Ongoing pain 5 years after decompression surgery

[April]

Hi Barb,

I understand completely what you are saying. It's always there and always lurking. My daily pain levels sound lower than yours (yes, mornings are almost always good!), but my flares are can be a problem. I think Violet's idea of a neuromodulation is worth considering. If my my flares more frequent, I think I would do that. (I strongly considered it before I decided to do surgery.) The stimulator has drawbacks, but it is a treatment that I've heard more consistently positive feedback about than most others. Glad the ice and heat are also helping you.

Take care,
April

[Pain_Darren]

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[stephanies]

I have had PN doctors and experienced PTs refute the idea that surgery is a "last resort". It is an option if evidence points toward entrapment. It is possible that you have some thing else going on that is continuing your pain. I always think lumbar and pelvic MRIs are a good idea to look for spine issues like Tarlov Cysts, annular tears, etc. and it is also important to have a doctor and PT check hips for any issues there that could be contributing to PN.

Stephanies

[barb21949]

Yes a part of why I am weary of any new pudendal treatments is because I do think something else is going on.

Plus many treatments I’ve read about state they are to be tried BEFORE you have surgery and since I had surgery does that mean these treatments are not worth it?

I have been of the frame of mind after trying so many different things before the surgery AND being told surgery was when all else fails (which at the time was true) that I just need to accept I am as good as I am going to get and I need to stop looking for some miracle “cure”.

I have had PN doctors and experienced PTs refute the idea that surgery is a "last resort". It is an option if evidence points toward entrapment. It is possible that you have some thing else going on that is continuing your pain. I always think lumbar and pelvic MRIs are a good idea to look for spine issues like Tarlov Cysts, annular tears, etc. and it is also important to have a doctor and PT check hips for any issues there that could be contributing to PN.

Stephanies

[barb21949]

My pain doctor brought up stimulators and Botox as possible treatments when other treatments weren’t working but ultimately she thought surgery was my best option. That was 5 years ago.

Please do serious research with stimulators
So so many horror stories
I would never go that route
Please be very aware of the dangers linked to stimulators
Darren

[barb21949]

Thank you April. My pain although can be very low some days is constant. And I have to be proactive to keep it low. It’s exhausting physically and mentally. I hate that it has been YEARS since I have woken up with zero pain.

My friends and family STILL
don’t understand what I am feeling and have said “but you had surgery, aren’t you better? “. Yes I’m better but I am not pain free. Even low pain on a daily basis sucks. It doesn’t make me weak and it doesn’t mean I am faking it or exaggerating. I still feel after all these years the need to defend myself.

Hi Barb,

I understand completely what you are saying. It's always there and always lurking. My daily pain levels sound lower than yours (yes, mornings are almost always good!), but my flares are can be a problem. I think Violet's idea of a neuromodulation is worth considering. If my my flares more frequent, I think I would do that. (I strongly considered it before I decided to do surgery.) The stimulator has drawbacks, but it is a treatment that I've heard more consistently positive feedback about than most others. Glad the ice and heat are also helping you.

Take care,
April

[Pain_Darren]

.

[Pain_Darren]

.

[jaxi123]

I agree Botox for me was a total waste and lots of money down the drain

[29Mari]

Hi Barb

....I also saw a pain management doctor recently who prescribed compounded low dose ketamine sublingual lozenges. These too work to some extent when I am in a bad flare. He also recommended I try ketamine infusions, which I guess are done in office via IV, as this would be a higher dose. If I try that I will post my experience here.

So these are some things that might be worth a try. It always helps to have some new tools in the box to help manage flares!

Best wishes, Mari

Hi Barb, I am circling back here because I said if I tried a ketamine infusion, which I did this past Monday, that I would post about it here. For now, I'll just sum it up by saying it was a really really scary experience. I am still recovering. This treatment is not for the faint of heart, literally nor figuratively. I don't recommend it. I very much regret doing it.

So as not to hijack your thread I will start another one at some point, when I am up to it, to explain how things went.