Trial pain pump this Thursday

This Thursday I am going in for my trial pain pump and yes I am nervous.  It doesn't sound like that bad of a procedure, but the one thing that has bothered me is both my pain doctor and the neuro surgeon that will do the permanent pump have not even seen my MRI's.  At their offices they cannot seem to pull them up.  My pain management doctor has not really given me any advice on what to expect  yet???  I will see him the day before.
This could not come soon enough as it seems my pain has been getting worse.  I made the mistake of working for a little bit on my boat yesterday and that was a big mistake and I am paying for it dearly as my pain medication will not even touch the pain I am in and I know it does no good to go to my local ER as thats a joke.  I have called my pain doctors office and let them know its not working and I always get the same response, we will tell Dr ****** that its not working.  I have really come to understand why people with chronic pain are always so frustrated, its because the doctors generally will not listen to you and they think your just out to get the pain pills.  But if anyone has any advice for me as to what to expect with the trial pump it would be greatly apprciated.

Thank you

Chuck

[Tuckamore]

Hi Chuck,

It good to hear from you again. Thanks for updating us on your progress. I would be a bit nervous too. It is perfectly normal. I'm sorry that I cannot help you as I do not have personal experience with the Pain Pump. There are other members that may be able to give you some information.

Yes we are often frustrated with the way we are treated. I am lucky that my PCP is compassionate but I too have days that nothing touches my pain. I'd like to say that I grin and bear it but it's more like I moan and bear it.

Please let us know how your procedure goes and how effective the pump is for you. We all learn from one another. I'll be thinking of you and wishing you the best.
Peace, Tuck

[freebird63]

My wife met with her neuro surgeon today, yes she has to have back surgery too,  her neuro surgeon has pretty much did back surgery on everyone in her family.  Anyways I talked to him briefly about my back problems, I ask him if this pain pump did not work if he would consider taking me on as a patient, well he said my back problems were rather complicated and he is not sure he could do anything to fix it.  He said my sacrum & tail bone have such a radical curve to it that it would be almost impossible to fix.  I understand that, I mean its not like you can just take it out and straighten it.  It seems like in the last year my back pain has been getting much worse, so I figure at this rate if the pain pump doesn't work, then I will have to rely on oral pain medication and figure at this rate within the next year I will be completely disabled.  Boy I guess when they made me they must have used spare parts.....my little bit of humor.  I guess growing old is really hell for some.  But for me its still hard to swallow as I am use to being a very active person.  Never have I had to give thought to how badly I was going to hurt after mowing my yard or going out fishing in my boat.  So Thursday morning can't come quick enough.  I want to thank everyone for listening to my rants and all the words of encouragement.

Chuck

[nurseaudrea]

Do you know how they will be doing the trial? Is it the kind where you go home with it for a few days, or is it a 24 hour trial? The reason I ask is because I have done the trial and it was only for 24 hours. They made me stay in bed the whole time in the hospital. I could not get up to see if it really helped my pain. Of course it seemed to help, but laying down has always helped my pain. In my opinion, if you are made to lay in bed in the hospital the whole time while you do the trial, you really will not know if it works well enough in your daily life to warrant getting the pump. If you really want to know if it will work for you then you need to stop taking your meds and do the trial for a period of at least a few days, if not for a week. That will tell you if it will be successful in your normal daily life with everything you do on an everyday basis. Some doctors do that way and some only do the 24 hour trial. I could not go through with it because it is the last option for me and I want to know that it will really work before I let them put a pump in.

Good luck to you. I hope it is successful and you find much relief.
Audrea

[freebird63]

From what I know and thats not much, hope to find out tomorrow at my pre-op appointment, I will have the trial pump for 1 week and will go home the same day.
I don't know about the pain meds yet, they have me on 30mg oxycontin 2x a day and 10/325mg norco 6x a day and 5mg valium 2x or as needed per day.  But like I say I hope to know more after tomorrows appointment.  But for me this is the only option available, if this does not work then I am pretty much SOL because my sacrum & tail bone have an extreme radical curve to it, as my wife's neuro surgeon say's, I am a very verticle person.  Setting down kills me and lately anything active kills me.  I will keep everyone posted as to my progress.

[nurseaudrea]

I am glad to hear you are doing it for a week. Sometimes, though, I have heard of people getting the pump, and they still need to take bt meds for pain. I have heard many success stories with it. I hope it works out great for you. Let us know how you are doing.

Best wishes, Audrea

[freebird63]

Well am laying in my hospital bed for the night for observation purposes, will go home in the morning, took my pain meds this morning and have not taken the duladid they have offered me, don't need it as I feel no pain, so far the experience is great.  I did get a little sick right after the procedure, my doctor increased my morphine dosage in the pump.  I have been up and getting around fine since 8pm my time.  Ate a good meal, well it was hospital food.  The procedure was not as bad as I thought it was going to be.  The most critical part is not getting an infection, if I get an infection they cannot put the permanent pump in for 6 months until the infection clears.  Will post more as the days go by.  Thanks for all you support.

Chuck

[Tuckamore]

Chuck,

I'm glad to hear that so far so good. Thanks for the update. It sounds promising.

