SCS vs. pain pump
 

Please excuse my lack of knowledge, but how did all of with pumps decide which type of pump to use? stimulator or med pump? Can you get trials with both before you and your md. make a final decision? thanks, Pam

Hello! And Welcome!!!

For me, I am only 20 and so my dr wont give me a pain pump because of my age and if and when I want to start a family he wanted to assure I can be pregnant. SCS and pain pump are totally different, It just depends what works per person. Yes you do get trials of them before. Usually a week long. I knew immediately that it helped. Most people notice immediately with the trial if they get relief, but you get it for a week to see if you like it! :) If you read back on posts to lostmary she has a pain pump and has had ALOT of relief!!! :)

hi ~ i had the SCS implanted for 6 months, but it had to be removed because i didn't have enough fat content in my body to hold it in. in other words, the generator tried to work itself out. ick. so then they did the trial for the morphine pump, which made no sense cause it's 3 times the size of the SCS. :rolleyes: go figure. anyway, it worked wonderfully, and all my pain was relieved. i was delighted, but then they told me i couldn't have it. lol


so if i were you, i'd go for the pump, as the SCS just irritated things more for me. it made my sciatic nerve hurt even more. :mad: just my 2 cents.

best of luck. hugs, lee :)

I looked into both the pain pump and the SCS when I was trying to decide what to do. When I went to see the dr. who does pain pumps in my area (he's considered the best dr. who does it in my area), he said to go with SCS as there's less chance of infection, and also ins. companies have been fighting him on reimbursement for the pain meds. lately. So, since I value his opinion, I went and did the trials for the SCS (both lumbar and cervical) with my pain mgmt. dr.. The trials went good and I'm getting the permanent implants Aug. 19.

I've heard that some folks' meds. for pain pumps can run $5-10K every refill and that's why ins. companies prefer the one time cost of a SCS implant. Others, however have gone with the pain pump and have said they don't have any problems with their ins. companies paying for their refills.

I'd recommend you talk to both doctors (the one who'd do the pain pump and the one who'd do the SCS) and see what you feel more comfortable with. For me, the ins. issue was a biggie, as my ins. co. already pays out $6K a month for another medicine I have to take.

Good luck in your decision. Let us know what you decide.

Anyone tried Cervical Pump?
 

Hi! I am 30 and have been in pain for 11 years now. Long story short, I have tried a regular pump implant which didn't help enough to continue but it is still in my body because it is such a big surgery to pull out.
As of now, one Doc wants to do a Spinal cord stim in my neck but I have had mutliple brain/neck surgeries and I and even the Doc doesn't think it has a a great shot of getting into the epidural space and working! He still wants to do it before I try a cervical pump. Insurance of course will not cover any of this! Then, I have two other Docs who say to skip SCS and do cervical pump. One wants to do a trial and one wants to go ahead and implant it. Neither has done more than four because it just isn't done anymore. That's how scary it is!
Has anyone had this? Advice? Know of any Doctors who have done more than four in US? Need help:confused:

The type of pump you use depends on what company your Doctor uses. If your Doctor works with Medtronic, you get a Medtronic pump, but in my experience for pumps, I would go with either Medtronic or St Jude which use to be ANS. I have a Medtronic. Hope that helps

Hello Tired in Texas
 

Just wanted to say 'welcome' and glad you've come to the SCS/Pain Pump forum......
I am so sorry tho, for what you are going thru! :(
I can certainly see your concern! You're being left with few options, all of which appear to be 'guess work' from your physicians.

You are doing a good thing by checking around. I certainly wouldn't commit to any of these options until I've researched all there is to know.
And you said your insurance is not covering these procedures!? oh my.
My first instinct would be to suggest doing a trial before you make any decisions.
So, you've already had a pump and it is still in you, but you don't use it?

There are a couple more members here at NT who come to mind. I think they would be able to offer some good input. I'll track them down and point them to your post and see if they've got some good input for you.

