Hi Lindsay,
I noticed you were trying to reach me. I will Pm you my email address and phone number.
How are you doing with the treatment? I am praying all is going great for you.
Can' wait to hear.
Best regards,
KAthy
How to Send a PM
-
Robinest58
- Posts: 2
- Joined: Tue Jun 23, 2020 8:52 pm
Hi, I'm a 19yr Pudendal Neuralgia Sufferer at END of Thin Ro
Hi,
I've had Pudendal Neuralgia since 2001
When I woke up after a surgery my Oby Gyn did that I KNEW I was getting & found out a 2nd Dr. Put a Mesh Bladder/Sling in me w/o my knowledge.
I woke with immediate pelvic spasms like early-late labor pains 24/7 esp. If I SIT. + I leaked. NONE I had day before.
I griped Day 1. I'd had major surgeries before but none made me feel 1000%worse! I was 41 & had taught school many yrs until that 1day ended my Career & Changed my entire life.
I am putting a history of my surgeries & some treatments last 19yrs. Last count? 22? mostly for mesh. So if you just want to read list you can.
But if you want to know a recap of my experiences which perhaps will help someone else? Please bare with me & read on.
I know I write too long but yrs of being homebound 95% of the time before Covid 19 has made me reach out & want to explain,understand & most of all warn others.
I've read this forum for yrs & finally decided to reach out today. Because I am more than ready to try surgery. I sent Dr. Hibner my medical files & had hoped to go last summer.
BUT May 2019 My Interstem Batteries Died in my Interstem I'd had since 2012 when Dr. Raz put it in at Ucla. (About 8mo. After he removed all the Mesh Mess Poss from me & treated a Massive Infection-(he literally saved my life).
So I called Dr. Raz & told them my Interstem batteries died. He told me ANY Urologist should be able to replace them. +That he was soon retiring.
So we had my Urologist here replace them May 2-2019. But by May 31st? 2019? Despite the fact I'd seen him 5X after surgery? My incision still was not healing & was infected. I had a fever & he had us go to the Hospital Immediately where he removed the Entire Interstem & leads to my pelvic nerves.
(He recently gave me valium suppisitories I can take 1 of each night.) My reg.Dr. who has me on pain management would NOT prescribe them. They suggest no Valium with Pain Meds. But suppository Valiums only help my Spasm & do not make me drowsy.
I then had 3incisions to Heal. I was on Wound Care May-Oct.2019. So when Dr. Hibners office called me in June? I could not go out there. They said Dr. Hibner had read my files & would keep them & call me back this Spring. To make an appt. In Fall hopefully? I called them recently just to learn Dr. Hibner is NO longer there!
DOES anyone know where he is??? Does anyone have any knowledge or experience with Dr. CASTELLANOS? Who still is at Dignity & perhaps does Pudendal Nerve Surgeries?
I was called a few days ago & asked when I wanted to schedule to see Dr. CASTELLANOS?
But I told them I wanted him to personally go over the packet of files I sent that Dr. Hibner read. To see IF he can do a surgery to help me? + I want to get references if at all possible.
I did this for Dr. Raz before we ever spent money for my husband to drive me from Ok-Ca. No way I can sit & fly! ANY Info will be SO appreciated! Since all else has basically failed.
I'VE BEEN IN WORST PAIN EVER SINCE +AFTER NEW OKLA OPIOD LAW 2018? MY PAIN MEDS WERE CUT TO LESS THAN 1/2 STRENGTH I'D BEEN ON SINCE DR. RAZ PRESCRIBED THEM & SAID I HAD BEEN UNDER-MEDICATED.
I have 2sacks full of RXs meds & Natural Ones that did NOT help my pain & spasms. So I can look & see if I tried something a Dr. Suggests.
When I had my Interstem & adequate meds? I could go somewhere 1-2 times a week. If I planned & ride wasnt over 15min.I could eat at a closeby cafe with my husband.
Now? I only go to Dr.s Appts & suffer worse for days. Only time I have NO pain? In a swimming pool when at least waist deep. Dr.s say because no pressure on my nerves there. Whatever its helped me keep some sanity. It starts again minute I get out. But like hours in Heaven!
God Bless, RR
My Surgery History
1998 Total Hysterectomy & Rectocele Repair-(because of Adhemyosis)
2000-2-Discs fused in Neck with Titanium Plates. C5 & C6
2001-Right Hand Carpal Tunnel Release
2001-June-Cycstocele Repair & Bladder Tacked by my Urologist. +BARD PELVICOL MESH BLADDER/SLING & SCREWS & HARDWARE PUT IN MY PELVIC BONES. (W/O MY KNOWLEDGE) By an Urologist.