I have severe and chronic SI Joint Dysfunction, close to the coccyx. I can relate. They can do nothing for it. You learn to deal with the limitations and swallowing the meds that help you function. I am optimistic that you will do fine.

And of course I will look forward to your next post.

Tuck

[freebird63]

Well I wore the trial pump for a week, only having to had take my duladid for some break through pain 2 times.  So for me the pump is going to work.  It sure was nice to be able to work all week long, in the last month I have been missing one to two days a week because my pain meds were not taking care of the pain.  I have had to go back on all my meds since the pump was removed, but still am not in quite as much pain as I was before the pump.  So I am still considering this to be a 100% success.  Now I am just waiting on my neuro surgeon to call me to discuss the permanent one.  I am keeping a positive attitude towards all this as I don't want to even think that maybe the insurance company will not pay for a permanent pump, then life would not be so good for me.  But will keep everyone posted as to whats going on.  Thank you for all your support.

Chuck

[nick30]

Wow, that's an awesome result. I have considered the pump as an alternative to pills and patches. it will have another think about it. thanks for the update Chuck.

Nick.

[nurseaudrea]

I am so glad the pump worked for you. Sounds like a huge success. I don't see why they would let you go through a trial and not approve it after it has shown to be effective. I am sure you will be fine. You just have to do okay until you can get the pump. Hopefully that won't take too long.
Good luck.                                   Audrea

[freebird63]

Ya I hope my neuro doc does not take too long as my wife has to have back surgery on June 1st.  If he can do it before then thats great but otherwise I have to wait until my wife can get around and that probably won't be until July or August.  The one thing that was no fun was stopping the pain meds cold turkey, there were several nights of no sleep.  I think when they do the permanent pump I will ask for a few sleeping pills or check out the over the counter ones.  Ya I can't say enough about the pain pump.  My sister inlaw has  the never stimulator and she loves it.  But will keep everyone up to date on my progress.  Thanks again for all the words of encouragement.

Chuck

[freebird63]

Well June 13th is the day for my permanent pain pump.  It seemed like it took forever for my pain doctor to send over his report to the neuro doctor and their offices are only 100' apart.  But anyways its going to happen finally.  What a long road this has been and the worst part about it has been my employer/manager.  From the day they took out the trial pump he was actually bugging me to call my doctors several times a day and bug them to get going with this.  Finally I got called into his office and he was giving me the 3rd degree and I just said "hey I will give you my doctors phone numbers and you can call them, maybe you can get better results", but I told him I would not bug my doctors because there are only a couple doctors in my area that do the pain pump and I didn't want to make them mad enough to not see me.  The funny part about this all is my employer is a hospital and hospitals are suppose to care so much about people..."ya right".  But as soon as I get this permanent pump put in and get off the oral pain meds I will be in the market for a new job.  So anyways June 13th is the big day and as per usual I will post how things went.  It will be an in and out surgery, should take about 2 hours and then probably 2 to 3 hours of recovery time and then I go home.  
Thank you all for all the support you have given me, its been a long road and to know that there is finally a light at the end of the tunnel is awesome.

Chuck

[odannyt]

I have had a pain pump implant for more than 6 years. It has worked miracles for me. I also did the test pump for a week and begged my doctor for just one more week. I wore my test pump for 2 weeks and hated to see it go. They dragged their feet on the implant. After about 3 months Ihad a bad fall which increased my pain. I lost control of my bladder and bowels & my primary care doctor had me admitted to the hospitial. He promised me I would not be discharged until I had the implant. I have had my pump since.

[freebird63]

Well last Saturday they put the permanent pump in, the surgery went great, its when I got home things started to not go so well.  I was leaking spinal fluid and getting extreme headaches and therefore that was making me throw up.  Finally on Monday I called my neuro doctor, they kinda brushed it off and prescribed something for nausea, they also told me to call my pain doctor and let them know what was going on.  They wanted to see me right a way, boy what a drive that was with a ragging headache, they scheduled me for a blood patch the next day, yesterday.  I did as told and laid in bed for 24 hours and it seems to have helped, they had to do a large volume blood patch.  Tomorrow I will go in to see my pain doctor and have him adjust the pump as I am still having bouts of pain in my lower back and will start the procedure of getting off all the pain meds and I can't wait.

[Tuckamore]

Thank you for the update. I hope things will go better for you. Please take care and when you can let us know how you are progressing.

Feel Better,
Tuck

[freebird63]

I got the blood patch on Tuesday, the doctor that did the procedure put a high volume blood patch in, what that means is-according to doctor- they usually only use 12 cc's of blood, but in my case they used 17cc's of blood.  It has taken the headaches away.  My employer is really getting to be a pain in my butt and my pain doctors butt.  But according to my pain doctor, he faxed a note to my employer saying I could be off up to two weeks.  Now I can't afford to take any more time off, so I am going to go back to work this coming Monday.  My pain doctor did caution me to be very careful when I lift anything heavy as to not blow that patch.  Now that makes me nervous as my job is fairly phyisical and do not want to go through those headaches again.  As far as the pain meds, my pain doctor once again had me go cold turkey and just like with the temp pump that has interrupted my sleep badly, but oh well I will get through this one too.  So thats my Friday's update....TGIF.  Hope everyone has a great weekend and happy fathers day to all dads out there.