Sorry I can't offer any input on your surgery. I hope everything goes well for you and that you get the relief you are seeking. Good luck Kelley

I am still healing from the procedure, but so far, there have been some HUGE improvements.

One of my frequent battles is I have an Italian Greyhound that I love dearly. she always wants to lay in my lap and she works her way against my stomach and she often does that after I have fallen asleep and I don't realize it (I sleep in a recliner). After about 20 mins I am in crippling pain.

I woke up in that position and was feeling so good, I went back to sleep and let her sleep ON my stomach for two hours and ended up with ZERO pain. That blew my mind.

There have been lots of other little things. I have had little pains too, but I can't say that they aren't from the procedure or from some diverticulitis I may have going on.

Tonight I am going to try to sleep on my back which is something I haven't been able to do in a long time. Fingers crossed! I would Love to sleep next to my wife again. :)

I can't wait for a few days to pass and the healing to complete from the procedure. It may be life changing for me! I am so excited!!!

BTW, the way I found out about this procedure was by throwing a hissy fit and telling a certain doctor (not nephrologist) that I was unhappy, he was working to slow, he was not creative enough.

I told him to completely start over.

* here is my problem:
* here are the unacceptable symptoms caused by the treatment of my problem (sedation really):
* solve my problem without the symptoms

Then he put on his thinking cap and started getting creative.

I've been sleeping in a recliner for over a year. Setting upright in a chair is painful and laying flat is painful. Every once in a great while, I can't get comfortable in my recliner and I will sleep in my bed. I usually wake up in 8/10 pain.

Last night, i slept in my bed. This morning i woke up with 0/10 pain. Although now that I've been up and moving around a while, I'm at 1/10 (could be my back though).

Why on earth does no one know about this procedure?

Larry

So happy for you that you are pain free! It must be a great feeling. I live in Canada and there seems to be hesitation over any kind of surgery for pain relief here.

I have heard of the sugery that you had done. One of the drawbacks to it is that if you end up with a severe infection you may not catch it as quickly due to not feeling pain in the area. At least that is what I had read.

I would love to be pain free for even a day. It seems to have lasted forever now. I think it's been 8 years now. I take pain meds but they really only take an edge off. My neph calls my kidneys the twins due to how large they've grown.

I hope this surgery is a good long term solution for you. Enjoy your pain free moments :) Hugs Kelley

I have had chronic kidney infections for years. Blech.

So I am accustomed to watching for the symptoms.

I take my BP and temp and chart them all the time.

Sadly my block began to fail on day 6.

I'm told a more permanent option is radio ablation.

I think I have to do another block first.

Sorry to hear your relief was short lived but I bet it was great to get a break for awhile. Hopefully you will have better luck with your next procedure. Take care Kelley

Please keep us updated. I tried to look this up and don't understand the procedure, can you explain?
I'm very sad it stopped working for you as I know how difficult financially and mentally it is being off work.

Sorry I took so long to reply.

There isn't very much information out there about it.

From a patient perspective, it's quite simple. The procedure takes about 10 mins. There are two Splanchnic nerves that come off the spine then run to the kidneys. I'm not sure what all they do. But two things I know they do are relay pain and are one of the ways your body regulates blood pressure.

You lay on your stomach. You get a shot to numb one wide of your back where the needle will be going in. The needle goes in. The doctor uses x-ray to make sure he has it in the right spot vertically, then they move the x-ray machine and make sure the needle is in the right place horizontally then several drugs (the block) are administered. It is uncomfortable. But within hours, I was at ZERO kidney pain!!!! Then they repeat for the other side of the back.

One you are in the procedure room and they start, it is literally 10 mins. Recovery taks less than 30 mins.

My block may be failing again. I am 9 days into this one and have even returned to work after being off for 6 months! If it is, I am considering having radio ablation done this time. It is a similar procedure except instead of inserting chemicals to block the pain, they put in a needle that has a radio tip that damages (roughes up) the nerve.

50% of the people never have the neve heal. The other 50% heal within 3 to 12 months with 6 to 9 being the average.

I still need to do some research.

You are certainly very proactive. I looked into having surgery for pain relief at one time. All I really got for my trouble was an unpleasant lecture from a urologist who felt the need to tear apart whatever information I had about polycystic kidney disease.

I hope you have more success with the radio ablation. Let us know how things go. Take care Kelley

Than you, will do. Sadly, I really feel we are mostly on our own for pain therapy innovation...

I don't like that.

I'm still frustrated that VSPL is performed every day for people with chronic uncontrolled high blood pressure, but we can have it because it is recognized as an experimental treatment for us.

The reality is it may not work for every one (so far in the Mayo trial I believe it has), but you can get the same simple block I got to see if blocking that nerve will block your pain. If so, the removing a segment of that nerve permanently should do the same.

I was really pleased to see one of our member get into a bone marrow trial before/after transplant that allowed her to either greatly reduce or eliminate the anti rejection drugs! That sounded awesome!

I talked to my doctor about it (who I really don't know if he knows anything about it or nor) and he really has me spooked about even considering it. :(

It was certainly very successful for Alinds. Maybe if you contacted her you could find out more about where the procedure was done. She was the first person to have it so I'm not surprised your doctor wasn't familar with it.