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Seeking info. for an upcoming Intrathecal Drug Pump Trial Phase

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Posted 11/3/2011 5:15 AM (GMT 0)

Hello Everyone,

Not many people have responded to my post.  Even so, I guess I have enough information to move forward, although I am a bit apprehensive.  I tend to write a novel when I post stuff and perhaps it's too much for most people to read it all?  Hahaha, I will try to post my experiences while I'm in the hospital using my iPAD2.  I won't have much else to do with my time, besides taking walks and doing whatever they ask me to do. 

I want to be as honest as possible during the trial phase to ensure that the Pump is going to work long term.  By the end of each night I am typically in lots of pain that my pain meds don't seem to touch.  I worry about being less active than usual while in the hospital and therefore not experiencing my typical pain by the evening and night time hours.  I was wondering how they work around this issue during the testing phase?

In case it is not known: I was injured on the job back on September 28, 2010 and they terminated me on June 12, 2011.  I am hoping to either settle my worker's Comp case of have my Hearing by November 22nd.  Either way, I need a four level Lumbar Fusion before my Doctors will release me back [excuse the pun!] to work.  After recovering I need to find a new job/career [desk job]. I meet with my Attorney this coming Friday to discuss settlement and I can only pray he is good at his job and realizes that my medical bills are ridiculously high.  I will let everyone in the CP blog know what happens.

I have insomnia and it seems to have become worse recently.  As a result, I tend to pass out around 3,4 or 5am [Eastern Standard Time, LOL].  Regardless, I always wake up with my wife at about 6am and I help get her coffee and other stuff ready for her daily commute to work.  Then I return to bed where I again pass out and sleep until around 9, 10, 11am.  I am alone most of the day during the week and I spend my waking hours going to my doctor's office, Pharmacy and PT appointments or I'm on the phone dealing with mounting medical bills.  Besides the pain, one of the worse side effects from the medication is the chronic constipation!  I can't do much towards exercising to help lose weight, besides walking, which I try to do every day.  Since I only have a bowel movement once or if I'm lucky, twice a week my weight fluctuates.  I have tried so many different over the counter and prescribed medications, but they only work a few weeks until my body builds a resistance to them.  I am now taking 2,3 plus Dulcolax tablets at night.  Sorry if I'm giving too much information, but I figured that anyone who has Chronic Pain and on narcotic pain meds have been where I am now.  This is one of the hopeful benefits I wish to receive from having the Drug Pump!

As for my recent surgery...on Halloween morning I had my permanent Interstim neurostimulator implanted after two weeks of a trial phase.  Today I had my first shower in over two weeks!  The surgery went well, except I told both my doctor and Anesthesiologist I didn't want to be put to sleep for the surgery.  My Doctor told me it was fine and I will have a local instead of general anesthetic, however I WOKE UP IN RECOVERY!  That was wrong and I'm still upset about it.  It was a relatively short and non-complicated surgery where all she had to do was install the permanent battery/stimulator and fine-tune the programs.  I figured I have had too many surgeries in the past two years and my body didn't need to go through yet another general anesthesia.  I have the permanent Interstim in for just three days and unfortunately it is not working as well as the test stimulator.  I was told by the Medtronic Patient Service that it's because of the trauma to my body during surgery and it usually improves in a few days.  I have a Post-Op appointment with my doctor in two weeks.  I'm not sure if I should bring up the fact that her patient's wishes during surgery were ignored?  After all, what's done is done, right? 

I did have a Medtronic Consultant during the trial phase and she was present during both surgeries.  After I woke up in Recovery she brought me the Patient Programmer and accessories and turned it on.  She told me to leave it on and that I didn't need to carry the programmer with me and should leave it home.  Although I know I don't or shouldn't need to change the programs once I find the one that works best for me, I think she's wrong about leaving it at home.  You never know when you might need to turn it off or sometimes turn it back on.  The sensations I feel now are much different than when I had the test stimulator.  I was told it's a typical experience with other patients, but the reason is unknown.  My Medtronic Consultant told me if I have any issues or problems not to contact her, but to either call my doctor or the Medtronic Patient Services.  I kind of wonder about what she does in between surgeries where she helps the doctor with setting the programs, if that at all.  Oh well, she's one less headache for me.  The people I speak to when I call Patient Services are much more friendlier, patient and knowledgeable.  I think it's cool that she gets to be present for surgeries and gets to meet many different patients.  Since I'm in the market for a new career I would love to have her job!  I think it would be much better to have a Consultant who has the same device implanted who can share their experiences.

