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Road to hopeful recovery! Intrathecal Pain Pump Journey....

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Posted 5/1/2012 6:06 AM (GMT 0)
I am new to this forum but was relieved to read that I am not alone. I have been dealing with chronic pain issues for 4+ years and only now do I hold some type of hope for a normal life.

My injury resulted in a diagnosis of CRPS in my left leg for which I received a SCS. I also injured my lower back and had a Lumbar Fusion done. The fusion resulted in a diagnosis of Failed Back Surgery Syndrome and I suffer from horrible pain in my lower back.

Until recently, my pain management specialist just wrote prescriptions for narcotics, muscle relaxants and nerve medications which provided little pain relief. I am now with a new PM doctor and he has recommended Intrathecal Pain Pump surgery.

With everything I have tried in the past I sure hope this has better results. I have had such a positive experience thus far with the new PM doctor that I have decided to blog my journey....I sure hope I can really provide helpful information to someone in hopes they will not have to suffer as I have.

On visit 1: I met with my new PM doctor to discuss viable options for me. In addition to the IT Pump there was also consideration for adding another lead to my current SCS.

On visit 2: I met with a representative from my SCS company and it was determined the revision was too risky at this time. I have been scheduled for the end of May 2012 for my IT trial. Will update as the time nears closer.

AJ
Posted 5/1/2012 10:16 AM (GMT 0)
AJ, welcome to Healing Well, but sorry you've had reason to join us.

I have full body CRPS that's now about as complicated as it comes - the result of a knee injury 13 years ago. I too have multiple back issues (CRPS, as well as multiple fractures and disc bulges) and it's not a good place to be. I often feel that each issue feeds the other and turns into a vicious cycle. I've had my SCS for six years now, and IT pump for four. My pump is more mainly for a muscle relaxant though. I have very bad dystonia in my feet and ankles secondary to the CRPS, so I have a baclofen/bupivacaine pump to help with the muscle tightness and spasms.

What medications have you tried? Are you in an area where ketamine infusions might be an option for you? I don't have a great deal of success with them personally - in part because I'm very sensitive to ketamine and my doctor has enormous difficulty controlling the side effects - but I know a great many people who've been helped by it.

As far as your CRPS goes - is it just your left leg that is affected? Have you ever tried Graded Motor Imagery - especially Mirror Therapy? It does have mixed results - again I didn't find it overly helpful - but I know a couple of people through various CRPS forums who've managed quite incredible pain relief using a mirror box. Do you do any physiotherapy? It's important not to overdo things (it took me 10 years and nearly dying to learn to pace, so I guess I'm not one to talk!!) but ever, ever so important to keep exercising and keep using that leg as normally as possible.

All the best with your IT trial. Do you know what meds they plan on using at this stage? Please do keep us updated :-)

Laura
Posted 5/1/2012 1:27 PM (GMT 0)
 

      Good morning AJ!

         Welcome! wink  

             I'm sorry to hear of your pain troubles....but hopefully the pump will give you some relief. At one time my Dr was sending me in to get one...but canceled after looking at the MIR of my lumbar....said it looked fine, and that no Insurance Co would approve it. I disagree with him big time. shakehead

     One of our Moderators seems to be our local expert on the pumps (Straydog)...and I'm sure once she see this post will Welcome and comment on it.

    Take care,...and Enjoy the forum!

 SE wink

    

Posted 5/1/2012 3:01 PM (GMT 0)
CRPSpatient~

Thank you for ALL of your feedback. I am so sorry that you have had to work through so much but if it all helps...it gives hope and help to others who read about your struggles. I have never heard of some of the things you spoke of and I have seen some of the top specialist in the country.

To start, I have tried every oral medication known to man, most with adverse effects up to the point where I had a Grand Mal Seizure this past January from tring to ween down off them.