Stick around ok! There are SO many caring folks here...
We continue to learn from one another as we share our experiences.
Caring
Rae
:hug:

Thanks Rrae
 

Thanks for the support and that would be great if you could contact some other members who you think might be able to help.
I have chronic headaches and neck pain due to three brain/neck surgeries and I did do pump implant in lumbar region. I tried Prialt first because I tend to respond better to non-opitaes, but couldn't take side effects. So, I was on Dilaudid, Klonidine and Baclofen and went up to 20mg, but it didn't even help as much as the oral medications. Crazy, huh? So, I tappered off and now it is running saline and I am back on oral meds which is causing my body to fall apart.
I just can't find any information about cervical pump trials or implants and especially can't seem to find a Doctor who has done more than four! I am having a hard time figuring it out. Of course, insurance won't pay for it and that adds to the pressure. Anyway, thanks you so much for the e-mail and I will look forward to hearing from you or some of your friends. Take care and hope you are doing well, Melissa

Hi Melissa
 

I will send you a 'visitor message'....it will be on your profile page, k.
Rae

Hugs Melissa
 

Hi Melissa, and here come hugs your way. :hug::hug::hug: I am an SCS patient myself so I have no experience at all in pumps, but I do care and just want you to know you are in my prayers that an effective solution will be found for you and soon!!:smileypray: I do understand how hard a life living in pain presents. Rae is so right, this place is filled with MANY caring people, and I am sure she will work to find the folks to steer your direction so you might learn of the cervical pump solution you contemplate. Rae is a gem of a friend, and I am glad she reached out to me as she is doing with you.:grouphug:

My prayers go with you that you find THE solution for your pain,:smileypray:
Mark56 :)

Thanks, Mark. I appreciate your thoughts and prayers. As you know, chronic pain isn't easy and right now, I feel extremely nervous about what all the Doctors are calling my "last options".
One of them is an SCS in my cervical epidural space but because of all the surgeries, the Doctors and I really don't know if they can hit my facial nerves. If you don't mind my asking, where do you have the SCS? Did you do trial first and was it successful. Obviously, the implant helped and I am so happy for you. I also hear the paddles can break? Did that happen to you at all? Doctors are telling me that if mine break, they might just leave them in because I have had so many neurosurgeries and they won't want to cut again. This also scares me to have metal pieces floating around in my neck forever! If your SCS is in the cervical area, I could really use your help. Haven't heard anything on a pain pump in cervical yet from anyone even on other sites. It is like the procedure doesn't exsist. Thanks for the support and you will be in my prayers too, Melissa

SCS for Lumbar Peripheral Neuropathic Pain
 

Hi Melissa! I have been through so many things in the five plus years of my treatment since the wreck that my pain doc, the guy I trust and who is in charge of my pain care, told me the SCS was really the end of the treatment road for me and that in his thought I was a perfect patient for the procedure.

I had the Trial surgery on 13 May at an outpatient surgical center. There was minimal anesthesia administered since I was supposed to be awake for the tweaking of the leads once they were inserted into my dural space along the spinal cord. The treatment being directed toward my unending unrelenting horrendous chronic nerve pain was placed about T8/T9 to be sure to get the electrical impulse treatment above the nerve roots that feed out to my legs. The Trial period was so WONDERFUL, a seven day period of peace and freedom from that awful pain.

I cried during the Trial period when I at first realized, fully recognizing I felt NO PAIN when my wife asked how I was feeling on the first day of the Trial. Oh, what Bliss to be at once FREE from pain, and I was in control of the impulses through the remote control they supplied for the Trial. AHHhhhh.... that peace. It was then a sense of dread began to populate my mind as I realized the seven days would end. I would have to give it back. They would take it from me. I did not want to return to pain.

I felt the HARDEST part of the whole fol-de-rol was that PURGATORY between Trial and Permanent Implant. PURGATORY! Not quite damned, but not quite saved either. A stasis between. Knowing full well what would address the pain to which I had to return and having to WAIT for the permanent as Fiona, Calewark, and others are right now. You see, once we know the peace of SCS it is SO HARD to go back to the pain of the BEFORE and wait patiently as calendar days tick off passing by. Time seems to take a slower pace for us in the waiting. It seems to us so unfair, but then life is unfair, by and large, we live in ways endeavoring to bring fairness to others, but the process takes as long as it is going to take; so, I waited from 20 May, the date of removal, until 29 June, the date of implant surgery, then until 9 July before I could return to a program with the SCS which DOES help manage my pain.

I do have paddles inserted and sutured to my spinal cord through the T8 space, where a laminectomy was performed to make a sufficient opening through which to insert the paddles. The incision at that location is about 5 inches, then a smaller incision appears at my right hip, where the generator is located. No one has spoken to me or made any disclaimer about a risk of breaking the paddles..... Interesting...... since the paddles are inside the dural space with the spinal cord, as I understand it, I don't know what I could possibly do to cause breakage of the paddles. BUT [this is a BIG BUT]- the process of healing so sufficient scarring can occur to tightly hold the paddles in place, I must be careful for this eight week period not to reach above my head with my arms, nor am I to bend, twist, or lift. NO EXERCISE regimen is allowed, that is, other than walking on the firmness of the earth beneath our feet, and THEN I am supposed to exercise due care to avoid tripping risks, because a fall could result in dislodging the paddles or some other connection and then I am where? Back on the operating table.

