Hey sore42long,

If you think from what I've posted that the Drug Pump might help you, ask your doctor about it. Do you have a Pain Management (PM) doctor? It wouldn't hurt to ask and hopefully it will work for you too.

My PM doctor and the hospital have a contact with Medtronic, which is one of several companies that make Drug Pumps and Spinal Cord Stimulator (SCS). I already have one Medtronic neurostimulator implanted to help control my bladder disorder. To to www.medtronic.com and you can see pictures of what the devices look like. Look under the physicians tab to see the specific measurement, recommended implant positions, etc. I'm not recommending Medtronic devices, it just happens to be the choice of both my doctors, so I will have two in me soon enough.

Let me know if you find a specialist who can help you look into this option in Canada. Good luck!
Say what you mean and do what you say. Integrity and Pride are never taken away... They are given away. Stay true to yourself and embrace Karma!

spinal soldier
Veteran Member


Date Joined Dec 2009
Total Posts : 615
   Posted 11/12/2011 1:31 AM (GMT -6)   
just a thought, if they will work with you on the opioid the intrathecal pump is administering maybe Dilaudid or one of the ultimate best for many patients, Sufentanil, sufentanil is just a version of fentanyl but much more potent. a cocktail of Baclofen and Clonidine with the opioid greatly increases pain relief. Bupivicaine which i think is Marcaine [brand] is a long acting local. Ropivicaine is used in epidurals for child birth that may be the most effective. anyway best of luck with your med. pump, i am ready for a trial myself.

No Worries!
Regular Member


Date Joined Sep 2011
Total Posts : 225
   Posted 11/13/2011 6:17 PM (GMT -6)   
Spinal soldier,

Thanks for the info. My trial went well with the Morphine so far. Once the pump is implanted my doctor will work with me to increase the Meds or possibly change the type of medicines depending on future need.

When are you planning to have your trial? I wish you luck with it. I certainly hope you don't suffer from a spinal headache like me! I had a spinal cord fluid leak where the doctor placed the catheter. As a result, when I sit or Stanford I get this horrible spinal headache. They fixed it last Thursday in the hospital by doing a blood patch.

Unfortunately, the blood patch blew and I've been suffering from the spinal headache since Saturday morning. I can't keep anything solid or liquid down and keep throwing up. I can't even keep my pain Meds down! I'm stuck lying in bed, which is the only form of relief, until Monday where I need to return to the hospital for another blood patch. I honestly hope they keep me in the hospital a few days to make sure I don't mess up the blood clot and have it again!

I did warn my doctor that I am "Murphys Law".
Say what you mean and do what you say. Integrity and Pride are never taken away... They are given away. Stay true to yourself and embrace Karma!

Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 11/13/2011 11:16 PM (GMT -6)   
What's done is done....

I'm sorry that you got a spinal headache from the trial... I know how miserable that is :( I had my pain pump trial back in '08 - and got meningitis from leakage. I was miserable, to put it lightly. I spent over 3 weeks in the hospital. So depressing for that to happen after a successful trial. Anyhow, I'm "Murphy's Law", too - meaning if it "can" happen, it WILL happen to me - lol.

I really hope the blood patch works - and that you get rid of that awful headache. Keep us posted....

--Tina

No Worries!
Regular Member


Date Joined Sep 2011
Total Posts : 225
   Posted 11/14/2011 7:45 PM (GMT -6)   
I just got home from the hospital where I spent the entire afternoon and evening getting my second (pray last) blood patch! I don't want to suffer through another spinal headache ever again!!!

I had my first solid food tonight since Saturday lunch time. I couldn't hold anything down including my pain Meds. So not only was I dehydrated, I was also suffering from withdrawals from my pain Meds!

straydog
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Date Joined Feb 2003
Total Posts : 11124
   Posted 11/15/2011 2:39 PM (GMT -6)   
Hi Charles, I am so sorry to hear that you had to go back for a second blood patch, how awful. I do hope by now that you are feeling better and things are getting back to normal for you.

Do you have an appt to see the dr to decide when they will do the implant? Please do keep us posted on how you are coming along. Take care.
Moderator Chronic Pain Forum

No Worries!
Regular Member


Date Joined Sep 2011
Total Posts : 225
   Posted 11/16/2011 10:15 PM (GMT -6)   
Hey Straydog,
 
Thanks, I'm feeling much better now.  Although I have to admit I am very concerned I will blow my 2nd blood patch still.  I don't think I can go through another spinal headache, at least not one that I have to suffer through during another weekend!
 
The funniest thing happened, okay maybe not so funny, but I didn't get hurt, so I guess its okay.  I was in my second day at the hospital during my Drug Pump Trial when a Nurse from my PCP office called my cell phone and asked me if I had received their previous message they left on my home phone stating my chest X-ray showed a small mass on my left lung and I was not to undergo surgery.  HELLO! I told them for the past two years that my home phone is no good and to only use my cell phone. I wonder why they didn't call the Doctor who was requesting my Pre-Op and let him know I shouldn't have the surgery. 
 
