Medtronic Pain Pump and Chronic Pain

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IndianaBoy
Regular Member


Date Joined May 2016
Total Posts : 45
   Posted 5/7/2016 11:33 AM (GMT -7)   
Hi all! I am looking for some help and guidance about a issue that I have been struggle with for the last several months. I had a Medtronic Pain Pump for over 2 years now and for the last year and a half (1 1/2 year) it did a really great job treating my lower chronic spinal pain. The medication in the pump consisted of both Morphine and Bupivacaine. This mixture worked Great! But 6 months ago my doctor changed the mixture by adding Clonidine to the mix (Morphine, Bupivacaine, and Clonidine), which for some reason stopped working - managing my lower chronic spinal pain.

To add to the problem, the doctor moved from morphine to hydro-morphone, and now to fentenyal (Fentenyal & Bupivacaine) which has not done anything in the way of helping reduce my spinal pain. I took a genetic-test which said that Fentenyal would be the correct drug to use for me. I have had a couple MRIs one with contrast and they didn't show any leaks, but each time a new medicine is tried, the pump area becomes numb for a day or two and on the last pump adjustment, the skin around the pump was very firm - bloated (which lasted for a day or two).
Has anyone dealt with a problem similar to mine? I don't understand why the addition of Clonidine has stopped my pump from managing my lower chronic spinal pain. Or is their a leak in the tubing that the MRI with dye didn't show. I would like for someone who has experienced what I have, please shed some light on what happened and what can be done to fix the problem.

There was no problem till a drug called Clonidine was mixed with my Morphine and Bupivacaine. One other concern is that the nurse that fills my pump every 3 months told me that she accidently missed my fill-port around the same time that the Clonidine was introduced. But yet a MRI with dye was done to check for any leaks. Yet, not sure what to do at this point. I'm dealing with the pain as best as I can. I would truly appreciate any help/suggestions that anyone could give me on what can be done to resolve my pain pump issues.

I'm on OxyContin 80 mg along with 30 mg of oxycodone for break through pain. These 2 medicine are not doing much in the way of controlling my pain.

Thank You cry cry cry

straydog
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Date Joined Feb 2003
Total Posts : 15334
   Posted 5/7/2016 7:41 PM (GMT -7)   
Hi IndianaBoy & welcome to Healing Well. I know you mentioned having the test & it showed Fentanyl being the best suited for you. What I still don't understand is if Morphine was working well why on earth would a dr mess with that & rock the boat. That makes absolutely no sense, test or no test. Yes, Fentanyl is an extremely strong opioid & I can't understand why you are not getting relief. What dosage of Fentanyl is being used in your pump? Makes me wonder if the dr dose not have your dosage right in the pump. Most drs are super conservative when it comes to the meds used in pumps. Do you know the dosage of Morphine that was being used? Dilaudid is used as a last resort because the cost factor, its super expensive & most insurance companies get their hackles up when used in pumps.They would much rather the drs try something different. No, I do not think the Clonidine is the source of your problem either. They use such a very small amount in pumps its for blood pressure which may sound strange but thats why a small amount is put in pumps. I have had it in my pumps since I got my first one in 2005. I have had every drug & then some you have listed in my pumps. The Bupi in your pump should also be a super low dose, its a numbing effect this is why only a low dose should be used. The purpose of it is to help the meds to stick to pain receptors.

When they change meds out on refills the medication they take out is measured & recorded at each refill. If they see there is too much or too little left that is an indication there is a problem. So it doesn't sound like there is a catheter problem.

When you have a pump refill are they done under xray or how? There has been times they have missed the little port area on me but they are always able to jiggle the needle around & hit the little port area.

My thinking is the medication dosage is the problem. Like I said the drs are super conservative with the dosages. Take care.
Susie

IndianaBoy
Regular Member


Date Joined May 2016
Total Posts : 45
   Posted 5/8/2016 6:23 AM (GMT -7)   
Susie,
I'm new to this forum, I would like to add additional information to my post, but I'm unsure if the Quick Reply is the way to do it.
Please tell me if this is the correct way to proceed.

thank you

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 15334
   Posted 5/8/2016 9:25 AM (GMT -7)   
Yes that is how you can post on this same thread.
Susie