I can't think right now who has a cervical location implant. I know Burntmarshmallow has the implant for Trigeminal Neuralgia, pain in the face. Fionab is awaiting a dual implant, both lumbar and cervical, she may have helpful information about cervical implant work such as you now contemplate. Rae is a fount of knowledge about who has had what and where to point you within the forum, so writing to her is a very good idea.

Rae may also be able to direct you to someone who has had a cervical pump since you are also contemplating that.

Thank you for your prayers. You and all of the others who have lifted us up in prayer are helping us through this process. I am healing, and feel so proud of myself that I took my first since surgery walk around our block here in Golden, CO. The sunset was absolutely beautiful! It felt good to be back outdoors again. I am bound and determined to make it positively through this healing process and depend heavily on my faith to push on through.

You remain in my prayers Melissa as you research and decide this very important and delicate issue. May God guide you and your medical advisers throughout this process,
ASAP [Always Say A Prayer- I learned that from Calewark here on the forum],
Mark56 PJ :)

Morphine pumps have given me back my life
 

Sorry I'm so tardy in getting back to your very important question:

I'm now on my 2nd morphine pump and I'll tell you, they literally gave me back my life - ironically I didn't know it till after my battery died on my first one after 5 1/2 years of service. Because of additional pending surgeries, I had to wait 4 months before my second pump was installed, and wow was that the longest 4 months of my life.

As far as it working, there's only one way to find out. Let the doctor order the overnight stay in the hospital so they can run the test and see if it will work. You're going to know right then on the spot if this will work. When I had my test, I was bawling in tears it felt so good to have the pain ease up that much. Four hours later the pain returned and I'll tell you I was crushed.

Morphine pumps are no silver bullet. They don't get rid of all the pain, but they do moderate it so you don't have the horrible increased levels you're experiencing now.

As far as getting them paid for, they don't come cheap. My first one cost $20,000 and my second one was $30,000. Refills are over $1,500 a pop, but as long as the documentation is in place I know that most insurance will pay for it including Medicare. While there are some who claim they're no big deal as far as size and location, I'm not in agreement here. After creating the pocket inside my stomach for it to fit in, I had the second one slide down directly on the belt line so it can be annoying that's for sure - but the benefits outweigh the good, at least for me hence I'm thankful each and every day for this amazing piece of technology that's flowing through my body. All the best and I hope you can finally get some solid relief so you can regain some quality in daily life, Bob.

Thanks for getting back with me and for all your information. Is your pump catheter located in your lumbar or in your cervical area? I actually have a pump in my back (lumbar) but it really didn't help me enough to continue it. However, it is still in my body and running saline because I am not up to having another surgery right now and might use it for my neck.
I am really concerned about having the catheter placed so high in my neck because I can't find a Doctor who has done more than four and they are so dangerous compared to lumbar pump. It isn't done much anymore for a reason. If the Doctors are even a tiny bit off or if the medicine is too much for my brain to handle, it can give me a stroke, seizure, paralysis and even kill me! I am going to make an appointment at the Cleveland Clinic to get a fourth opinion and hopefully, find a Doctor who has done more than four. Unfortunately, it is a shot in the dark if I will go to the Doctor who's most experienced because none of the Doctors' profiles say that they even perform this procedure and when I call, no one is able to help me. It just isn't done anymore except with cancer patients who are already dying and that is truly scary. For me, I am willing to take the chance but my parents are not and I don't blame them.
If your pump is in the cervical area and you don't mind me asking, who did yours and how many has he/she done? Also, if you know anybody who might be able to help, that would be so helpful as well. Thanks for your help and I hope you are doing well, Melissa

Location of my pump
 

My pump was installed to the left of my bellybutton, but now it's slid down and sits right on the waist. The catheter was placed through the middle of my body and is sewn into place along my spine on the lower back. It does get sore down there, and there's certainly an annoyance to having the pump on my belt line, but when you're talking about this level of pain, all we care about is that it works. For me it's been a godsend. Best of luck.

No I'm sorry mine is in my tummy
 

I'm sorry, but my pump is the kind that's located in front on the right side of my tummy and then it's all sewn into place in my spine. You're in a tough situation and as far as how to find a doctor who's got the necessary experience, it sounds like you might be facing some serious travel ahead. With the rarity of this type of dangerous procedure, I can't help but worrying about you being between the rock and the hard place. I know you'll figure out the best path, and I sure do hope you find it soon. Take care, Bob.