There has been no mention of the Ketamine infusions you asked me about, my doctor is starting with Baclofen/other non~narcotics and working down to morphine/diaudid and other narcotics. I am a flight attendant and would like to get back to work but unfortunately the FAA will not allow us to fly while taking controlled substances. So my trial will be a little unconventional. I will, however, ask aout the Ketamine infusion during my pre~op appt.

And yes, my CRPS is only in my left leg going into my left foot. I have heard of it moving to different areas of the body but that hasn't happened to me. My SCS works adequately enough to provide me with some normalcy so I will leave good enough alone.

Thank you for all your help and good luck~
Posted 5/1/2012 3:55 PM (GMT 0)
Hi AJ
I wanted to give you a warm welcome to our cp forum. Glad you found us but sorry you are suffering so much pain with crps. You have already heard from Laura. she is our expert on this subject, she suffers immensely.
I hope the pain pump with give you some much needed relief.
hope you will keep posting with us and let us know how things are going.

Suzane
Posted 5/1/2012 4:33 PM (GMT 0)
Hi Screaming Eagle~

If I can offer any advice...get a 2nd opinion on your back, 3rd if you have to. I was seeing a top specialist who has the Redskins football team and other high profile clients as patients and the only further treatment he could offer was another fusion surgery...BECAUSE THE FIRST ONE WENT SO WELL...NOT!!!

Also, I saw the post from Straydog....very informative. Feel a little more prepared for the big day.
Posted 5/1/2012 6:13 PM (GMT 0)
Hi AJ and welcome to the chronic pain forum. I am glad that you found us but sorry that you have to be here. It sounds like you have pretty much been through the wringer with treatment and meds. That seems to be the life of a chronic pain patient. You would think with all the money invested in these bodies we should feel like a million bucks, lol.

I see that you will be doing a trial for a pump. You will know immediately if the pump is a success. I thought I had died and gone to heaven when I did my trial. But, my dr did warn me I would not feel that wonderful after the pump was implanted and he was right. Little did I know he was inexperienced with pumps and the meds used in them. He left me hanging for two years in pain no one should ever endure when they have a pump implanted. What he offered for BT pain was nothing, so I did not accept anymore of the scripts, no point in wasting money.

I have a new pump dr now that is a retired neurosurgeon. She has over a decade of experience with pumps and at one time implanted her own patients pumps. She mixes her own compounds in the office, which is wonderful and convenient, especially if something needs to be added or removed. You will still need medication for BT even with a pump. Yes, even with a pump we still have pain.

I urge you to use our search feature here at the forum at the top on the right, type in pain pumps and you can pull up a lot of information concerning pumps as we have discussed them quite a bit here at the forum. Pumps are like any medical device, they have their pros and their cons. Finding a new PM dr to take over your care can be a problem once a pump is implanted. I am not sure if it legal issues with the drs or what, but they generally do not take new pump patients on. Thats a drawback with a pump.

Anyway, I wanted to pop on and tell you hello and welcome aboard....Susie
Posted 5/1/2012 7:20 PM (GMT 0)
Hello Straydog or Susie~ (not sure how to address ya)

I found this website last night and your posts about your surgery was the first I saw. I related to you in the area of the spinal headaches! I had a myelogram done several years back which resulted in mind blowing headaches. I was throwing up, couldn't stand any light, passing out to the point of being admitted to the hospital. Once admitted I was S-O-L because no doctor would do a blood patch due to my SCS. I sat in the hospital for 2 weeks with headaches and an dditional 4 weeks due other complications that arose.

So I am quite frightened at the possibility of getting them again.

I'm new to some of the terminology so can you tell me what BT means?

The doctor I'm seeing is a Specialist in the field of SCS/IT pumps (has a 98% success rate) so I hope I have a good outcome. I intend on utilizing this forum, it seems to have a wealth of information on it as well as many others who can truly understand my issues, concerns and even triumphs.

I am concerned about future issues with this pump but for now I just want some relief and a little more of my life back. I just take each day one at a time and pray for some relief.

