I haven’t been here in a while and it is so different! I hope I’m posting I’m the right spot.
I have a surgery set for next month for my neurosurgeon to put a pain pump in my abdomen with the tube going in through a tiny hole in the top of my head and going straight to the T nerve cluster.
Has anyone here even heard of this surgery? He has done it before, so at least I’m not the first, but I’m still wondering just how new it is. I think other surgeons in San Francisco have done it, too.
He says it will be my best best for the most pain relief.
I had two MVD surgeries and I think I’m more nervous about this one than I was of those. I still have very little hearing out of my left ear because of the first surgery. At least this doctor is highly regarded and considered the best in this area.
Anyway, any thoughts on this would be greatly appreciated. I’m going to do the surgery, so anything that will ease my anxiety would be wonderful. And if this is in the wrong places, please let me know!
I’ve had one for the past 15 years. I’m actually on my second pump. It hold a mixture of morphine and Baclofen. It’s been a huge help. I’ve heard a lot of people say that narcotic medications don’t work, but it’s been my experience that my pump has been helpful. It takes the edge off of the pain, especially when I’m having a major flare up of my pain. I still take other oral meds too. Trileptal, Baclofen, Elavil, and occasionally I take other oral pain meds. I was told before I had the surgery that your pump and you are like a marriage. It needs regular attention (pump fills, or refills) and fine tuning the strength that works for you. I’m glad that I have it and I only wish I could get all of my medications to be stored in it. Best of luck on your surgery. The recovery is actually pretty easy.
I’m so glad to hear that! Does your pump tube go into your brain, right to the trigeminal nerve cluster?
I’m really hoping to be able to cut down or stop my carbamazepine medicine. It has made be so dopey, but the pain is too much without it. I’ll make sure to ask if they can put it in the pump! They only mentioned putting morphine in it.
I’m so happy to hear that it helps you. I’m trying to not get my hopes up. Part of me is hoping it will take all my pain away. Wouldn’t that be great?!
I have not heard of this surgery but am anxious to hear of the results. I wish you a complete and uncomplicated recovery.
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 have been thinking of you and wondering if you have had the pump put in it? Fingers crossed you are pain free.
Hi Patt, I have a surgery appointment for the 19th of this month. I’m still waiting for my new insurance to approve it, so I’m trying to not get too excited, but it’s hard!
I guess the surgeons had time off for Thanksgiving and Christmas, so I’ve been waiting longer than they thought I would. Don’t those surgeons know what it’s like to wait for this? Really, I’m thankful my surgeon is still there. He tried to retire last year, but came back because the hospital needed him.
My pain doctors tell me the pump will be set to deliver medicine throughout the day, but that I will have a button I can push for extra when the pain is worse. It will take some time to figure out how much to have it give me. Once it is all set I will only need to see the pain doctors a couple times a year. After seeing them every month for so long I am looking forward to that!
I will definitely write here once thinks settle from the surgery and I know how it’s going. Thank you so much for thinking of me!
I hope you are doing well and your surgery was successful!I hope you are doing well and your surgery was successful!
Thanks 
The surgery went really good in October, but they ended up only doing half of it to test if it was going to work. So they put a tube into my brain with some reservoir between my skull and brain. They injected a morphine mixture into the reservoir and all my pain was gone. Poof! I wasn’t having the worst of my pain, so I imagine i might still hurt sometimes, but I was very excited! They didn’t get me scheduled for the rest of the surgery until January, then there was a problem with insurance. I’m still waiting for a new date and expect to hear from them any day. While I’m waiting I’m back to oral medications. I tried talking them into sending me home with the morphine and syringe, but they really didn’t think that was a good idea, lol.
I’ll check back in here once I have the pump put in. I have a huge bump on my head from the reservoir and I’m wondering if it will be there after they connect the pump’s catheter to the part in my brain.
I finally have the second part of my surgery tomorrow. It feels like I’ve been waiting forever for this!
I will most definitely post here about how it goes. My doctors say it is “cutting edge” treatment. I hope that if it help me it can help a lot of other people that are hurting.
The surgery went really well. It helps the aching pain the most and it really does help that. I’m still lowering medications and I’m sure it will take some time to tweak everything to be optimal, but I’m very happy I had it done. I already feel like I’m thinking more clearly and that was very important to me. I want to start driving again! I stopped driving about 4 years ago because I knew my mind was just not as sharp as it needed to be.
I see my surgeon on Thursday and I’ll ask him what the exact name of this procedure is. I’m not sure if any other surgeon has done this surgery, but hopefully some will start learning how.