Well, my stomach is a bit upset...I took some Phillips Milk of Magnesia and naturally my back is hurting from sitting too long and writing this novel.  I apologize for rambling on and on.  I will give it a rest for tonight and promise to answer any questions you or others may have.  I also hope to hear from other people who have a Drug Pump before my Drug Pump surgery/trial phase scheduled for November 8th.  It's now 1:00am...still not able to sleep...

Take care everyone!

Charles

 
Posted 11/3/2011 5:55 AM (GMT 0)
Charles,
Can I ask you why you are having both the pump and the stimulator implanted so closely together? I am a bit surprised that your pain management doctor approved doing what amounts to another surgery to do the trial for the pump so soon after your stimulator was permanently implanted. Especially given the potential for the leads to wind up being dislodged so easily after having them implanted. The recommendation is no bending , lifting or twisting for the first 6-12 weeks post op.
I am concerned for your wellbeing, and it just seems to be a bit rushed. It usually takes chronic pain patients several years, if not decades to get to what are considered to be the "end of the road" in pain management procedures/options.
It is true that often, in fact most patients, find that once the leads and stimulator battery pack are permanently implanted, there is a reduction in the pain relief that the patient recieved during the trial. Sometimes, it improves and sometimes it does not. When it does not, it seems to have some to do with the scarring in of the leads and whether or not, the scar tissue impedes the conduction of the leads.
As to what will happen after the implanting of the thecal canula during the trial- it depends largely on the doctor who is conducting the trial. There are some doctors who want the patient to stay in bed during the testing and will keep the patient in the hospital during it, and others who want the patient moving around , doing as much walking as the trial duration will allow, others who send the patient home for a couple of days during the trial to see how the pain relief is during their modified normal activities and others who don't do more than a 12 hour trial- implant the catheter in the early morning, and the trial consists of an injection of a pain med and then see how the pain relief is and then remove the catheter after it is over and send the patient home the same day.......so it is something that you really need to talk to the doctor performing the test to find out , how exactly your trial will be done and whether or not you will be inpatient or out.
Sandi
Posted 11/3/2011 6:46 AM (GMT 0)
Charles the reason for little response about the pump is because I think as of right now, I am the only person here at the CP forum with a pump. Wait, we do have one lady here that has Baclofen in her pump for spasticity and I am thinking she has been really ill here lately.

Again, you should give our Search feature here at the forum a look, you will find lots of info there too.

Wow, the Medtronics rep sounded pretty snide to me, lol. From what I have read here on the stims usually whoever the rep is during the final implant was also the one that met you at the drs office to do any fine tuning and the patient has this persons phone number to contact them about the unit not the dr!!! Most drs referred all questions back to the rep.

Yes, constipation is one of the bad side effects of narcotics, however, many of us are able to get by just fine by eating 5-6 prunes a day and be able to stay in control of things. This is after trying all the OTC products to no avail. So, if you can handle some prunes which I happen to love, lol. you really should give them a try.

Take care.
Posted 11/3/2011 7:35 AM (GMT 0)
Sandi,
My PM doctor is aware of my recent Interstim Implant surgery. I'm actually doing very well...little pain at all from the implant! I had my Pre-Op appt. yesterday with my PCP and he gave me the thumbs up for surgery. I am unemployed and remain at home during the day. The only activity I can tolerate is short walks, so I don't bend, I don't lift heavy objects and I don't twist while I shout! Hahaha... As for it being a bit rushed...again my PM doctor is aware of my medical history. He believes that Drug Pumps and Neurostimulators should not be considered only for "end of the road" or "last resort" and for "failed back surgeries".

