Has anyone heard of this and or have 1 or know someone who does? I have heard that alot of people didnt like it.. im glad its reversible.. but i dont think i would whatever it throws at me oh well i just gotta learn how to live again and thats what i want i cant right now without the proper help for my body to take pain meds directly..and at 300th the amount then oral meds and it goes directly to my spine so im pain free HELL YEA ill take it! ive been through 42 surgeries whatever this one throws at me ill learn to adapt like i always do after critical surgery OH BTW HOW CAN I LOOK AND SEE IF MEDICARE/MEDICAID WILL ALLOW THAT KIND OF SURGERY? is there a way i can find otu for myself if my insurances would most likely cover it all?
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Dear Cori, I will do some research for you and see what I can find for you, see if I can find patient reviews or something. We have several nurses and a Physicians Assistant that my know something, though I suspect this is new.
I know that you got little relief for your Scoliosis with the last pump you used, so it would be worth a shot to me. I am on a disease modifying drug, a biologic, that shows down my immune system (autoimmune means your immune system is in hyper overdrive). I had asked my Rheum about a spinal stimulator, which is an implant, and he said NO WAY, has had too many patients with implants get recurring infections. However, you do not have that to worry about!
Let me see what I can find for you, and hopefully someone will respond who can give you first hand advice!
So nice to see you on the boards, we've missed you!
Hugs,
SK
ive never used a pump before but i looked and it said the pump and meds ARE covered by medicare.. i just gotta find out how true that statement is cause theres no way in u know where id b able to p[ay for it in my entire life lol AND I DESPERATELY NEED IT i jsuthope my insurance company goes for it
http://www.medtronic.com/patients/severe-spasticity/full-prescribing-information/index.htm
https://www.bcidaho.com/providers/medical_policies/sur/mp_70141.asp
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3323842/
http://www.youtube.com/watch?v=h6kgUtIDv7k
http://www.drugs.com/sfx/lioresal-intrathecal-side-effects.html
The youtube video shows the size, how old med us removed, and new is inserted. Several of the linkd are on patient reviews, problems, and varioous info. If you can't actually find a person who has one to talk to, that may be all the info that you have to go on!
I hopes this helps you Corinne!
Love and hugs,
SK
Yes, I never thought of that possibility, but I think you're right, JC. Would your Dr office call your Insurance Co for you? I would surely ask!
I'm sorry Cori, I thought you had a pump, but maybe it was a patch?
Hey there my dear,
I am utterly useless as to how your insurance works over there and very glad that I have the NHS here so I am not any help on that front.
All I know of the pumps is that they are able to stop pain quite effectively in a similar way to an epidural during labour. I do not know what you know of the blood brain barrier, but only very small things can get through (oxygen, hormones etc) due to kinks in the capillaries. It is to stop your brain from being covered by things that could effect how it works. By putting in a pump medication can be used to directly effect the nervous system instead of being stranded this side of the blood brain barrier. It is very safe and from what I have read about it in the past well worth getting done.
Just another thought about the insurance, tell them that it is likely to mean you spend less time back and forth to doctors and less time on lots of medications which they fund because that way they may be kind enough to say that a one off outlay is better than several slightly smaller outlays over the next several years.
Keep me updated... I will pop on Skype as soon as I am at home on Tuesday or Wednesday because at the moment I am on the mainland and sat in a room with a load of people and get funny looks for talking to the laptop.
Take care and massive hugs (careful ones of course) xxx
Just ask the people on the phone at the surgeon’s office or call Medicare.
Hi Cori,
I'm glad to see you, it's been a while! I don't have any experiences with the baclofen pumps. I know when they work, they are awesome, but there are a lot of negative things too. With your spine, I would think you need to be extra careful, but if you can find a great neurosurgeon who can make sure it's safe for you, I think this would help you tremendously. I hope the nurses wake up soon, I'd love to hear what they know!
As for Medicare/Medicaid, it will work exactly like any other surgical procedures you've had. Medicare does not pre-approve services, so they will not tell you upfront if they will definitely pay. But yes, the pump IS a covered service, so you really should not have any problems at all. Another good thing is that the medication itself is covered under Medicare Part B, because the doctor refills the pump himself. GA Medicaid also covers the medication just in case, but requires pre-approval.
