Surgery w Dr.Conway 1 week Post Op experience

[joeparz]

Hello Everyone,

It's been 1 week and i just wanted to update everyone on my status I also wanted to post my experience so people who are interested can maybe get some insight.

PROCEDURE EXPERIENCE/HOSPITAL STAY

I had the surgery a week ago and slept over the night before so i could get my blood work done.

I went in, got suited up for surgery and the nurse got me hooked up to the IV.

They gave me some meds to calm me down and they DEFINITELY helped.

I then had an epidural catheter placed. THIS DID NOT HURT. Please do not be afraid of this. They novacaine the site and then you feel just a slight weird pressure for like 2 seconds and it's over.

I said my goodbyes to my family and then they started wheeling me to the operating room.

As soon as we got into the hallway they must have given me the anasthesia because i was out cold and don't remember anything after leaving that room.

I woke up in just about 0 pain(i'm not kidding). The epidural was doing it's job very well and they even give you a controller so you can pump more fentanyl in if you need it.

I only pressed the button once and it was because the machine got messed up and the nurse needed me to press it.

They place these weird things on your ankles that constantly constrict every few seconds to make sure you don't a blood clot. It was oddly relaxing lol like a massage almost.

I stayed in the hospital for about 2 1/2 days and then i was released.

The worst part was laying in the hospital bed extremely bored the whole time and struggling with finding a comfortable position. Dr. Conway assured me i could lay on my back but i still felt hesitant to for some reason.


MY RESULTS

Dr. Conway had said i was entrapped in 3 places. My alcocks canal was extremely narrow and putting pressure on the nerve. I then had fibrous tissue that was tethering it to one of the walls or something i can't remember. And then finally my nerve was growing right THROUGH my sacrospinous ligament. He said the nerve was branched into 3 branches and one of the branches was growing through it.

POST OP

It's been about a week and i am in just about NO pain. I know that sounds crazy but i am on NO MEDS right now besides ibuprofen. I will get a shock now and then and of course the area is extremely tight with some pressure the first few days but nothing terrible at all.

I still can't sit yet and have some nerve symptoms thanks to just having to drive 60 minutes both ways for a stupid 5 minute followup. But that's to be expected after having the nerve tortured for a few hours. I won't be able to tell if it worked for 6-12 months but i am trying to be as optimistic as possible about this. I WAS entrapped so i am hoping that now that i am not entrapped my symptoms will go away. But you just never know.

QUESTIONS I HAD FOR CONWAY/WEIRD THINGS THAT HAPPENED

The first night i slept i had a wet dream for the first time in my entire life. It immediately made my symptoms worse for the day and i panicked. I asked dr. conway and he said that is totally normal and not to worry. His replacement Dr that i asked first actually said thats a good sign.

Second night home my cat decided to walk right across my butt.............. Conway also said not to worry at all about that

I asked about the car ride and he said that it would NOT be enough to cause any issues or ruin my recovery

HE DOES NOT USE HIS OLD POST OP PROTOCOL ANYMORE THAT IS ON THIS SITE. DO NOT FOLLOW THAT.

You can lay in any position that is comfortable and NOT causing any nerve pain. Surgical pain is okay though.

[nyt]

Glad to hear things are going well for you. Thank you for sharing your experience as it is always good for individuals considering surgery to hear someone's experience. Keep us posted on your recovery. I'm sure there will be some ups and downs (no pun intended ).

[Violet M]

Joe, you are lucky that you aren't having much post-op pain. I had a lot. Hopefully your recovery will be a breeze from here on out although don't be surprised if you have some increased pain as the nerve wakes up. This often happens around month 3-4 post-op so don't freak out if it does. Glad things are going well for you.

Violet

[April]

Wonderful news, Joe! So glad everything went so smoothly. Many thanks for the detailed report!

April

[bowhunt]

Joe:
I'm new here. If you don't mind I have a few questions for you. How did you exactly determine 1) what you had meaning diagnose, 2) How long have you had your condition, 3) How long of process to get to the point of surgery?
Thanks
Bowhunt (60 years old, robotic prostate surgery June 1, 2015)

[joeparz]

Bowhunt

This is a condition of exclusion. So first i had every test you can imagine done to rule everything out. Xrays,mri of back and pelvis, urinalysis, lyme test, ms mri, blood tests for every possible infection or condition, prostate ultrsasound, and many other tests.

The most important tests were the 3t mri of pelvis and the emg of the pudendal nerve. Those showed some minor scarring and delay of the pudendal nerve. With every test coming up negative i was pretty confident something was irritating or entrapping my nerve.

I have had this for probably around 5 years. All started as urinary symptoms which eventually led to numbness and pain after a few years.

For me surgery was a last resort. I tried everything else and had no quality of life. Couldnt sit at all and in constant pain. For me the risk was worth it. I still dont know if surgery worked yet but i am praying it did.

I still have to do PT as wellat the 2 month mark to relax my pelvic floor which is super tight and hopefully i will start to get better.

Will post more soon on my phone at the moment

[bowhunt]

Joe:
Mine came after prostate surgery...I'm soon at 8 months with "pelvic pain". Not sure what next would be except, willing to travel to see the best Dr I can find and "get into see". What I've completed to date: Blood test, PET scan, CT scans, pelvic, head, MRI, Cystoscopy, Colonoscopy, 2 Urologist, 1 Neuorsurgeon, 2 Radiologist. Having 4 nerve blocks (none did anything). 2 follow up PSA checks at 3 & 6 months, multiple Chiropractor tries, Physical Therapist trained in pelvic pain 3 sessions. So you can see, I've been chasing this as hard as I can. Limited to "when I can get it, slows the process". I'm looking for what's next & who should I go see? Any words of wisdom?
Thanks you

[Patty]

Hey Joe just checking in to see how you are doing?

[joeparz]

Hey Everyone,

I am 6 weeks out and it's been a roller coaster.

I can finally walk normal and i am almost to feeling like the way i did pre surgery.

I get really sore if i stand too long. I was up on my feet for like 5 hours the other day because we had family over. By the 5th hour my tailbone/nerve was burning.

I still cannot sit yet and laying on my back/side still hurts my sacrum/tailbone like before BUT there are weird moments for like 5-10 minutes sometimes where i can lay on my back or side with no pain.

My body is extremely tight and locked up from not moving so i am trying to call Conway to find out when i can start stretching and maybe do some pelvic floor PT.

But overall i only feel slightly worse than pre surgery at the moment and some days are better than others.

I am really hoping at the 5-6 month mark i will start seeing the positive effects of the surgery but it seems soooooo far away.

[Violet M]

Yes, it's a very long process, Joe. I still remember feeling like I was in a prison of pain for the first months after surgery but slowly over time it faded. There was never a time when I suddenly felt better. It was just slowly over time I started having more good days than bad days and the good days got better while the bad days became less intense.

I wasn't able to even think about PT, stretching, or exercise for many months after surgery. I think I started PT about 11 months post-op. If you go ahead with it, just be careful not to overdo things.

Violet