My Orthopedic Surgeon has tried every sort of conservative treatment before deciding that I would benefit from a 4-Level Lumbar Fusion. To me and my PM doctor, ripping out my dics and installing rods, pins and screws, etc. is actually the "end of the road" in options for me. I can always have the pump removed from my body, but I can't have my discs replaced...once they are gone...what's done is DONE. Therefore we will try the Drug Pump, which will also help me with my thoracic pain from three herniated discs, which my surgeon will not operate on. So regardless of whether I end up having the 4-Level Lumbar Fusion, the Drug Pump will hopefully decrease my side effects and pain.
As for the trial itself, I know I will be admitted for the trial period. I know I will have the catheter surgically installed in the morning then be admitted for a period of time ranging from just one day to possibly four days. What I am not certain of is how they intend to measure the balance in pain meds with my typical daily pain while I am in the hospital and not doing my typical activities, which to be honest is not much at all. I was told that I will be allowed to walk around the hospital as much as I can tolerate and knowing that I will have the IV with me and I use a cane to help me walk..that should be fun!

Straydog,
I love reading your posts, replies and advice to others and me. Thank you! I have read a lot of the old posts regarding the Drug Pumps, but they didn't answer the question I have about being admitted and measuring the difference in my pain related to my daily activities. But as I said above, I mostly only walk for activity, so I bought slippers and will roam the halls as much as I can to replicate my activities at home and produce the same pain to see if the pain meds work. I intend to post my experience with the Drug Pump Trial so I can help those people who are considering the trial or will go through it like me.

Yes, the Medtronic Rep could practice her bed-side manners. I tend not to waste my energy with people like that, so I will gladly call the Patient Services Department rather than put up with her attitude. I just wish I could have her job! LOL. I tried drinking Prune Juice and just about puked! I threw out the rest just the other day. I tried Milk of Mag. last night [it's not 3:21am] and if that doesn't work I know the Dulcolax works if I take 3 plus tablets, but the stomach aches and cramps are horrible. I don't eat much, especially since my cervical surgery...my throat still bothers me and it's still difficult to swallow. Again, I'm praying the Drug Pump works for me and I can decrease my constipation and other side effects.

I hope you are both feeling pain free and happy!

Sending my best forward...

Charles
Posted 11/3/2011 7:42 AM (GMT 0)
Hello everyone,

Feel free to email me directly if you want. Just put in the Subject window something indicating you are from Healing Well or regarding Chronic Pain. I will reply as soon as possible.

It's either very late or extremely early, so I need to go lay in bed and pretend to be normal, hahaha!

Sooner or later,

Charles
Posted 11/3/2011 8:19 AM (GMT 0)
Sandi,

Sorry, I just read your post again...my neurostimulator implant is not for my pain. I have a bladder disorder, so the "Interstim Therapy" neurostimulator stimulats the bladder and reconnects it to my brain so my brain knows when I am truly full and empty. I have suffered from a combination of Over Active Bladder (OAB) and Chronic Urinary Retention. My work injury has made it a lot worse. I have had to use a catheter to empty my bladder at times and other times I go to the bathroom sometimes 5-8 times IN ONE HOUR!!! Just like a neurostimulator for pain, this is not a cure and I am aware that there will be days where I will either go to the bathroom a lot or will need to self cath in order to void. My plate is full...hahaha!

I hope this helps clear up your concern about having a neurostimulator and soon after having a Drug Pump Trial/ hopeful implant. Trust me, I have given each serious thought and consider the pros better than the cons of having multiple foreign objects implanted in my body. I am actually dreading the first time I fly after all this.

Good Morning!
(4:19 am)

