Pain Pump update

[freebird63]

The pain pump was put in on June 13th, on Monday June 15th I knew something was wrong as I had severe headaches and could not keep anything down.  Called my neurosurgeon and they just refered me to my pain doctor, my pain doctor got me in for a blood patch.  All the while the pain pump has done nothing for the back pain and has created other pains as well.  The pump has been increased a total of 48% and still no pain relief, have been able to get my pain doctor to give me some meds for the pain, but has not even touched the amount of pain I am in.  Also noticed last week I was starting to have the headaches again, not as severe as before, but they will only go away or not hurt as bad if I lay down, this week the headaches are much worse, but still am not throwing up because of them, its just making my life real bad.  Called both my pain doctor and my neurosurgeon and told them what was going on and they really don't seem like they care.  Also a side note, the incision in my back has not healed yet, it has fluid coming from an openning in the incision.  Now we don't know if this is spinal fluid, morphine, puss????
This is kinda scarey as I don't want to end up with spinal meningitus as that would be a bad thing.  I have appointments with both my doctors next week.  The area where the pump is, it hurts to touch it and it sticks out quite a bit.  I am already pretty much 100% that the pump is not going to work for me, both my doctors want me to give it more time, but I have already had to give up so much of my summer to laying around in bed just because I am in so much pain, when the weekends get here I am so wiped out after working all week.  I am usually a very active person and this pump has really put a damper on my summer activities.  I had so much hope that this was going to work for me, the trial pump worked great and was looking forward to this being my ticket away from the pain meds.  I am not looking forward to going under the knife again and would rather have a different neurosurgeon take it out as I have very little faith in the doctor that put it in.  So thats my update in a nutshell.

Chuck

[cam901]

It's great to read the support you guys are giving to Chuck. My day is getting better just reading the compassion, and understanding that we all need to get through each day. Very cool...

[freebird63]

Here is a good one, I don't know if my doctor didn't expect that I would find the report after they did my blood patch, well I checking my reports online and low and behold here was the report from the blood patch prcedure.  In bold letters on this report was this statement" Intrathecal catheter enters at L3-4 and extends superiorly on the right to L1.  There are multiple catheter kinks within the course of the catheter line."  So this explains why I was not getting any pain relief from the pump.  Now both my surgeon and my pain doctor got copies of this report, why didn't either one mention this fact???
So that right there tells me my surgeon messed up and didn't want to admitt it.
Also on a sad note-my employer decided to terminate me today, well actually they sent me home last Wednesday and told me not to come back til they figured out what to do as I have be asking for a less phyisical position.  So they just up and terminated me.  So thats my big update for the day.  My new neuro surgeon meets with me this Thursday to discuss if there are any other options out there for me, we all know that no employer in their right mind would hire a person with a bad back and on heavy duty narcotic pain meds.  So everyone please wish me luck or say a prayer.
Thank you again for being there to listen to me.
Chuck

[freebird63]

The doctor used staples on both incisions this time, the last time hey used sutures.  Well the staples got to bothering me so I took out the ones in the front incision and had my wife take out the ones in the back incision.  Plus I really did not want to go back and see the surgeon who did all this.  I am scheduled for some type of scan on Thursday, I will go in and they will inject some kind of stuff in my lumbar area and then come back in 3 hours and they will do some kind of scan.  Tomorrow  I have to meet with me pain doctor and get my meds for the break through pain figured out.  All they have me on now is 10/325mg percocet 2 times a day and that does not even touch the break through pain.  I also need to have a nice long talk with my pain doctor about many different things that are bothering me, his secretary seems to always be in a bad mood and likes to take it out on me, am not sure how she is with other patients.  But thats what I know for now.  Will keep you all posted .  Chuck

[Tuckamore]

Hi Chuck,

I am so glad that your were successful in having the pump removed. Your determination paid off. Thank you again for keeping us updated. I read with great interest the latest challenges you have encountered through asserting your wishes regarding your body and not the wishes of the surgeon. I think you may be correct that his ego got in the way. I hope you avoid him in the future like the plague.

I have read that surgeons have to have the biggest ego in the medical field because of the often split second decisions they must make, sometimes in rapid succession. I assume none of us would want a timid surgeon with low esteem!!! But I do not mean to make excuses for the way your were treated, there are none.  

So where do you go from here? And how are you feeling? I hope the worse is over for you. I know that none of us like to continue to swallow pills just to function but your recent horrendous journey proves there are worse things.

I'll look forward to your progress reports. Good luck.