Good luck with this Cori.... learn as much as you can before making that final decision!
Cori,
I am not familiar with the baclofen pump nor do I know anyone personally that has one. I found some mixed reviews on them in this link. I would be concerned about "who" does the surgery more so. I imagine you must have a trusted neurosurgeon already since you have spina bifida? I hope so. There are always risks...but if you've failed other means to relieve the pain then it would be an option for you. Be sure to call Medicare yourself to ask if it will be covered. Sometimes the doctors office can do that but I would also check myself to be sure.
http://www.everydayhealth.com/forum/other/does-anyone-use-a-baclofen-pump-if-so-any.html
http://www.neurosurgery.pitt.edu/pediatric/spasticity/baclofen_spasticity.html
Take care,
Allergic
I don’t know about trusting a sure thing. Please do a lot of research before you make a decision. Only you will know, but dang you have already been through so much. I just don’t want you to have another surgery if this isn’t going to cut your pain.
Good luck Corinne.
Dear Cori
I was just reading your profile information.......again because I recognize your face as a person I welcomed to this site. I don't know of anyone who has battled the odds and has proved the doctors wrong when they have kept telliing you Oh you'll never! You have defied the odds. How dare a doctor or anyone else tell you that it's not posible for you to be in so much pain!!! Only if they have lived in your body could they ever know the pain you suffer. Cori, with all the rods in your back and legs, no wonder you are in so much pain. In 2001 I broke my left ankle in three places, inner, outer and back. The surgery was perfectly done, but the doctor told me that I should expect arthritis to settle in there. Well it has arrived.
I am not addressing the pain pump because I know nothing about it nor do I know somebody who has used or is using one. Hopefully someone on this site or on the the arthritis site has some experience with it.
Oh my goodness to have been through all these many surgeries in your young life, you deserve a gold medal to have proved doctors wrong when they told you would never........or that you couldn't possibly be in that much pain. I'm thinking that you must have all kinds of scar tissue from all your surgeries.
Gentle hugs and admiration for you
Rachel
Hi Cori and welcome back! I don't know about the pump but I hope it's something you can use and benefit from. Your cause is especially dear to my heart because my mother's first child had spinal bifida. I'm root, root, rootin' for you, girl! But I think you're your own best rooting section, since you've already got yourself through 42 (!) surgeries. WoW!
I dearly hope that this pump is covered, that you can get it and that it helps to kick the azz outta your spinal pain.
Cheering you on from the bleachers,
Petunia
when i was in medicine, I had a patient with cerebral palsy and used a baclofen pump for the severe contractors of her arms and legs. I am sorry to say i have no other experience in this area
Hi Corinne, Wow !!! That’s a lot of surgery, my brother had a bilateral lung transplant 5 months ago, & is down because he thinks he should be better than he is, I know that’s different than spine surgery, but it was huge, I’m going to tell him about you, any surgery is hard on the body, you could verify that for sure, holy cow ! Back to the pump, I have seen many patients with that pump, it helps deliver the baclofen at a more therapeutic level into the body. Have you tried that drug before, for muscle spasms ? Most patients I have seen it in have MS, and I would say they had favorable results from it. I don’t think it’s a real hard thing to put in, you certainly could handle that ! Have you talked to your Dr.? Im not sure about your insurgence, but I can say most of the Patients Iv seen it in have Medicaid, so my guess would be its covered.
You should look into it for sure, my specialty is urology and endoscopy, I bet you have had your share of both, do you have a urinary catheter ? If you have any questions for me, I would be glad to help, BTW I have never heard a patient complain about there pump, but I do have a friend that has one, so I’m going to call her and ask how it helps & if she is glad she got it, I will let you know by this weekend.
Hugs & god bless
WOW … 42 surgery’s !!! You could write a book !
That is sweet of you dee. That is the kind of advice Corinne needs. Most of us can’t advise her. Great! We need an expert panel to submit ?s when we haven’t had personal experience amongst us. Thanks.
bump
I'm an RN, or was, but I never dealt with any pumps except insulin ones. I researched but I see that there are others responding who have a much better response to your questions. I hope they can find a way to let you be pain free with this pump. You have been through so much already.