Thanks for touching base.
Posted 5/1/2012 8:15 PM (GMT 0)
Hi AJ, BT mean break through pain. The pumps and extended release medications many get put on handle the pain but sometimes they get spikes in their pain and will need something for the break through pain. Please don't hesitate in asking, we are so use to using these terms here we forget not everyone knows them, lol.

I am assuming your dr is looking at Medtronics pumps, which is what I have. Now, you can get what is called a PTM device to use with the pump and if you have spikes in pain you can give yourself what is called a bolus, which is like a pain shot. Your dr has to program the PTM and they really do work. If you don't get the PTM at the time of the implant of the pump and were to decide later you wanted one it would cost you around $1,000 out of pocket to buy one. If you have not visited Medtronics website, do yourself a favor and check it out. They have one the best websites around to learn about pumps, SCS units and such. I have an old pump and these came out after mine was implanted but I know of some that have the PTM and it can be a life saver.

I have never had the spinal headache and needed a blood patch so maybe it was someone elses posts you were reading. But I do know about them and especially from people having myelograms that had to have the blood patch done. I wouldn't wish that one on my worst enemy.

Its great that your dr knows about the pumps, they are useless if a dr does not know how to handle them. Most drs are really conservative with the meds in them and the dosage, however, my dr is not one of those and thanks to her I now have some quality life. I have 4 different medications in my pump. I cannot say enough good things about her. But, she is a very intelligent dr and knows her business. Do you mind sharing what your future concerns are with the pump? If you have any questions I can answer I will be glad to. Take care...Susie
Posted 5/2/2012 3:04 AM (GMT 0)
Hi Susie-

I am concerned about traveling with the pump. I fly for a living and I am concerned about having issues with the pump and being out of the state or country. I am also concerned about dependency, being forever in the need of a pain management doctor where ever I may move. Of course these concerns don't outweigh the fact that I currently have no life due to severe back pain but they do weigh on me some. There are so many other questions that run thru my mind that they are too vast to ask. I just hope that this surgery works.
Posted 5/2/2012 3:06 AM (GMT 0)
Tmjpain-

Thank you for the warm welcome.
Posted 5/2/2012 5:42 AM (GMT 0)
AJ, keep in mind the meds in the pumps is much stronger than the oral meds we took. This is why when you first start out with a pump the drs start at the lowest dose possible and slowly titrate the dose up until they get the best pain control. Usually you end up on less meds that what you take orally.

You do have to make sure to get your pump refilled on time or you will have withdrawals. I can understand what you are saying about flying and being out of the country. Unless a dr is trained in pumps they cannot touch these pumps. As a rule hospitals do not carry the equipment for pumps either. What does your dr say about you flying with a pump?

My private email is listed in my profile here at the forum if you ever want to email me any questions....Susie
Posted 5/2/2012 7:36 AM (GMT 0)
Hi AJ and Susie -

Susie - I don't know how your doctor manages pump patients but with me, especially as abrupt baclofen withdrawal can be so very dangerous, we arrange my refill date for a good week or so prior to my non-critical alarm date. This just gives us a little bit of 'wriggle room' should the pump run fast, or for some reason I (or he) not be able to make the appointment. It does mean that he pulls out a little extra leftover before refilling than he might otherwise, but feels it's safer this way.

Also interested in your comments about how your doc mixes her own compounds in the office. I can understand the convenience - my doctor writes a script for the compounding pharmacy to make up, so if he makes any changes I have to wait until the NEXT fill for him to get that combination - but I'm glad he does it this way. I know two other people whose doctors compound themselves (different doctors) who've ended up with serious infections.

Laura
Posted 5/2/2012 12:55 PM (GMT 0)
Laura my refills are done before the alarm date too, mine comes out to being refilled almost every 4 weeks.

Other than what I have already posted, my dr knows compounds and mixes her own meds which is a plus for Medicare patients. Medicare pays so little to the pharmacy for the prefilled syringes that it does not cover the actual cost of the meds and many drs locally stopped handling pump patients because of this. She has a specific room that she does all her compound mixing. I wonder how or what caused those other people to get infections?