IndianaBoy
Regular Member


Date Joined May 2016
Total Posts : 45
   Posted 5/8/2016 4:41 PM (GMT -7)   
For 1 ½ years, I had the following medication in my pain pump: PF Morphine 10 mg/ml, and PF Bupivacaine 10 mg/ml in 41 ml of PF NS which worked Great!
Then the DR. wanted to treat another issue with the pump by adding Clonidine 100mg/ml – in 41 ml of PF NS to the original mixture mentioned above. Then to add another twist to this, the nurse missed the fill port and the needle went somewhere else. No, the nurse does not use anything but her finger to find/feel the fill-port. Shortly after the fill I noticed that my spinal pain was not being managed as well as before. It slowly started to get worse. The DR. then turned up the pump and the pain then went away, only for a few days and then the pain came back as before.
The DR. then changed out the medicine to the following: To the original mixture/dose for both the Morphine and Bupivacine. I had no pain relief as before. Then the mixture was again changed out to both Hydro-Morphone and the Bupivacine – and still no pain relief!
Just within the last 2 weeks the medicine was now changed out to the following: PF Fentanyl 1,000 mcg/ml and PF Bupivacaine 10mg/ml in 41 ml of PF NS. I had NO relief so the DR. changed the pump setting from 400 microns to 500 microns. Still No relief
I did notice during the last medicine change-out that my skin around the pump was somewhat numb and when the pump was turned up from 400 to 500 microns there was a little swelling around the pump area or sack holding the pump (the skin seemed stretched or tight around the pump area), which later shrank down the next or so.
I had a couple of MRIs (one with contrast), but it showed no leaks, so I’m at a loss about what is going on. I was told by a Medtronic Rep that a leak is possible in the catheter even is the dye study shows no leak. My DR. mentioned that if he goes in and finds no leak, then I have to decide if the pump gets removed or it stays in. Has anyone had a problem similar to mine and what did they do?
When the Clonidine was added to my pump, that is when everything seemed to go downhill for me and now they can’t seem to get me back to my pain free status as before. I am currently on both oral 80 mg of Oxycontin along with the 30 mg of Oxycodone (used for break through pain) which isn’t helping my chronic spinal pain very much. If the pump gets removed, then what?

PS it was mentioned that the medicine is both measured going into the pump and when removing it from the pump. Even thought the numbers match could a catheter problem still exist – fluid is still moving, either leaking out of the catheter or traveling to my spinal sack.

One other question: Susie, you said that you too had Clonidine in your pump. I take it, there was no issues for you with the Clonidine? My thought was that the Clonidine might have crystallized the tip of the catheter, not giving me enough of the medicine, but I wasn’t sure about that. I just don’t understand what happened after everything was working Great until the Clonidine was added.

Any help would be Greatly Appreciated! I'm not sure what to do at this point. Can someone please provide me with some answers.

thank you

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 15334
   Posted 5/8/2016 11:50 PM (GMT -7)   
I have had two different types of pumps, a Medtronics & currently a Codman. Two completely different types of pumps. If you had a mass at the tip of the catheter there would be a difference in whats left in the pump at the time of refill. Meaning you would have a good deal of meds left in it at refill time. Thats not what I am reading here. Have you had any falls or anything like that? Its possible to get a crack in the catheter, they are pretty small.

I still have Clonidine in my pump which is common for pump patients, same with adding some Bupi. Speaking of the Bupi, the dosage should not be over 7mg, as it can cause problems, like losing the feeling in a leg or foot. It was often used with women delivering babies.

The nurse should have known she missed the port & should not have pushed the medication, she knew she missed it. Like I said when they miss it, all the have to do is manipulate the needle & can get it where its suppose to be & it doesn't hurt. My prior PM drs nurse was a pro at hitting the port, she would use what looked like a cd over the pump & mark a dot. Then she would feel the area with her fingers & nail it. In 4 years she missed twice but again was able to manipulate the needle & get the needle in. My current PM dr uses xray & he missed it once because my pump is tilted.

If this were me I would insist the pump & catheter be removed & new put in. You have some really strange things going on & your dr needs to find out what is causing them. Do you know how much you get in a 24 hour period with your pump?
Susie

IndianaBoy
Regular Member


Date Joined May 2016
Total Posts : 45
   Posted 5/9/2016 6:03 AM (GMT -7)   
Susie,
If you don't mind me asking, you stated that you have had 2 different pain pumps, was the Medtronic Pump not working?