2001-RIGHT HAND CARPAL TUNNEL RELEASE
2001-December-Urologist who put Mesh Bladder Sling in did Lathrascopic Removal of "scar tissue" from Hysterectomy in hopes it would help Bladder Pain.(Despite it didn't cause problems before!)THIS DR.? ASKED MY HUSBAND IF I WANTED TO GET WELL? WHILE ROLLING ME INTO O.R. (My husband wanted to Deck Him One!)
2002-2nd Bladder Surgery by 2nd Opinion Gyno-Urologist who tried to "loosen" sling.(Dr.Raz later said it wasn't done in his surgery notes-2012.)
2002-Interstem Attempt by Gyno-Urologist.(But he couldn't get it attached to both sides)So He removed Interstem afterwards. He tried Trigger Point Shots Also No Help.
2011-Deviated Septum Nasal Surgery
2011-Another Dr. Did Pudendal Nerve Blocks 3times. It stopped pain 1hr each time. He said I had Pudendal Neuralgia & told me to go see Dr. Antolak. BUT when we asked him 'What about her Mesh Sling?" We were told it ALL disappeared! Lawyers just making it up. So we did NOT take his recommendation but instead found Dr. Raz who could remove Mesh. (I was starting to have a rusty dyscharge.)
2012-Oct.Dr.Raz Removal as much as possible of Pelvicol Mesh Bladder/Sling as possible+hardware+Treated Massive 12yr Infection+Cycstocele Repair.
2013-June-Installation of Interstem to 4different places on Bladder & Pelvic Nerves with 8leads total.For Trial.
2nd Surgery-July-Installation of Intersfem Permanently with Hand Held Control Unit to contril Impulses.
2015-April-Meniscus Repair of Right Knee.
2018-May 8th-Total Knee Replacement Right Knee.
2018-Sept.4th-Total Knee Replacement-Left Knee.
2019-May 2-Surgery to replace batteries in Interstem.
2019-May 31-Emergency Surgery to Remove Entire Interstem & Leads to Pelvic Nerves.
2019-November-General Anesthetic & Botox Shots put in Bladder by Urologist.(NO HELP)
2020-Feb.General Anesthetic & Trigger Point Shots in Pelvic Floor.(No Help)
I've had Pudendal Neuralgia since 2001
When I woke up after a surgery my Oby Gyn did that I KNEW I was getting & found out a 2nd Dr. Put a Mesh Bladder/Sling in me w/o my knowledge.
I woke with immediate pelvic spasms like early-late labor pains 24/7 esp. If I SIT. + I leaked. NONE I had day before.
I griped Day 1. I'd had major surgeries before but none made me feel 1000%worse! I was 41 & had taught school many yrs until that 1day ended my Career & Changed my entire life.
I am putting a history of my surgeries & some treatments last 19yrs. Last count? 22? mostly for mesh. So if you just want to read list you can.
But if you want to know a recap of my experiences which perhaps will help someone else? Please bare with me & read on.
I know I write too long but yrs of being homebound 95% of the time before Covid 19 has made me reach out & want to explain,understand & most of all warn others.
I've read this forum for yrs & finally decided to reach out today. Because I am more than ready to try surgery. I sent Dr. Hibner my medical files & had hoped to go last summer.
BUT May 2019 My Interstem Batteries Died in my Interstem I'd had since 2012 when Dr. Raz put it in at Ucla. (About 8mo. After he removed all the Mesh Mess Poss from me & treated a Massive Infection-(he literally saved my life).
So I called Dr. Raz & told them my Interstem batteries died. He told me ANY Urologist should be able to replace them. +That he was soon retiring.
So we had my Urologist here replace them May 2-2019. But by May 31st? 2019? Despite the fact I'd seen him 5X after surgery? My incision still was not healing & was infected. I had a fever & he had us go to the Hospital Immediately where he removed the Entire Interstem & leads to my pelvic nerves.
(He recently gave me valium suppisitories I can take 1 of each night.) My reg.Dr. who has me on pain management would NOT prescribe them. They suggest no Valium with Pain Meds. But suppository Valiums only help my Spasm & do not make me drowsy.