Totally not cool, but you should have seen my expression when the Nurse called.  I hung up the phone and laughed and laughed...I needed a good laugh.  Heck, I still do.  I was told today that my permanent Drug Pump implant surgery is set for November 28th.  Of course this is pending what my CAT Scan shows re: my lung.  No worries.

NiNi53
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Date Joined Mar 2011
Total Posts : 816
   Posted 11/17/2011 11:53 AM (GMT -6)   
Hi, I have just about made up my mind about having the test done after my baby girl gets married in June 2012, after reading your posts on it (they were very helpful, thanks very much).  I am going to go for it.  I have a Medtronics Neuro-stim installed that failed twice.  But I think that was supposed to happen, I had wanted to pump to begin with, then allowed myself to be talked into the neurostim.  So I believe all along that I should have gone with my first thought which was to get the pump.
 
Thank you, you did a good job of informing all the pro and con's of the entire process, between you and Straydog, who I believe also has had good results with the pump, I will be jumping on that bandwagon this summer.  So thankyou, both of you your input has been very valueable.  As was everyone else's.
 
Take care, good luck, oh also, I had one of those headaches from an injection back in the 1990's somewhere in there, it was easily taken care of  the very day, as it happens from time to time.  But its was "fixed" and I had no more trouble at least with the headaches.
 
Again, good luck, take care,
 
Kathy/nini
degenerative disc disease, fibromyalgia, osteoarthritis, neuropathy, lumbar laminectomy july 1998 no help, rechargeable neurostimulator unit low right back w/lead wires to left side and right leg unit not working just sitting there.i am 57 years young in may will turn 58. i have 2 grown daughters, 25 and 29. i have 2 grandchildren, 9 year old grandaughter and 5 yr. old grandson

No Worries!
Regular Member


Date Joined Sep 2011
Total Posts : 225
   Posted 11/17/2011 9:16 PM (GMT -6)   
NiNi53,

Thanks, I was hoping I could help others from my experiences. I will continue to post my experiences from getting the permanent Drug Pump implant, which is scheduled for November 28, 2011. Please keep in mind that each doctor conducts their trials in different ways, but I believe they all have the similar external pump and temporary catheter hook up. The time they take for the trial may vary. It was determined on Thursday that I was a candidate for the permanent pump, so I was able to leave the hospital one day ahead of schedule.

As for the spinal headaches, they are rare and I have had a run of bad luck lately. I had my 2nd blood patch on Monday and I should be out of the woods by tomorrow. I couldn't help blowing the first blood cot, since the large doses of narcotic pain meds caused extreme constipation. The day after returning home I had my first b/m in about 5 to 7 days. It was difficult not to strain and so I did of course, which resulted in a very bad, bad headache. It wasn't until Saturday afternoon before I felt the full force of the spinal headache. Regrettably I had to suffer through violent bouts of nausea, vomiting, dehydration and withdrawals until Monday afternoon. I apologize for perhaps sharing too much information, but the side effects from all my oral meds is one of the primary reasons for wanting a Drug Pump and I'm sure I am not the only onen with rediculuos constipation. No matter, my mother once said what doesn't kill you, helps to build character! NiNi53, please keep us informed of your experiences and I wish you success with your Drug Pump trial minus any spinal headaches!

NiNi53
Veteran Member


Date Joined Mar 2011
Total Posts : 816
   Posted 11/17/2011 10:23 PM (GMT -6)   
I will most certainly do so, as you have kept all of us informed, I will follow suit and try to do my best.  Let me give a little backround, in May 2009, I had a trial and then a neurostim installed, the trial was not much use and the first time it was installed it was installed to deep, so the machine could not be charged.  In July of 2009, 2nd permanent installation, was done, sadly by that time there was to much scar tissue and once again the unit could not be charged.  At that point, I opted out of the entire thing, now on the right side of my lower back is a useless piece of something whatever they use and it will never work due to the scar tissue.  I was going back and forth about what I wanted to do as at the beginning of this entire I was much more interested in the pump than the SCS.  But I allowed myself to be talked out of the pump and into the scs on the argument that the pump as the years went by would have to continue to increase the amount of meds being used.   Had I thought a little longer at all, I would have realized that was going to happen anyway either by pump or oral.
 
So,  I have been in limbo for awhile and was leaning again toward the pump, when I saw you were going to take use through the process, I have to thank you, that was very helpful.  Also I knew Straydog had a pump and was very happy with it.  My mind is made up, after my daughter gets married this June, I will have the trial and hopefully be able to have it permanently installed.  I will wait because I want to make sure I am fine when I walk her down the aisle.  Since her father had nothing to do with raising her neither financially nor emotionally, I get that priviledge, if you dont do the work, why should you get the reward? At any rate that was her decision not mine, and she made it.
 