Charles
Posted 11/3/2011 2:33 PM (GMT 0)
Charles, I gag looking at prune juice in the stores, have never tasted it & have no desire to. However, with that being said, I do like prunes to eat out of the box, not cooked, that looks nasty too, lol. Give them a try in the box, you may be surprised at yourself,lol.
Posted 11/3/2011 2:34 PM (GMT 0)
Good morning Charles,
Thanks for clarifying things. You are right, I did confuse the interstim and a spinal stimulator. Sorry about that. I knew that I wasn't getting something right after I'd posted but for the life of me, couldn't recall what it was.....my almost 48 year old, mostly sleep deprived brain isn't as sharp as it once was.......LOL
Anyway, do you find that the interstim helps? I am curious because I have not one but two spinal cord injuries that effect my bladder and bowels so I am curious. I have become an expert at ISC, sadly.
Anyway, I would give my surgeon's office a call about how they are going to gauge the effectiveness of the pain relief from the trial versus your daily pain to decide if the trial is a positive outcome or a negative one.
I often wonder the same thing about how they can gauge the pain relief during the trials for the scs units as well as the pumps if activities are restricted or greatly reduced during the trials but no one has ever effectively answered that for me so if you do get an answer, please post what you find out.
I may be going down those roads myself at some point but so far am waiting it out as long as possible.
I do understand not wanting to go down the fusion road, especially for so many levels. The odds go down with more than one level, so if you do find yourself going down that road at some point in the future, try to get to your nearest big hospital to find yourself a top notch surgeon ( saying that from previous experience with two failed back surgeries so far- and facing a huge third one with even more risks down the road when I can no longer avoid it) .
I hope that your trial goes well and that you do find the pain relief that you seek. Have they told you whether or not there is any nerve damage? The one thing that would worry me is the length of time that any nerves are compressed for.
Sandi - in case, you can't tell, is a bit of a worry wart.....LOL
Posted 11/3/2011 8:37 PM (GMT 0)
I can honestly say even though I had a very short trial for the pump, 24 hours in the hospital, it was a huge success. The difference in my pain level was just incredible, it was like when I woke up I had no pain. I was shocked and even told my dr that I truly thought I had died and gone to heaven because for the first time in so many years I did not feel the pain.

I have heard that some drs will require the patient to decrease their meds prior to the trial so this may be something else to deal with for the trial.

My only regret about having the pump is I did not have a dr that knew enough about them to be handling patients with pumps, even though he told me he had this experience he did not. It was not until he quit pain mgt and found me my current dr that I can honestly say I have a dr that knows what she is doing. The dr must know medications and dosages as well, its not just the pumps that they need to know about. I suffered a great deal after my pump was put in simply due to ignorance on the part of my dr. The dosage he had in my pump is what they start patients out on and he told me no more increases that I was maxed out. I was far from being maxed out. My pump has since been doubled in the concentration form along with the actual dosage in the pump doubled. This is shy they say your dr can either make your pump a success or a failure.
Posted 11/4/2011 4:29 AM (GMT 0)
Hello Sandi and Straydog,

I guess we are forming a clique here, hahaha! I had a great day and a bad night, which is weird since I only had 2 1/2 hours sleep last night. I'm hoping tonight I can crash! I'm in bed right now with a heat pad on my back...too late for the meds to help, except I hope my Ambien.

Today was my first day with my new Physical Therapist and it was terrific! Even though I have developed a relationship with my previous Physical Therapist, change is nice. Besides my Doctor ordered "Dry Needling" as part of my PT and my regular Therapist is not trained in this. I have to say, it helped a lot! I wish I had it a year ago. Unfortunately she can't do dry needling in my thoracic spine area because the needles are long and there's a risk of puncturing the lungs. It's funny and sad that PT has become like a fix for me. I have to wait until next Monday for more treatment and that's if my &@$#% insurance allows additional visits!

I spoke wit the lady who schedules the surgeries and she has limited knowledge of what they actually do to the patients in the hospital, but she believes they are giving activities to do (with the Physical Therapists maybe?) and a lot of walking!!! Also, all I have to do is sit still for 30 minutes and I can recreate the incredible pain I feel in my thoracic/ left shoulder blade area mostly... This pain, which I have now is a 10 plus...brings tears to my eyes. I have to say, it's not something I would wish on anyone and I couldn't see this going on this way for years!

Anyways, since no one else can really tell me for sure what activities and things I will have to do during the trial, I'm going to have to be that guy! I will post what I am experiencing, hopefully each night, depending on how I feel.

Sandi, my Interstim Therapy stimulator has a lead that is placed in the S3 space and then extends to the nerves surrounding my bladder. I was hoping it would help mask the pain in my lumbar region, but that's not the case. I feel a sort of tingling/pulsating sensation in my pelvic floor region, which actually means I feel it in my annus and scrotum areas. No, for me it isn't like having a vibrator stimulating the area. I really felt it at first and it was a weird feeling. However, after a short period of time you get used to it quickly and forget about it.