Take Care,
Tuck

[freebird63]

Well the pump was taken out this morning.  My surgeon was so opposed to taking it out and he was quite the jerk.  I must have damaged his ego.  He even called me yesterday at work trying to get me to change my mind, when I said no its coming out he just said"fine see you in the morning then" and hung up.  Then when he came in to pre-op he was trying again to talk me out of it and once again I said no it comes out and then he mentioned the cathater and that he normally leaves those in and I told him to take it out and of course he became mister attitude.  But its out now, am not sure if I have developed another CFS leak as some pretty bad headaches have already started, I hope not.  My surgeon did not even give me any post surgical pain meds.  So once again more bad experiences, I keep asking myself when will it end.  
Chuck

[freebird63]

Well I did go to the ER and of course the ER doctor could not find any discharge from the incision, so of course he discounted that, but he could not discount the headaches and all the pain I was having in my back and the area where the pump.  Of course it was 6 o'clock on a Friday afternoon and they paged my neuro doctor, but he would not answer his pages.  That afternoon I got the chance to speak with my wifes neuro surgeon, like I said I work at the local trauma center and seen on the schedule he was doing a case that was scheduled to get over at 8:45am, so I waited around up in the OR til he was done and spoke with him and briefed him on what was going on, of course he also said I needed to go to the ER to get the incision checked out as I didn't need to get menigitus.  He also felt that the pain pump was not working for me.  One thing the ER  doctor did say is that if I had another CFS spinal fluid leak that another blood patch would not work for me.  I still think its rather interesting how chronic pain patients get treated.  I will see my pain doctor on Wednesday and will have a nice long talk with him and them prepare for battle with my neuro surgeon.  Will post more after I see my doctors.  Wish me luck......Chuck

[Tuckamore]

Thanks for providing more information. Your right, especially as an employee of the hospital one surgeon in the same practice or sharing the same hospital will not see you. You would need to go outside the immediate area.

I guess it's possible that your body is reacting or rejecting the pump but I don't think it's probable. They implant pacemakers all the time and I have never heard of someones body rejecting a pacemaker.  

I think your plan is a good one. Have an ER Doc take a look at it. It would make sense that if you are leaking spinal fluid you would have a headache, especially when you stand up.

Some physicians beleive if you are able to work your pain is not so severe, at least that is what I was told by my PCP. She said the reason many physicians did not take my pain seriously is because I was a working, successful professional. Thank goodness she saw through the front I put on to continue my career. So be sure to explain to your physicians that working is all you can do, you are zapped at the end of the day and can do nothing else..

I'll look forward to your next post.

[freebird63]

My wife thinks that maybe another possiblity is my body may be rejecting the pump???  It senses a something strange is in my body and is trying to reject it??  But I know deep down that something is wrong, here in Idaho right now we are having some real hot days and I am going from being freezing one minute to sweating the next minute.  Like I said in my previous post the area around the pump hurts to even touch it.  I know it sounds weird, but no matter what I do I can feel it, I move and I feel it, I laugh and I feel it, just setting here in bed typing and I can feel it and it does hurt.  Also these headaches are constant, the only relief from them is to lay down.  I work in a hospital and pretty much know most all of the surgeons and have already figured out that no other surgeon is going to want to touch me as they will feel they are stepping on the toes of the surgeon who put the pump in.  So much about this is so frustrating, on one hand since June 13th I have been confined to a bed, with the exception of working my 40 hours every week in a very stressful and very phyisically demanding job.  I am normally a very active guy and this laying around just kills me.  I feel as thou I  have been robbed of the last 40 days or what ever the amount has been.  Then the reality is setting in that for the rest of my life I am always going to have to deal with pain and taking pain medication.  So my golden years are not looking so golden.....so to speak.
I figure tomorrow at work I will run down and see if I can corner an ER doctor and see if he will look at my incision and give me his opinion.  Thank you all for listening.
Chuck

[Tuckamore]

Hi Chuck,

It's good to hear from you and thank you so very much for the update. I have been wondering how you are doing. I am certainly sad and upset to hear that the pain pump had not been what you had hoped it would be and indeed has caused you more problems than benefit.

I agree with Sandee. You need to go to ER or Urgent Care (though I think this is beyond their scope of practice) and have a medical professional look at the incision site. Please don't wait. I can tell you are distressed with the run around it appears you are getting from your physicians. Frankly I would feel that way also.

And don't be afraid to see another surgeon. Sometimes they won't touch someone else's work but it is worth a try....and I suggest you do that asap. If you have lost confidence in your surgeon it's time to move on. Tell the nurse (not the receptionist) that this is an urgent situation and you need to see a surgeon. Get past that gatekeeper if possible. But my guess is they will tell you to see the surgeon that did the procedure.

My PCP, who in Wisconsin is also my PMP, and I have discussed the possibility of a pain pump implant. But as I said on an earlier post my body operates under Murphy's Law, what ever can go wrong, will go wrong. So under her advice and with my agreement I have avoided that option. I admire your courage and determination.

I hope this will soon be resolved and that your pain will be better controlled. Please continue to keep us updated. I will watch with interest for your next post. We will be thinking of you and remember that we are here to support you. Good luck!

Take Care,
Tuck

[sandee1818]

I am sorry the pump is not working as well as we had hoped. I would definitely have the incision site checked out because you could have an infection. Go to the ER if your doctors will not see you before next week to make certain you do not have an infection.
I do hope it will end up working out.