During the first 1 1/2 yrs I had the pump it worked Great, the only thing I had to do at certain times of the day (if I over worked myself working in the yard etc.) I would have to use a heating pad on my lower part of my back for a few hours at a time till my pain wound go away. Sometimes I would use the heating pad for several days till the pain went away. But, after that the pain would be gone and the pump managed the pain very well.
What I don't understand is when the Clonidine was added to my normal pump medicine, it all went BAD! I don't understand what happen.
1. Could there be a leak in the catheter?
2. Could there be a leak in the pump?
3. Did the Clonidine do something to my spinal sack - where the medicine going into?
4. Did the nurse do something at the time of refill where the medicine is now not going into my spine?

What I do know now is that I can't use a heating pad on my lower back because it causes more pain. Is that because no medicine is getting to my spinel area?

Several months ago my DR tried to draw out my medicine- he told me that during that process - there was a HARD DRAW while removing the medicine, but he said that when pushing in the dye into the pump cavity he pushed the dye through to open up whatever was causing the HARD DRAW. The DR told me that the dye went in fine after that. After this procedure, this is when the Medtronic Rep told us that there are times when the catheter leaks and it wont show up with the use of dye.





How common is it to change out the pain pump and catheter?

If my DR won't do it what other medical institutions (that specialize in chronic spinal pain) would be interested in taking on my case?

My DR is NOT very interested in resolving the problem!
That is why I am asking to be pointed into the right direction where I can find a DR that wants to help me. I don't have to tell you how bad chronic lower spinal pain hurts.

Due to the DR schedule, I will have the answer for you on how much medicine I'm getting in a 24 hr period with my pump.

Thank you for replying to my post.
I truly appreciate you help!

Thank You

White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3674
   Posted 5/9/2016 8:32 AM (GMT -7)   
Hi IndianaBoy There are allot of things that could be causing your problems, may I ask is your doctor a specialist in this form of pain control? Did you get a PTM ( Patient Therapy Management) unit with your pump? It is a small device that is about the size of a small flip cell phone. It is preprogrammed by your doctor, and it lets you give yourself bolus doses from the pump to control break through pain. This is part of the Medtronics Pain Pump package,

I got my pain pump installed in June of 2014 and it has worked great for me. It give me a constant infusion of morphine into my lower spine. And I also have a PTM which is preprogrammed by my doctor to let me give myself up to ten bolus doses in a 24 hour period, but it is limited to only one bolus dose every two hours. Anyway I got mine implanted at the University of Indiana in Indianapolis, and have had very good results! For me I go up to Indy every six months or so, to have it refilled. So far it has really been a Godsend for me!

My suggestion is to maybe try and see someone else that specializes in pain pumps and see what they might be able to do to help you?

Please keep us posted on your progress, Good Luck to you! Oh and Welcome to the Forum!

White Beard
Moderator Chronic Pain
USAF retired in Sept.1991. I went back to school and became a licensed RN in 1994, I worked on Oncology and Med Surg, Disabled in late 1999, was approved SSD in early 2002! Diagnosed with: DDD and Multiple herniated Disks; Foraminotomy L3/4/5 Jan 2013; Posterior Articular Joint fusion Nov 2010; C5/6 ACDF Sep 2009; C6/7 ACDF 1985; Implanted pain Pump Jun 2014.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 15334
   Posted 5/9/2016 9:19 AM (GMT -7)   
My first pump was a Medtronics & of course after time the battery died & it was time for a new pump. Being under the care of a different PM dr, for whatever reason she would not use Medtronics pumps in her patients. She insisted on Codmans to be the replacement pumps. They are outdated & a manual pump that no PM dr wants any part of. The Medtronics pumps are more up to date. Here is an example of a Codman, if I need an increase they have to drain the pump & start over with new meds, very much outdated. This Codman is a larger unit & has migrated. I am waiting to have it removed & a new one put in as I have a mass on the tip of the catheter. It has clogged up the catheter & very little medication is getting through. The reason it did this is I was on a very high dose in my pump & thats a risk. My current PM dr was horrified when he saw what the dosage is in my pump. My dr retired & referred me to him.