I do know when I used private health insurance before Medicare was involved the pharmacies inflated the cost of the prefilled syringes that was just incredible. Of course our healthcare system here is totally different than in your country.....Susie
Posted 5/3/2012 10:30 PM (GMT 0)
I'm completely new to the idea of a pump. Where is the pump? Is it a good option for someone who will have severe pain for a LONG time? For instance, since my condition is caused by brain damage...my pain is here to stay, and I'm 24. So if I got the pump would I have to "expect" to always have or need it?
Posted 5/3/2012 11:09 PM (GMT 0)
Susie, hearing that sort of thing makes me so mad. There are a lot of people here who have problems accessing proper healthcare of course, but it seems nothing to the state of things in the US.

Lexi, the pump is implanted under the skin on the abdomen and a catheter runs through from there to the spine. The size varies a little bit I think - but mine is probably three inches across and a little over an inch thick. The battery does have a limited life - the estimate is usually five to seven years - after which the pump needs to be replaced. They aren't used lightly - only in people with intractable conditions. I know that intrathecal baclofen -which is what I have- is used in Cerebal Palsy patients as that is one of my PM doctor's specialities so I would guess that means they can be lifelong if needed. They can be removed if need be though. Not sure if that answers your question, but hope it's done something.

Laura
Posted 5/4/2012 4:00 AM (GMT 0)
Susie, what state do you live in? I'm hoping your Dr. is near me! Lol.
Posted 5/4/2012 2:06 PM (GMT 0)

Hi Lexie_

I too am new to the pain pump experience. I just join and have decided to post my journey through all this. I hope I can provide you with valuable information. Like I said, I'm new to the pump but I do have a Spinal Cord Stimulator that is helping my Complex Regional Pain Syndrome (CRPS) in my left leg and foot but can not be reprogrammed to help my back.

I have just met with my surgeon and we have decided to go forth with the IT pump. I have severe and debilitating back pain and when I have flare ups, like now, I am bedridden for days. I have my pre-op appointment next week. Will keep you updated.

AJ

Posted 5/6/2012 1:03 AM (GMT 0)

Hello Everyone-

I have a question and I am wondering if someone can answer it for me. Yesterday I talked to my surgeon's scheduling nurse about some aspects of my surgery. When I inquired about spinal headaches after my Intrathecal pump trial was in place she assured me that I would have no problem with headaches while the catheter was in place but would be at risk of getting a spinal headache only after it was removed. Can anyone tell me if they had a spinal headache with the catheter in and during your hospital stay?

Thank you

Posted 5/6/2012 3:57 PM (GMT 0)
AJ I did not have problems after having my trial.I hope the same goes for you.
Posted 5/29/2013 8:53 AM (GMT 0)
cool

Hi, I am new to this forum. I truly hope you can Help,
I am considering having a pain pump inplanted. I have
had sever back pain for as long as I can remember. Back in June of last year I had a spinal fusion from T10 to S1 (worse decision of my life) I have 46 screws and 4 anchors in pelvis and hips. Also broke my shoulder before surgery and just had it repaired in Jan. I was diagnosed with RSD back in 2003 and I believe it has returned with a vengence. In pain 24/7. I am taking a myriad of medications - gabapentin 3200mg oxycontin 30mg, klonipin 3mgs, ambien 10mg.120 cymbalta..
To get to the point I am very cautious about this pump.. first of all pain management dr not even sure he can get into spinal column due to the fusion.. due for a trial on the 17th of June...
Wondering in anyone can give me some feed back? Also, I am getting very depressed about this pain.

Post Edited (lilredhd) : 5/29/2013 2:59:02 AM (GMT-6)

Posted 5/29/2013 9:02 AM (GMT 0)
Hi lil and welcome.

This is an old thread and many of the original posters are no longer here.

If you would start your own introduction post you will get many better responses.

We like to welcome new members

Go to the top of page and click "post new topic " tell us about yourself and your journey.
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