I originally had a nerve decimoression surgery of a left gastric pelvic nerve in June 2018 which was immediatel successful. However unfortunately, about five days later I felt an excruciating stabbing pain in my "cervix". I put that in quotations because I had TAH W/ ovaries in 6/ 2017 which is how I got the entrapment in the first place.
Dr. Castellanos immediately diagnosed this pain as some sort of residual spasms in the vagina from all the trauma my pelvic area had been through in the previous year ( I had also had an exploratory lap prior to seeing him) and he said that itvwould take various methodologies and time to treat it. I am not a doctor but I took this information with a grain of salt.
To date, I have been through:
B/ O suppositories ( didn't work), internal pelvic PT with a therapist in Phoenix who didn't know what she was doing ( I also had to give up b/c I couldn't cope with the 4 hr round trip), 4 mos of External PT where I learned useful Diaphramatic breathing and TONS OF MEDS including a select amountof narcotic medication.
I did one Botox treatment with Dr. C, but gained nothing.
Being very frustrated, my External PT recommended Warm Water PT which believe it or not has been life-saving. I take it at the Y, and although I am the youngest under 70, I don't care because I was able tocut my opiate use by half. Success!
However, my primary doctor was far from satisfied, and as many doctors these days are alarmed with the growing Opiate concern, pushed me to return to Dr.C fir another round of Botox. My Pain Doctor to giver her credit, was not in agreement, because she had seen me through all my trials.
Well, I never should have gone. First, the pre-op nurse all but broke her professional confidence to give me a "side warning" about Dr. Castellanos that I will not repeat here. Second, immediatel upon awakening in Recovery, unlike my other two experiences where I had the blessed relief of the lidocaine device I was instead in pain.
Third, upon discharge and shortly while on our way, I commented to my husband that I felt wet and I discovered the nastiest surprise- I had defecated on myself.Fortunately, this side effect only lasted 24 hrs, but I soon realized I was in the small category of patients that had a negative reaction to Botox. Whereas prior to the procedure my pain would get no worse than a 5/ 6 it now would get to a 7/8.
I was devastated. And furious.
This may sound strange to all but I did not soon return to see Dr. C because I have two special needs sons and my youngest was soon hospitalized after that and that was entirely where my heart was. It was an extremely difficult time. Plus I knew that Dr. C had told me that I had already done all that he could to help me.
Fast forward to a few weeks ago and I had begged my local pain doc to find another Internal Pelvic PT, and amazingly she found a very good one right here in town! But this is where I need all of your help. First she did tried internal ( the left side is definitely more tight and painful) and then gently massaged my back for a few minutes because it was sore. OMG it was a 10! So the next time she did extermal work myofascial massage from the pelvis going down to the perineum. Ok, please, I swear I'm not dramatic BUT THIS IS THE WORST PAIN I'VE BEEN IN MY LIFE!!! IS 12 POSSIBLEI just went back to her and cried and cried and cried- you see I' m NOT a passive patiient- I've been diligently practicing my PT exercises all these months. I DID restart my aquatic therapy and my breathing. And I did call Dr. C's office and I all they would say over the phone is that they wouldn't risk another Botox on me. *Obviously*. They said I could make an appt, but honestly, I don't have it in me to make the drive down and I'm not sure I respect his integrity at this point.
Here are my questions:
I read some other posts here about how massage tecniques can hurt when nerves are entrapped in the muscles. Do any of you think Dr. C was being disgenuine with me about the cause of my new pain after my decompression surgery?
Do you think it's time I consult another practice for a Second opinion and if so where? I know Hibner is one of the best, but I'm not sure he would speak out of turn about a colleague.
Thank you for reading this.