If your dr is not willing to help you resolve these issues look for another dr. Go to www.Medtronics.com & look on their website to see if there is a dr in your area. I know they use to have a list of drs on there. You can also call Medtronics & ask for names of drs in your area. You could very well have a small crack in the catheter & be losing your medication through it. If the pump itself was failing that would show up on the computer check.

I do not think it was the Clonidine injection that caused your issues. The medication would have just been absorbed by surrounding tissue.

Keep us posted.
Susie

IndianaBoy
Regular Member


Date Joined May 2016
Total Posts : 45
   Posted 5/9/2016 12:38 PM (GMT -7)   
I have a couple of more questions and I will let you go.

I have a question for White Beard: So you went to the IU Medical Center in Indy? How can I get involved with that group? Is there a specific person that you can suggest? How did you contact them?

My situation is a little unique in that my current Pain Management DR is somewhat managing my pain with 80 mg of OxyContin and 30 mg of Oxycodone for break through pain. This current medication is NOT doing a very good job but its all he will do for me. Note: I don't like taking oral medication, but how else can I control my pain till he does something with my pump. If I change DR to IU will they manage my pain till they get my pump back to working as before? The PM DR that I have just does not seem to want to solve my problem with the pain pump.

As for a Bolus, yes I do have one but the PM DR disconnected it sometime ago because of the changes in medicine in the pump according to him. So, I have no Bolus currently.

When I first was being considered for a pain pump back in 2014 - my PM DR injected the morphine directly into my spinal sack to see if it would control my pain (and if I would be a good candidate for the pump) - and it did a Great Job!

What I don't understand is why can't my DR. do another injection directly into my spinal sack to see if the medicine still works to control my pain. He is switching meds in the pump but we don't know if the pump is leaking or if the medicine is reaching my spinal sack. What are your thoughts?


Susie, if you don't believe that it was the Clonidine injection that caused my current issues with the pump not controlling my spinal pain, then there has to be something wrong with the pump and catheter as you mention earlier. So before the PM DR removes my pump and catheter altogether, would I ask for him to inject the medicine directly into my spinal sack as before or ask him to just replace everything or if he does nothing for me look elsewhere for another Dr. I would like to get some relief soon. My PM DR has mentioned that he would prefer to just remove the pump all together and not have the pump anymore.

Your thoughts would be greatly appreciated!

Thank You

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 15334
   Posted 5/9/2016 12:52 PM (GMT -7)   
If I read you right the dr wants to do away with your pump completely & not replace it all. When there is a problem such as yours the usual protocol is to replace everything, not parts of it. Again, personally if this were me, I would find a new dr. You have said it yourself he doesn't want to help you so what is the point of staying with him. I don't believe this injection again is the way to handle things you have already had success before. Your problems are of a mechanical nature not physical.

What state are you in? If you are close to Indy that may be a possibility. Other than this PM dr are you under the care of any other specialist? What about a good PCP? Either of these could make the referral to Indy.

If you will click on the White Beards name it will take you to his profile where you will find his email address. You can send him an email about the questions you have about his dr. Be sure to put in the heading of your email that you are from HW with a pump questions.

Keep asking questions this is how we learn. Also, you can do a google search for pump drs in your state to get an idea whats out there. I just went on Medtronics web site & they have a place to put in your zip code & it will give you a list of pump drs in your area.
Susie

Post Edited (straydog) : 5/9/2016 3:20:41 PM (GMT-6)


IndianaBoy
Regular Member


Date Joined May 2016
Total Posts : 45
   Posted 5/10/2016 6:44 AM (GMT -7)   
Susie,

I don't know much about pain medication for pumps, but you are saying that injecting the Morphine or Fentenyal & Bupivacaine in my spinal sack really won't prove anything because this test was done in the beginning to verify that I would be a good candidate for a pain pump and if it was performed again the results would still be the same - that the pain pump would be the best way to go to handle my pain.

The only reason that I suggested that this test be done again, is to see if the Clonidine damaged or changed something in my spinal area where it won't accept any pain medication to manage my pain. I know this sounds strange, but I just don't know much about pain medication for pumps. I don't know if it had some strange effect on my nervous system.

I'm glad to hear that you are suggesting it could be more of a pump and catheter issue. That still gives me hope that I can get back to my pain free status as before. I guess I just don't understand how the pump and or catheter can fail. I have always tried to be careful physically, not to damage my catheter etc... The only thing that I do out of the norm is use a heating pain on my lower back area to help with the pain level if it get to be more uncomfortable than normal because of physically over doing it.

