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Intrathecal pump sucess for ankylosing spondylitis

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Posted 4/3/2016 11:12 PM (GMT -5)
I suffered with sciatica for years when in 1998 i suffered from my first iritis. I was referred to a rheumatologist who found HLA-B27 and diagnosed me with undeferintiated sponylothropy , DDD, & fibromyalgia (when it was still a psychological issue) I was 27. female no family history. I was prescribed Enbral but had lymph node complications. In 2008 (after numerous attempts to control symptoms I was diagnosed with ankylosing spondylitis & went on SSDI. In the last 8 yrs I have tried everything that medicine has had to offer. I have herniated L5-S1 but not enough for surgery & no fusion. I've been seeing a PM for 6 yrs starting with the steriod injections til recently my 3rd radio frequency lumbar neuropathy was unsuccessful so my PM is suggesting an intrathecal morphine pump and stimulator nervo. Please Let me know if anyone has been through these therapies. I'm just getting scared the more I read on them.
Posted 4/4/2016 12:02 AM (GMT -5)
Hi Kimberleeann and Welcome to Healing Well Chronic Pain Forum! I was on pain medications for many many years and have had numerous epidural spinal injections! In June of 2014 I got the implanted pain pump and over all it has worked very well for me! I'm no longer taking any oral pain medications! The pump does not treat pain in all areas of one's body, but for me it does treat the worst areas! That is my lower back pain and sciatica pain! It does and absolute excellent job of controllingthis pain!

My pump constantly infused a minute amount of morphine into my lower spine. I also have a device that came with my pump and it's called a PTM , it is the size of a small flip style cell phone and I place the device on my abdomen right on top of my implanted pain pump and I press a button on it and it will cause my pain pump to infuse an extra preprogrammed bolus dose of morphine into my spine! My PM doctor programmed it so I can give myself up to ten bolus's in a 24 hour period. But they can't be given any sooner than two hours apart! If I try to give myself a bolus dose sooner than two hours it simply will not do it and let'sme know how long iI have to wait before I can do it! I rarely have to use this, but it is nice to have it for break through pain!

There are others here on the forum that have pain pumps and also spinal stimulators. I'm sure they will be here to help you too! I will tell you for me the pain pump has been a real Godsend! But that is something that you will have decide on for yourself! It is a big decision, and I do wish you well in making it! If I can be of any help to you just let me know!

Good luck to You! And again Welcome to the Forum!

White Beard
Posted 4/4/2016 12:18 AM (GMT -5)
Thank you so much for letting me know how this has helped you. I will keep in mind all the things that I read before making my decision. I do go in on this tues Apr. 5 2016 for my trial inj of morphine. I would really like to hear from people that are HLA-B27 +. Just for the fact that having that positive gene and a diagnosis of spondylitis which is an inflammatory disease will my body "attack" the pump? Also, curious do I or has anyone stayed on thier biologic medication to keep inflammation down and control symptoms that occur in other parts of the body?
Posted 4/4/2016 5:38 AM (GMT -5)
Welcome Kimber to the CP forum. We have multiple people here who have a pump and now that the weekend is over they will likely drop in and add their experiences to WB. I think you will find most are glad they made the choice especially in this new age battle against chronic pain and the medication used to treat it. It is some folks only option for treatment. As for your body attacking the implanted device and leads there could be a issue but its not very likely. Addressing the subject of your other meds yes most will be continued as the only things most Drs use in the pump is a pain med and some form of antispasmotic or muscle relaxer.

If you use the search feature at the top of this page and enter the criteria in this case the pump you will gain access to every post ever done here at HW about them.We ask that you don't reply on the older ones since it brings it forward to the current date and many of the original posters are nolonger here. If you have a question you can come back here and post and we will try to answer it.
Posted 4/4/2016 8:04 AM (GMT -5)
Hello & welcome to Healing Well. Like WhiteBeard, I too have an implanted pump. However, if you are wanting to hear from people that have AS & have a pump I don't think you will find them here. I have been around HW a very long time, most people that have pain pumps have back pain, a few had neck pain. I do not know of anyone that has a pump as a result of AS. One thing you can do is go to www.Medtronics.com & read up on the conditions a pump is often used for. They are the leading makers of pumps & have a great user friendly website that is very informative.

If I read your post correctly your dr is recommending both a pain pump & an SCS unit? All I will say is do your homework on both of these devices. Good luck.
Posted 4/4/2016 8:34 AM (GMT -5)
Thank you Sue, so much for the information. I will check out Medtronics website. I cant say for sure what is the actual cause for my pain, I'm just assuming since cortisone, steroid injections and radio frequency have failed this last time. I did get 8 yrs relief from those procedures. My PM did an MRI and I only have minor herniation in L5-S1. I also want to get my rhuematologist opinion and advice. I've never used any type of forum or boards and this has been so helpful to me. If I find out anything helpful for others I will let you know.
Posted 4/4/2016 9:17 AM (GMT -5)
You may want to use our search feature above & read up on the members that have AS. I know there are several from the crohns forum with AS. Those people are being treated with medication. What medications has your dr tried you on? I will be honest I have not heard of anyone having an SCS unit or a pump because of AS. At least, I have not heard of anyone coming through here that had their AS treated in that manner. There is a lot of info archived here about AS. When reading those older threads we do ask that you not post on them. There is a good chance the person is no longer active here at Healing Well. You will see what forum that member belonged to & could pose questions in that particular forum. Little food for thought.
Posted 4/4/2016 9:57 AM (GMT -5)
Thank you again, you have been so helpful again.
Posted 4/5/2016 11:46 PM (GMT -5)
Hi there, I have AS, and my doctor recommended me for a pain pump several years ago due to the fact I cannot tolerate high quantities of opioids. I did a trial, and we tried three meds in it, and I had horrible reactions to all of them.

So no pump for me. But I do know that the few hours I was on morphine through the pump, during the trial, the pain relief was incredible! I wish I could have had it work for me.

Best wishes to you!
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