I’m hoping this works. I posted in a category that I’m thinking maybe isn’t looked at a lot. Because of course someone would have commented if they saw it.
I think this link up there goes to my post, I hope! I’m not used to this new format! I hope I’m not clogging up the boards with my topic going on twice. If I’m doing something wrong, please let me know, kindly. I might cry if someone is mean to me. Yikes, I’m getting teary just thinking about someone being mean! I’m so ready for this all to be done.
I’m sure others have seen it, but that sounds like a really new and unusual type of procedure (I’ve never heard of it!). So I think most are uncomfortable commenting on something that they have no familiarity with. Have you tried doing some searches on the web for more information regarding this?
I’ve never heard of anything like you’re describing. I agree with ziggy, do your research online and see what you come up with – hopefully medical studies and whatnot.
I, personally, think any surgery is very, very scary and should be undertaken with extreme caution.
When I search for it, all the results are for the normal pain pumps, which have been used for back pain for quite some time.
The first time my doctor mentioned the pump they said the surgeon would put it in the upper cervical area of my spine. To get it closer to the nerve. Fast forward a couple years and my current surgeon says he is going to put it right into my brain.
I really wish someone had information or at least heard about it. Maybe I will ask the doctor where I can find info. The pump is made by Medtronic and they have info about the pump itself. It delivers a small amount of medicine straight to the area. Since it doesn’t travel through your whole body a lot less medicine is needed.
I really hope it makes things better. I haven’t driven in four years because of medication side effects. I’m so ready to feel better!!
If it works I will be sure to let you guys know. My surgeon is considered the best in my area for TN, so at least I know he’s not a whack job.
Anyway, thank you for the responses. I’ll keep looking for information about it.
Thank you for the response. I do have a Medtronic nerve stimulator that goes across my jaw and cheek. I have really been impressed with the company. My husband and son also have Medtronic defibrillators and they have been wonderful.
I talked to my Medtronic rep and asked where I can read about it. She said I am having a “cutting edge” implant and most likely won’t read about it anywhere. It is the same pump they use for back pain, only this one will have a tiny tube going into my brain.
I think I might be a guinea pig. At least I’m not the first one. The surgeon has done a few of these procedures before. My rep says she has attended a handful of the surgeries.
If it works as well as they expect it to, I would hope this could help others who have tried everything and the pain won’t stop. I will certainly let you guys know.
The stimulator I have does help some, just not enough.
I think maybe the reason you didn’t get a response is that none of us have ever heard of this. I would definitely get a second opinion and/or try to do a medical search such as those at the National Institutes of Health: https://www.nih.gov/health-information
Ask how many he has attempted (like yours) and how many were successful. Ask if they can get permission for you to talk to one of the people for whom this was successful.
I think I managed to start this topic in two places, so I’ll give the same update here that I gave on the other spot.
They did an ommaya reservoir to test out if putting medicine, a morphine cocktail, into my brain would help. It really did!! After they gave me a shot on the top of my head, into the reservoir which had a tube going into my brain, all my pain went away. I’m sure they were using a large dose to see how I would do with it and how long it would give me relief. My oxygen level did drop a bit, so they will take that into consideration when figuring out my pump dose.
Overall, I am very excited and anxious to get the pump put in, hopefully next month.
I am going to ask more info from the surgeon. I would love to talk with someone else he did this for! The nurses at the hospital had not heard of this before. They were looking it up and said my surgeon was assisted by the surgeon who published papers about this treatment/surgery. When I looked up the ommaya reservoir I found some info about that alone being used for pain medicine delivery. It is mainly used for cancer related treatments, I think. I’m just guessing, but it seems like they’ve figured out a way to hook the pump up to the catheter, so that the reservoir will no longer be necessary.
Right now, this is the most hope I’ve felt in a long time. I’ll update here as I find out more info.
I wonder if the surgeon(or hospital) could ask some of the people who have had the pump to contact you?Highly unusual ,but you will be getting into something that you cannot research on your own.
Sounds exciting.
And hopeful.