Thank you Bob
 

Hey Bob! Thank you for being there and a rising helpful star to others in need! So GREAT!:You-Rock:
Mark56:)

Prayin' for you Melissa
 

Definitely praying for you Melissa. :smileypray: You are faced with such a difficulty in even knowing whether to place your trust in someone you have yet to meet without the benefit of recommendations. May you be able to thoroughly interrogate the doc with whom you meet so as to figure out their ability to provide help to you, and also may the doc be conscientiously forthcoming in their discussion with you so as to help you gain understanding which will aid in decision making. I hope and pray that you find the complete help you need.

Pulling for you,
Mark56 :)

SCS for face pain
 

Melissa,

I had a cervical SCS for face pain implanted in June. My face pain is primarily in the V3 area of the trigeminal nerve. This gave my surgeon the hope of being able to reach the face through my spinal cord. My trial was successful despite the coverage not quite reaching the face. I still had relief and now the permanent implant has had great coverage so that I have been able to reduce some of my medications. I think by doctor is in the minority for treating face pain from the spinal cord. I am so thankful he did it!!

I do not have the paddle type of implant, but I still need to be restricted for three months so that everything scars into place. It is tough to remember to not bend over to pickup something.

I hope you are able to continue to find out answers and then get the relief.

Emelie

Thanks
 

Thanks for all your support. I am heading to Cleveland Clinic and hoping Dr. Cheng who I found on internet can help me figure things out! Anyone been to him? Thanks again for all your support and prayers. You will alll be in mine, Melissa

Trigeminal Neuralgia Face Pain
 

Hi Emelie-

Just wanted to let you know, if you need the info, there is an active and growing group of folks here who have and are pursuing implant for face pain. A thread started on this is here:
http://neurotalk.psychcentral.com/thread124048.html

Cheryl aka Calewark is undergoing surgery for her permanent implant this next Thursday, the 5th.

You are strong, going through all of the pain, the Trial and then the Permanent implant, followed on by your sharing here for the sake of others!:You-Rock: May you be borne up with hopes and prayers for healing so that your three month "healing in" process goes by well and quickly. Here's hoping your success is complete!:smileypray:

Oh, and hey, we are throwing a party tonight in the Chat room accessed up at the upper right side of the screen. A posting regarding the times depending on your time zone can be found under the SCS & Pain Pump sub forum. Cheryl and Burntmarshmallow, both face pain patients, will be there!

:hug:z
Mark56 PJ :)

I can explain morphine pumps a little
 

Morphine pumps are decided based off of a test where they check you into the hospital overnight. They then inject you with morphine directly into the spinal fluid. You'll know right then and there if it works. If it does like it did me, I was actually crying it felt so good to have the pain ease off to such an immense degree. You're kept in the hospital since morphine does/might/could have some rather nasty side effects such as slowing down your breathing and heart muscle that can be rather detrimental.

My pump has changed my life, but it's not a panacea and so if someone thinks that they'll get rid of all their pain if they just get a pump, they're usually very sad the with end results. It works very well for modulating pain so you don't have the severe highs and lows, but it's not a silver bullet. It's also not cheap, so there has to be a ton of well documented medical paperwork showing the need after all other options have usually been exhausted. They're rather large and annoying, but when you're trying to get the pain to ease up no matter what it takes, then and only then do I think that this should be looked at seriously.

The most horrific story I ever read was about a person who lied during the test about it helping ease the pain when it really hadn't, they got so wrapped up in knowing they had to have one. Then it was installed (because the doctor has been told the test had worked) and then the patient complained it wasn't working. In this persons case, I doubt if it ever will. If you have the test and you notice a considerable backing off of pain, then it just might be the wonderful solution that can give back to you as much life as it has me. Best of luck, Bob.

Hi, Emelie. Thanks for telling me about your experience with your cervical SCS. Who implanted yours? If you liked him, I could use another opinion. My Doctor is Dr. Gabor Racz from the Texas Tech International Pain Center and he wants me to do the SCS but can't give me any gaurantees which I know at this point is to be expected. However, I would like to see a little more hope of success from him. I am so glad to hear that yours is helping and continues too! You are the first person I have talked to who has actually ahd a cervical one and it is good to hear that it can work! Thanks for the info, Melissa

Information on Pain pumps
 

I see so much information on SCS. My doctor is tellin me that the pain pump is my last option for my pain to go away from a bad hip replacement
3 years ago. I am looking for as much insight as possible.