Thank you,

I truly appreciate all your help with my questions

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 15334
   Posted 5/10/2016 8:11 AM (GMT -7)   
Um, I was told no heat to the back or stomach areas once I got a pump. One dr actually banned me from our jacuzzi. Stupid me listened to him. I never got the tub over 98.7 because of blood pressure problems. My next dr allowed it as long as I kept the tub at 98.7. I am seriously thinking you may have a crack in the catheter that happens. A catheter can come from the mfg with a crack & no one know it until the patient gets no relief.

Where is your pump located in your stomach area? Clonidine is an old medication. It is used off label in patch form to help with withdrawals from narcotics. When the nurse injected the Clonidine & missed the little port that is located on the top of the pump is was absorbed by the surrounding tissue where the pump is located. So there is no way the medicine could get into the spinal column.

I would find myself a new dr that is willing to replace everything!!!!!
Susie

Post Edited (straydog) : 5/10/2016 11:19:04 AM (GMT-6)


IndianaBoy
Regular Member


Date Joined May 2016
Total Posts : 45
   Posted 5/10/2016 12:56 PM (GMT -7)   
Yes, my pump is located on the left side of my stomach. When I use a heating pad, I usually lean back against it or sometimes I lay in it when sleeping on my back. I was not sure if it somehow damage the catheter.

I was never told anything about not using heat by my PM DR.

I also sent an email to White Beard and asked him about the IU Medical Center in Indy etc..

Thanks for your responses regarding my questions

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 15334
   Posted 5/10/2016 5:32 PM (GMT -7)   
You should have been given a booklet by your PM dr that came in the box with all of your equipment telling you the do's & don'ts. With your pump being in the front there really is no way the Clonidine could have come in contact with the spinal column. So, you can take Clonidine out of the picture. I am not the betting type but I am betting you have a small crack in the catheter & thats why you are not getting any relief.

You really need to go Medtronics website & read about pumps so that you are better informed.

As for WhiteBeard I cannot answer for him on his whereabouts. Do you live close to that facility?

Take care.
Susie

IndianaBoy
Regular Member


Date Joined May 2016
Total Posts : 45
   Posted 5/13/2016 5:04 AM (GMT -7)   
Hello Susie,

I'm sorry to ask this again, but I want to make sure that I understand this. Is Medtronic saying that I should NOT be using a heating pad on my lower back (spine area) once I have both a pain pump and catheter installed? As I mentioned earlier, I would usually lay-down on one if my back pain was a little to excessive and my pain medicine needed a little help with the use of heat.

Did you mention in one of your earlier response to me that you found some information on Medtronic's website that they said something about heat and/or leaks in the catheter? If so, could you please send me a link to that. I have been looking on Medtronic's website with no luck. I don't remember receiving a book from Medtronic or my PM DR about my pain pump do's or don'ts etc...

As for the Clonidine, it was added to my pain pump medicine, so my pump consisted of all 3: Morphine, Bupivacaine, and Clonidine and that is why I thought the Clonidine had something to do with stopping my pump from managing my pain. I was thinking that if the Clonidine somehow changed something medically or chemically with my spinal sack where it would not accept the benefits of the medicine. This is why I was thinking that performing another pain medicine test (by injecting the Fentanyl) in my spinal sack, would rule out the thought that I had. I don't know much about medicines and how they act. I do appreciate your time with explaining to me how this works.

I'm sorry to keep asking these questions, but it helps me understand what's going on.

IndianaBoy
Regular Member


Date Joined May 2016
Total Posts : 45
   Posted 5/13/2016 6:43 AM (GMT -7)   
Susie,

On the last paragraph of my last reply to you, I was not sure if my questions were very clear, so I rewrote in again here. Please read the following below: Thanks

The Clonidine was added to my pain pump along with the Morphine, and Bupivacaine. This is why I thought that it might have changed something chemically in my spinal sack where any pain medicine now would NO longer work (possibly crystalizing in my sack or something). I know that this sounds strange but like I said, I don't know much about how medicine works. You mentioned that it could be the Catheter that could be causing my pain problem. What makes you say that? I can't find anything on the Medtronic website.
I will keep researching the site

Thank You

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 15334
   Posted 5/14/2016 8:52 PM (GMT -7)   
As I said earlier, Clonidine is a very common medication used in pumps along with the narcotics this is why I said no to the Clonidine. Think about it, if that were a potential side effect of Clonidine thousands upon thousands of people would be put at high risk. Granted only certain medications can be used in pumps. As far as the catheter goes & you suddenly not getting pain relief, this is why I think there is a crack in your catheter. Your pump is checked at refills so any potential problem with the pump would be caught then.