During the trial period the sensation felt more like a hemroid, so I was glad the permanent implant doesn't feel the same way. However, it was with me for two weeks and I had to get used to it and weigh the good with the bad. So, again Sandi, the Interstim Therapy stimulator is specifically for voiding issues related to both urinating and bowel movements/ constipation. Unfortunately it has not helped me with my constipation :( heck, last night I drank 4 tablespoons (the max dosage) of Milk of Magnesium and not a little relief! Sandi, sorry but what is a ISC?

Stray dog, I believe my PM Doctor who will be doing the trial and hopefully the implant is one of the best in my area. When we met for the consult he truly listened to what I was saying and he saw the pain written all over my body. He recognized that I am playing an active role in trying to take myself off the narcotics and improve my quality of life. Also, the pain is so horrible I have nothing to loose. I honestly wished they could operate on my three herniated discs in my thoracic! Like I said, I have good days and bad days and sometimes a mixture like today.

As for possible permanent nerve damage to my left leg, which is very weak and painful in certain areas...yes, I think what I have could be too late to fix. However, this is why my surgeon wants to do the 4-level lumbar fusion. My new Physical Therapists said I should just do two at a time, because it's a huge operation. I realize this, but I figure since I lost my job, I want to get it all done at once and recover from it before. Find a new career/job. I don't want to have two done...find a good job and turn around 6 months later and say, sorry boss, but I need back surgery and will be out recovering for 3-6 months...please hold m new job for me! Besides, after experiencing the pain from the first two level fusion, I would most likely say no way!

I change health insurance in December and my wife's workplace doesn't have a Pre-existing medical condition Clause, so I'm covered right away. I just have to hope that the new insurance company has updated protocol and agrees to my 4-Level Lumbar Fusion operation and recovery. Oh yeah, recovery...my surgeon said I would stay in the hospital for a week then go home. However, since it's just my wife and me I know she won't be able to care for me alone. I would prefer to go into a medical rehab facility until I can take care of myself. Unfortunately that's a ways away and I have to give my poor body a. Real! If the Drug Pump Trial is a success i was told I will be scheduled for the permanent implant on either November 28 or 29th!

Ok...I'm going to try this sleep thing that everyone seems to love. Have a pan free and enjoyable day today! You see, it's now tomorrow! $&$@*#%#! I meet with my attorney in the afternoon and I'm not looking forward to the BS.

Later,

Charles
Posted 11/5/2011 2:50 AM (GMT 0)
Well guys today I had my meeting with my attorney to discuss my Worker's Comp case. I am a little embarrassed to admit that I can't remember half of what was said. As I've mentioned before, my short term memory is shot due to the high dosage of pain meds. I will have a settlement meeting on November 17th, but my attorney couldn't tell me when I would see my first check since I was terminated back in June. He told me that I need to realize that I won't be able to work for some time to come, due to my physical health and that my Lumbar surgery will have to be put off even further. He wasn't too confident that my lumbar injury would be settled under WC since I had a previous non-work related injury in a short time frame from my last work injury that took me out of work last year.

I do know that my Drug Pump trial is still on for next Tuesday and since I probably won't have my lumbar surgery for at least another 4-6 months, I can only pray the trial works!

Last night I actually got some sleep, but I work up feeling twice as tired??? I went to sleep, yes not passed out, around 1:30am and work up around 6am. I drank a lot of coffee during the day and downed several mini boxes of Nerd candy, which is basically colored sugar! You'd think I would be wide eye and jumping off the walls, but I still feel exhausted and can't keep my eyes open...until I go to bed!

My wife has a new Do This Or Else list for me to do tmw and she gets angry with me when I stare at her through my eyelids. She thinks I stay awake because I want to? I love her, but sometimes she has a weird way of showing her support. She tells me she is worried about me when she wakes up in the mornings and sees I haven't slept yet, but then she yells at me and calls me lazy when I drag myself around the house. It boggles my mind. I took my pain meds almost 2 hours ago and my back is still hurting. Ahhhhhhh, thanks for reading (listening) I feel better. I guess I should go lay in bed for the next whatever hours until I sleep.

I hope everyone is pain free and happy!

