Need help with medications

[Laramarie]

I am 4.5 months post op (TG Dr Hibner). The past month I have been having an increase in pain and unable to tolerate most meds. Right now I am on Fentanyl 12, down from 50 due to side effects, and Tramadol for breakthrough. In the past I have tried cymbalta, Lyrica, GABA, hydromorph contin and elavil but had to discontinue due to unpleasant side effects. I went to see my pain management doctor last week and he prescribed Topamax combined with a low dose of Lyrica. I am feeling very nauseous and dizzy with combination. I am wondering what others have taken post op for the burning stabbing pain? I am booked for an ultrasound guided perineal nerve block next week. Really getting desperate...... Thinking of not continuing with these meds tonight? Can anyone offer any advise? Also prescribed a ketamine and lidocaine cream that is not helping with the burning.

Thank you and any help appreciated!

[blightcp]

I have used lidoderm patches but i am assuming your ketaimne ointment already has a local anesthetic in it.

When I had my second surgery, a TG by Dr. Conway, a week later my testicles were on fire all of the time. It did get better over time, and reduced to a specific spot on the scrotum.

I found that a tens unit on either side of S2, an inch or two above and 2 inches to either side of the butt crack helped, when it was really bad.

It has been 23 months after surgery and the pain is at least better than what it was before. I don't need to use the TENS anymore as it is not as effective as it was before.

Take Care

[Laramarie]

Thank you for your reply! Yes the ketamine cream does have xylocaine in it and I think it is starting to help a little now that I am using more of it and more frequently. I actually stopped the new meds that were prescribed but I saw my physician today and she told me to start back on the Topamax but gave me a different schedule to take the meds. So tonight I will try again..... She said it will take 4 weeks to get over the side effects and see a benefit to the nerve pain.
How long does the burning, stabbing pain continue? It's really strange that I wake up in the night and have no pain at all! I push in all my painful post op areas and feel completely normal. (Except in the incision line), this is still very sensitive. Did anyone else experience this postop?

I have never tried the TENS unit.... It was never offered to me ? Maybe this is something I should investigate......

Take care

[Violet M]

Laramarie, the first months post-op can be pretty rough due to burning/stabbing pain. I remember it took until about the 9th month before I started cutting back on meds and 18th month before I could count on a decent day. Nothing took the pain away completely, not even during the night for me, so I'm not the best at recommending meds but what really helped more than anything when I thought I would go insane was alternating warm/cold sitz baths. Also used a lot of ice packs and ice balloons inserted vaginally up against the ischial spine. One med I didn't see on your list of things you've tried is clonazepam. It might help with the shooting pain and was one of the best meds for helping me get to sleep. Good luck. Hope you find something that works for you.

Best,

Violet

[Laramarie]

Hi Violet
Thank you for your reply! I have been reading about you on your posts for a few years now but haven't had to chance to actually chat with you. I am glad to hear that I my burning stabbing pain is not unusual for 4 months post op. I think the numbness is ever so slightly resolving but I have one area that is still pretty bad. My husband did a "Q tip" test on me today and that one area felt like he was stabbing me with a pin! So I am going to be keeping a diagram of exactly where the pain is. I am supposed to be having a perineal nerve block soon but think I will wait a few weeks to see if I get any relief from the new meds. I have to fly from Canada back to Phoenix for this and I really don't want to sit for that flight again.....
My PM doc never mentioned using clonazepam. As for the ice packs etc, I have never tried them! I always felt more comfortable using a warm pack but I think I may have to give ice balloons a try..... I have been having pain for almost 3 years now so I guess it doesn't hurt to try new things.

Thank you again Violet! Much appreciated.

Lara

[Positivepoppy]

Hi
I also get relief from a heated wheat bag but a few people on the forum have suggested that prolonged heat can aggravate the nerves so I've been alternating now with 20 mins heated bag then 20 mins soft ice bag, always finishing with ice to help reduce any inflammation. I've been doing this for past week and it has helped to ease theses nightly flare ups I seem to be experiencing.
Hope your recovery is going well like yourself I am approx 3 plus months post surgery.
Take care

[Violet M]

Lara, if the ketamine/lidocaine cream isn't providing significant relief and it's expensive, you might want to try just plain old over-the-counter extra-strength vagisil that contains 20% benzocaine. I get the Walmart equate brand that is much cheaper. Anyway, for topicals it works as well as anything I've tried if your burning pain is on the surface. Can't say it helped much when the pain was deep and widespread but as things subsided a bit it was helpful.
OK, hope this isn't too much info but here's what worked for me. Regarding the ice balloons inserted vaginally, I like the 7 inch round the best. When you fill them with water and tie them off to freeze them, they are not 7 inches round! They can be pretty intense when first inserted so you may have to slide them in and out a bit until you adjust to the coldness but once you get past that initial shock they can really help. Some people prefer to mix rubbing alcohol with the water so they are a little less intensely cold and more flexible. Or you can fill them with ultrasound gel if you can get some.

Another thing that works well are the ace brand cold compresses that are in the shape of a sanitary pad. They are reusable and if you put them between 2 pairs of underwear you can wear them around the house while doing things. http://www.acebrand.com/wps/portal/3M/e ... 516&rt=rud
http://www.amazon.com/ACE-Reusable-Cold ... B001AM20RS
I can't remember if I have the large or the small -- maybe you can find out the measurement by calling the company.

Oh well, hope the guys aren't reading this. Can't believe we discuss such things on the internet but hopefully some of these little tricks will help a bit.

Best,

Violet

[blightcp]

Ok I guess there is a reason i did not know vagisil was 20% benzocaine

But now that I know, its cheaper than then Lidocane jelly lubricants that I use topically when needed.

[Laramarie]

Thank you Violet for the reply..... I don't mind "TMI", that is how I learned so much on this forum. I sometimes think I should PM people when I want to talk about our "private" areas but these topics actually help us PN'ers get through the most difficult times in our lives. Who else can help us with this stuff? Nobody! And I want to truly thank you for that. I am going to try the balloon suppositories this weekend. Take care.....

Lara

[Violet M]

OK,for guys reading this they can try premjact spray. 9.6% lidocaine desensitizing spray.

Lara, I've learned a lot of stuff from other people on the forum over the years. I knew NOTHING about PNE when I first came on the forums even though I'm a nurse. Glad it helps to be passing it on.

Violet