Hi Janen
 

Janen, I am not an expert on hip pain or what can be done after a hip replacement surgery but I do know about spinal cord stimulators and pain pumps. I have had three neurosurgeries which has left me with severe, chronic headaches and neck pain. I actually have a pain pump implant but unfortunately for me, it was unsuccessful. So, now the Doctors are recommending a SCS in my neck but for my situation, it is a long shot for helping my pain due to sevre scar tissue from the surgeries. It makes it difficult ffor them to get the leads in.

I know more about the SCS and how it works in the neck: so some of my information might not be entirely accurate but will try to give you as much info as I can. Depending on your type of pain and its' location, you could possibly be a candidate for a SCS or just a stimulator in general. The SCS include leads which are long wires with electrodes attached that will be placed into your spinal column with the intention that the electrodes will be able to get to the nerves that go to your hip or leg. If they can get the electrodes in the right location, the hope is that you will be able to feel the stimulation instead of the pain. However, I have no idea if it would work for your pain. You would do a trial first just like for a pain pump at a hospital or outpatient center (depends on Doctor) where they only put the wires in and see if it is helpful. If it is, then they will pull them out and wait until you heal before putting in the implant. The implant includes the leads and the machine that runs it which can be placed in many diffirent places such as your lower abdomen depending on where leads are.

As for the pain pump, it can be very effective for most pain and can make the medicines you are taking orally less harmful on your body because it bypasses your blood stream and goes directly into your spinal column which also allows you to use less medication. Of course it comes with some drawbacks, the pump can change your hormones ( I was only 27 and it has made me unable to have kids), can make you gain weight, etc.. The trial is meds being fed using a catheter into your spinal column and will show if it will help you or not. Definetly ask your Doc about a stimulator and research it because in my opinion, I would rather not be on drugs for the rest of my life but still a pump could help you a lot. To find a Doctor who uses these procedures, you can go to Medtronic or St. Jude Medical website who make the machines and they have a list of all Doctors who use their products and can answer general questions that you may have. I hope that I was able to help. If you have any more questions, just let me know. Hang in there and good luck!

Pump
 

Hi,
I have had my pump for some time now. I started out with a SCS but I never made it past the the first week as I had a bad infection. After having to wait a year,I had a pump implanted and so glad I did. I have had some problems but after working thru them, I am mostly pain free.

Thank you for reviving this thread Teddii !
 

This is an important thread and I'm glad you brought it back up to the top!
SO glad the pump is working out for you!
There will no doubt be folks coming to you with questions - we just don't seem to get alot of 'pump talk'.......
Sorry to hear you acquired the bad infection with the SCS.....but it's good to hear the pump is working for you!

Rae
:hug:

The two couldn't be more different
 

Sorry. but this time you're trying to compare the two which are about as alike as an airplane and a boat. While they both are a mode of transportation, they just don't have that much in common as far as how you get from point A to point B or in how they handle pain.

As far as which way you should go, I'd love to tell you that you're the one in charge, but I know that's a lie. It's your doctor's and your insurance company who'll ultimately make that choice. These decisions will be made after you've gone through the tests to see how you respond to each type of pain therapy/treatment, not based off of what you think you'd like most.

You're seeking good and hard answers but you also deserve equally as direct answers.

After having my second internal morphine pump installed last year, with my situation, medical background and prognosis for the future, there's been nothing that's worked as well, but please keep in mind that no matter which way you go, there are always pro's and con's that you're probably not fully aware of. With a morphine pump there's the awkward pump that's now in the way and many times quite bothersome sitting on your stomach. Add with that the actual location where the catheter is sewn into place in your spine. Both are annoying and sometimes even painful, but for the added pain relief it's worth it. Doing simple things like bending over isn't near as easy once you're wearing this internal device 7/24.

Find a doctor you can trust with you life. Then go from there. Unless you're lucky enough to have the resources so you can pay the 30 grand or more for a pump, most of these decisions are ultimately left up to the doctor(s) and whoever is paying for it. Meanwhile learn all you can about it so you can decide for yourself if this is really something you can live with. There's no perfect solution. Morphine pumps will not make "all" the pain go away in most situations, but it will help moderate the pain more evenly throughout the day so you can be more comfortable. Only those who have gone through the test to check first and then have been very honest with the results should consider this as an option.

The worst situation I've read of so far was when a person lied during the test about how well the pain had subsided during the test even though it hadn't. Because of their lie, the doctor did install the pump. Then the patient was upset later when it didn't work. It wasn't the doctors fault or the pumps, it was the patients yet that person couldn't figure out why their "silver" bullet wasn't giving them the pain relief they expected.

You're seeking answers and you're on the right track. Now just keep an open mind to what the professionals say and go from there. It's not an easy road, but it's one worth taking for some health and pain situations. Best of luck, Bob.