Did you see the place on their web site where you put in your zip code & it will give you the names of pump drs in your area?
Susie

IndianaBoy
Regular Member


Date Joined May 2016
Total Posts : 45
   Posted 5/15/2016 10:04 AM (GMT -7)   
Susie,

Yes, I found it and have been putting it to use. I found 2 DRs on this site. One is in Northern Indiana (a private practice) and the other is at the IU Medical Center Indy. You suggested to change out both the pump and catheter - what do you base changing out the pump on? Personal experience, common sense or something that Medtronic has stated or what? I think it makes sense but I was wondering the reasoning behind it.

My current PM DR wants to open me up and look at the catheter for any leaks. I have a meeting with him soon to discuss it and my suggestion will be to change out both pump and catheter. If he says no, than I will suggest a second opinion for either IU or some other local PM DR. I want to get things going because I have been suffering with this horrible pain for 8 months now. I want some relief. I think that I will call IU tomorrow and ask questions about my issue to see what they tell me - before my meeting with my current PM DR.

Not only am I not able to sleep because of my pain level, but thinking about what to do next and if asking that both the pump and catheter be changed out is very stressful for me. Not sure how many DR will turn me down. I will take both Medtronic and IU Indy's recommendation. This is why I'm asking what do you base your suggestions on? I hope you understand my dilemma. I just want my pump fixed and working as before. I will ask about using heat on my lower back and could that have caused any damage to my catheter. I hope that IU can answer some of my questions.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 15334
   Posted 5/16/2016 12:00 AM (GMT -7)   
I just don't think your drs plan of taking a look is the the correct thing to do. These catheters are so small & trying to find even a small crack in one of them would be like looking for a needle in a haystack, just my opinion. Sure once a catheter is removed

Most drs when there is an issue such as yours change everything out not just say removing a catheter or a pump only. Mainly boils down to what the drs recommendation will be. Its easier to start fresh with new equipment than not.

I doubt the heating pad caused any catheter issues unless you got it incredibly hot, the booklet says to avoid heat with them. Its a shame the dr didn't give you the booklet. I would call the drs at Indy & see if you can get an appt there for starters. Take care.
Susie

IndianaBoy
Regular Member


Date Joined May 2016
Total Posts : 45
   Posted 5/16/2016 1:07 PM (GMT -7)   
Oh, by the way Susie,

I also wanted to add the I went to my family DR and asked the question about what to do. She suggested to have my current PM DR go ahead and open me up and look at the catheter for leaks and only after he found nothing (or no leaks) then I should have him close me up and then look to IU. I'm not so sure that that's the right way to proceed. My thought is (as mentioned earlier) to go to IU only if my PM Dr refuses to not change both my pump and catheter at my request. My family DR said that I'm over saturated with opioids and possiblly need the help of IU to clean me out and start over if pain meds are my only option. I really hope that someone can get my pain pump working as before. I really want my pump back.

I called IU this morning and ask about trying to get a second opinion from Dr. Wellington. But I was told that I need a referral from my current PM DR and then to have that faxed down to Indy and called 4 business day later to check if they have review my information and determine if I will be accepted by them for either a second opinion or as a patient. The earliest appointment available is at the end of August. That is a long time to wait! That is also depending on if they accept me for either a second opinion or as a patient. I emailed white beard to let him know what I was told by his doctor's office. Anyway, I plan on meeting with my current PM DR this Thursday and see what he is thinking, I will request that both my pump and catheter be replaced. If he refuses that suggestion, then I will ask to send a referral to IU (Wellington's office) and wait. Not sure what else to do at this point. The reason I want IU is because I think if anyone can find my problem and fix me it you be them and if my family DR is correct that I'm opioid saturated then they can help me with that too.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 15334
   Posted 5/17/2016 10:12 AM (GMT -7)   
Indiana, did your PM dr implant your pump? Not many PM can do surgery on their patients. My current PM dr use to implant his own pumps but his practice got so busy he just did not have the time. Now he refers everyone to a neurosurgeon.