One more story on the uncomfortable feelings I think we have all had re:the bathroom.  When I began to take narcotic meds on a regulor basis, I had no idea that constipation was an issue.  Was it ever, in the summer of 1998, July I had a lumbar laminictomy, which sadly did not work, approx. 10 days after that surgery, I had the worse pain ever in the entire world on the left side front sort of where the ovaries would be.  This pain sent me to the emergency room several times, finally I was scheduled for a hysterectomy even though nothing showed up on the sonogram, thank goodness one surgeon had the good sense to stick a needle in that area to numb it and found it to be a thing called (I will try to spell this) spegalian hernia, caused by, you guessed it pushing, pushing pushing. That was a most painful lesson to learn.
 
Sorry I went a way over long that time, but it needed to be told, for those of you just starting out, careful of all the side effects of so many things.
 
Good Luck and thank you for sharing, when I go for mine, I will keep all informed, (I promise not to run on so long).
 
Kathy/nini
degenerative disc disease, fibromyalgia, osteoarthritis, neuropathy, lumbar laminectomy july 1998 no help, rechargeable neurostimulator unit low right back w/lead wires to left side and right leg unit not working just sitting there.i am 57 years young in may will turn 58. i have 2 grown daughters, 25 and 29. i have 2 grandchildren, 9 year old grandaughter and 5 yr. old grandson

No Worries!
Regular Member


Date Joined Sep 2011
Total Posts : 225
   Posted 11/21/2011 12:00 AM (GMT -6)   
NiNi,

I'm sorry about your misfortune regarding the SCS experience. It's difficult to believe that SCS's can be implanted too deep to work. I have a SCS for my bladder disorder and I was told that it would be implanted deep enough where it couldn't be seen and also difficult to actually feel. I was worried about losing weight and being able to see and feel it sticking out of my right, upper buttocks area, but was told not to worry. Even before the bandages came off I could easily feel the Stimulator. I still need to lose about 10-20 lbs and I'm sure that once I do I can probably see the Stimulator. Im also worried about future scar tissue when I need to have a new Stimulator/battery. I was told I will need to have a new battery every 3-5 years. Even if it's every 5 years, that's still going to be a lot of future surgeries and additional scar tissue. I worry that my SCS will be replaced too deep or non-responsive due to the scar tissue?

Can anyone who has had a few replacement surgeries address this issue and let me know what to expect in a few years. Thanks! My implant surgery for a Drug Pump is scheduled for November 28, so I'm also wondering about how that's going to look. My doctor said he typically puts them in the abdomen area, but has also put it in the upper buttocks area. I will have it paced in my abdomen on my left side...you know, try to even it out a bit. LOL. I am sure I will be able to see the drug pump, which is about the size of a hockey puck! I would love to hear from others who have a Drug Pump. I have too many scars on my body from surgeries and life lessons growing up, so I don't really care how I look, but my wife does. Hahahahaha!

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 11124
   Posted 11/21/2011 2:23 PM (GMT -6)   
Be sure yours is implanted above the belt line, most of them are done that way now because before the pumps were lower and known to flip & then had to be manually flipped back over which I imagine was not real pleasant. They flipped due to people cinching a belt to tight or too tight of pants on the waist. Mine is high up on the right side of my stomach. I don't even know its there anymore and once you have had yours awhile you will forget its there too.

Nope, I have never seen my pump, I can wear a shirt tucked in if I like and no one can see it. I had a horrible surgeon who did my surgery and the scar on my stomach and back is awful. I have lots of scars from surgeries but nothing compared to his handiwork.

Good luck on your implant day you will do well I am sure.
Moderator Chronic Pain Forum

tuttie
New Member


Date Joined Nov 2011
Total Posts : 4
   Posted 11/22/2011 8:03 PM (GMT -6)   
I am so nervous I am going to have the trial on 11/29 if you past the trial how long does it take to put in the permanent pump in?? I am glad I found this site it is very informative my question is also do they give you the same amount of meds that you are taking now I am on the patch and lollipops right now because I can not tolerate the meds by mouth with the problems with my stomach, I would like more information about this if anybody knows and what do they consider if you don't pass the trial??

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 11124
   Posted 11/22/2011 11:08 PM (GMT -6)   
Hi Tutti and welcome to the forum. As far as how long after the trial can a person have the permanent pump implanted, that depends on how quick they can get your insurance to approve the surgery and the surgeon's schedule. Just a wild guess here but I am guessing some where between 3-6 weeks. If I am remembering correctly my surgery lasted about 1 1/2 hours.

They consider the trial to be a success if your pain level is reduced by at least 50%. I think you are asking what a dr would do if your did not have a successful trial and that I cannot answer.So far everyone that I know of that has done the trial was a success.

No, you will more than likely will be on much less pain medication with the pump because the medication used in pumps is in a concentrated form and much stronger than oral medication. A lot of people with pumps have a combination of different medications in their pumps, I have 4 in mine. There really is no way to compare oral medication to medications used in the pump. Oral meds has fillers and such in them, where as with the pump there is none of that.

Tutti, if you have not visited Medtronics.com, do yourself a favor and visit their website. They have a really great informative site that tells a lot of info about pumps, as they are one of the leading pump makers.

Ask any question you may have and we will try our best to help you out.

Good luck on the trial you will do great. Take care.
Moderator Chronic Pain Forum
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