Charles
Posted 11/6/2011 3:11 AM (GMT 0)
Charles, sorry to hear that your wife is not so understanding at times. Thats very common though it seems. I know its hard for them to understand how we really do feel, its still hard for me to understand at times, so how can I expect someone else to understand.

I don't know how much you have researched 4 level fusions, but they are rarely done for many reasons. A person can become very limited by fusing so many levels, its just not one of those typical surgeries that many drs are willing to do on a patient. In essence by fusing that many discs your back becomes a broom stick with little mobility to speak of. This is not good for a person that is very active because this surgery comes with lots and lots of drawbacks.

I was really shocked to read your said it would take care of your pain. I don't know of any dr willing to stick their neck out and tell a patient that. Most will say it may help decrease the pain some but they don't give much hope in that happening, The surgery is more for correcting the mechanical end of it. So, it may be a blessing in disguise that the ins comp would not authorize this surgery.

Take care.
Posted 11/7/2011 8:45 AM (GMT 0)
Straydog,

Thanks for the information. I'm sorry to confuse anyone about my possible 4-level lumbar fusion. I didn't mean to say it will take care of or get rid of my pain. I know I will be in pain for the rest of my life. I have researched the 4-level lumbar fusion and understand it will limit my mobility. My doctor is very conservative and he has tried ever alternative form of treatment to help decrease my pain and improve my symptoms.
I am hoping the Drug Pump can help me to become active again. There are days where I try to be my old self again...you know, walk an extra mile or push myself to ignore the pain, but I end up on my back in bed regretting it. It's very difficult for me to realize I can no longer do the types of activities I once enjoyed and took for granted. I have been out of work for a year now and that's been a hard pill to swallow both financially and emotionally. I have been working since I was 12-13 years old and I have never been out of work for a fraction of the time I'm currently out of work.v

I will give the Drug Pump (if I qualify) time to see if it helps me increase my activities to the point that I may be able to return to work. I know I can never do the same work I did before my "accident", but I pray I can find a non-physically demanding job. If the pump doesn't help me to achieve this goal then I will proceed with the lumbar fusion.

My doctor proposed I only have a 2-level lumbar fusion to begin with and once I've healed I can return to the table for round two. I know myself and I know what I will have to suffer through even if the operation is divided into two. I also know that I will probably not wish to have the second 2-level fusion, which would defeat the purpose. All four disc are equally bad and causing nerve damage that as time goes on may never be repaired.

My left leg has become weaker and I have started to have pain on my right side. I trust my doctor...I have to have faith in his abilities. He has done a 4-level lumbar fusion on a young lady who has since married and reports she is having little pain and is an active mother as well! Her discs were in the same condition as mine are now. This is something I've discussed with my wife and a decision I have not taken lightly. I have to have faith and believe that the divine plan doesn't have me living in misery. As I've said before, I'm a strong advocate of quality of life over quantity. I am not old nor am I young, but I have lived an active, full life thus far a nd this is just a minor setback or something way worse and I don't want to dwell on that possibility.

Well, its now 3:41am and I have a PM doctor's appt. At 11am and PT at 2pm. I have a case of hiccups that I can't seem to shake and I feel like puking my guts out. I doubt I can sleep now, but at least I will stop typing and spare you from more of my mindless dribble!

I hope that you and everyone else has a pain free and enjoyable week!

Later,

Charles
Posted 11/22/2011 8:42 PM (GMT 0)
Hi Charles, I am not sure if you saw my post on something else you had posted. I just wanted you to know that I have had the L1-S1 fusion anterior and posterior. The only success I got from it was spine stability. My spine used to be so loose that it would pop in an out of place inpinging on all the nerves and causing seriously bad pain. I also wanted you to know that if you had any questions about it, I would be glad to tell you about my experiences. I do think doing the fusions in to separate surgeries is insane, I wouldn't want to go thru that kind of pain twice!!! once was definately enough. I hope your trial goes well and I hope you can get back to work soon. I was injured at 27 and I will be 44 in a couple of weeks, I used to work very hard as a CNA in upwards on 80/week. I had two children who where 3 and 4, unfortunately I was never able to go back to work. I will keep you in my thoughts and hope for a excellent outcome.
take care
Cheryl
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