What about the meds for his pump patients, does your dr mix his own compounds or does he use a pharmacy? How long has this dr been handling pump patients?

I am not surprised that Indy wanted a referral. That stinks it takes so long to get your foot in the door. Most PM drs want a referral from another dr. The last 2 PM drs I have had all requested a copy of medical records for the prior year for the dr to review before I could even get an appt.

Your primary care dr sort of sounds like she does not think you need to be on any medication for your pain. Was she hinting at you going to Indy for a rehab stint to get you off of your medications? I am asking because of her comment that you are probably saturated with medication.
Susie

IndianaBoy
Regular Member


Date Joined May 2016
Total Posts : 45
   Posted 5/17/2016 12:02 PM (GMT -7)   
Susie,

Yes, my PM Dr did implant my pump. No, he does not mix the medicine that goes into my pump - a pharmacy provides the medicine. This pharmacy company does a lot of pump patients. Not sure how long my PM DR has been doing pumps, but I guess its has been maybe around 5 years or less I think.

I was shocked when I was told that I will need to send a referral to IU Pain Management Group to even be considered to be seen by their PM DRs there. Then if I am accepted as a patient, it will take as long as the end of August to even get in to see the doctor. I wish there was someone that could help get me in to see that group at IU.

As for my primary care doctor, I told her that the current medication that my PM DR is giving me is not working as well as before. My Primary DR said that was because most likely that my body is opioid saturated and in order to keep it to a lower dose is to dry my body out so I can start over with the medication to manage my pain. I told her that I wanted to go to IU to get my pump/catheter problem fixed so I can have my pump back normal. I told my family doctor that my current pain meds aren't helping as well as before - her guess was that my body might be saturated with opioids (because of the high amount of oxycontin and oxycodone) that I am on to help manage my pain. She said that if I get into IU they might look at that and manage my pain without increasing the oral pain meds by drying me out and starting over so they don't have to increase the oral meds more than what I am currently taking. If the pain pump cant be fixed to manage my pain as before.

My family doctor was not trying to hint about a rehab stint for me. She really didn't want to get into that discussion, I just asked a question, why my current pain meds aren't working as well as before. I told her that my current PM DR didn't want to increase the meds to help me with the pain. She said that more pain meds could cause me to stop breathing. In order to keep it to a safe level a body need to be dried out and then start over with those pain meds. All I want is to fix my pump and manage my pain level during the process (by taking oral meds if necessary) - till they can fix me.

My big concern is trying to get to IU. I hope once they look at my referral they accept me and get me in soon as possible. I wise that I knew someone that can PULL SOME STRINGS to get me in at IU. I really want to see White Beards pain management doctor.

Susie, I have been looking online at Medtronic to see what recommendations they have regarding my problem - catheter leaks, pump problems etc... Even not to use heat on the catheter etc... Using Medtronic's website is very confusing.

Thanks

IndianaBoy
Regular Member


Date Joined May 2016
Total Posts : 45
   Posted 5/17/2016 1:03 PM (GMT -7)   
One other thing I would like to add. I hope that I get some relief soon from this chronic Lower Spinal Pain. This has been going on for the last 8 months since my pain pump/catheter stopped working. I don't have to tell you how horrible this pain is living with it 24/7 (day in and day out). I just wish I can get this fixed soon. I really want some help from the medical community to get some pain relief.

IndianaBoy
Regular Member


Date Joined May 2016
Total Posts : 45
   Posted 5/18/2016 4:09 AM (GMT -7)   
Susie,

I reread your post from 4/14/ and about the doctor or nurse being able to check my pump at refill to see if the pump is working properly. When I have my meeting this Thursday with my current PM DR about his plan on opening me up and just looking, I will ask that he replace everything, but if he refuses and might only consider changing out the catheter is that acceptable in your opinion or its all or nothing. In other words, I should then have my current PM DR send a referral down to IU and hope they consider me and accept me for a second opinion and as a patient too. Not sure what I will do if IU does not accept my case.


Not only do I have to deal with the pain but also the stress - trying to find someone who will change out both the pump and catheter.
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