I then had 3incisions to Heal. I was on Wound Care May-Oct.2019. So when Dr. Hibners office called me in June? I could not go out there. They said Dr. Hibner had read my files & would keep them & call me back this Spring. To make an appt. In Fall hopefully? I called them recently just to learn Dr. Hibner is NO longer there!
DOES anyone know where he is??? Does anyone have any knowledge or experience with Dr. CASTELLANOS? Who still is at Dignity & perhaps does Pudendal Nerve Surgeries?
I was called a few days ago & asked when I wanted to schedule to see Dr. CASTELLANOS?
But I told them I wanted him to personally go over the packet of files I sent that Dr. Hibner read. To see IF he can do a surgery to help me? + I want to get references if at all possible.
I did this for Dr. Raz before we ever spent money for my husband to drive me from Ok-Ca. No way I can sit & fly! ANY Info will be SO appreciated! Since all else has basically failed.
I'VE BEEN IN WORST PAIN EVER SINCE +AFTER NEW OKLA OPIOD LAW 2018? MY PAIN MEDS WERE CUT TO LESS THAN 1/2 STRENGTH I'D BEEN ON SINCE DR. RAZ PRESCRIBED THEM & SAID I HAD BEEN UNDER-MEDICATED.
I have 2sacks full of RXs meds & Natural Ones that did NOT help my pain & spasms. So I can look & see if I tried something a Dr. Suggests.
When I had my Interstem & adequate meds? I could go somewhere 1-2 times a week. If I planned & ride wasnt over 15min.I could eat at a closeby cafe with my husband.
Now? I only go to Dr.s Appts & suffer worse for days. Only time I have NO pain? In a swimming pool when at least waist deep. Dr.s say because no pressure on my nerves there. Whatever its helped me keep some sanity. It starts again minute I get out. But like hours in Heaven!
God Bless, RR
My Surgery History
1998 Total Hysterectomy & Rectocele Repair-(because of Adhemyosis)
2000-2-Discs fused in Neck with Titanium Plates. C5 & C6
2001-Right Hand Carpal Tunnel Release
2001-June-Cycstocele Repair & Bladder Tacked by my Urologist. +BARD PELVICOL MESH BLADDER/SLING & SCREWS & HARDWARE PUT IN MY PELVIC BONES. (W/O MY KNOWLEDGE) By an Urologist.
2001-RIGHT HAND CARPAL TUNNEL RELEASE
2001-December-Urologist who put Mesh Bladder Sling in did Lathrascopic Removal of "scar tissue" from Hysterectomy in hopes it would help Bladder Pain.(Despite it didn't cause problems before!)THIS DR.? ASKED MY HUSBAND IF I WANTED TO GET WELL? WHILE ROLLING ME INTO O.R. (My husband wanted to Deck Him One!)
2002-2nd Bladder Surgery by 2nd Opinion Gyno-Urologist who tried to "loosen" sling.(Dr.Raz later said it wasn't done in his surgery notes-2012.)
2002-Interstem Attempt by Gyno-Urologist.(But he couldn't get it attached to both sides)So He removed Interstem afterwards. He tried Trigger Point Shots Also No Help.
2011-Deviated Septum Nasal Surgery
2011-Another Dr. Did Pudendal Nerve Blocks 3times. It stopped pain 1hr each time. He said I had Pudendal Neuralgia & told me to go see Dr. Antolak. BUT when we asked him 'What about her Mesh Sling?" We were told it ALL disappeared! Lawyers just making it up. So we did NOT take his recommendation but instead found Dr. Raz who could remove Mesh. (I was starting to have a rusty dyscharge.)
2012-Oct.Dr.Raz Removal as much as possible of Pelvicol Mesh Bladder/Sling as possible+hardware+Treated Massive 12yr Infection+Cycstocele Repair.
2013-June-Installation of Interstem to 4different places on Bladder & Pelvic Nerves with 8leads total.For Trial.
2nd Surgery-July-Installation of Intersfem Permanently with Hand Held Control Unit to contril Impulses.
2015-April-Meniscus Repair of Right Knee.
2018-May 8th-Total Knee Replacement Right Knee.
2018-Sept.4th-Total Knee Replacement-Left Knee.
2019-May 2-Surgery to replace batteries in Interstem.
2019-May 31-Emergency Surgery to Remove Entire Interstem & Leads to Pelvic Nerves.
2019-November-General Anesthetic & Botox Shots put in Bladder by Urologist.(NO HELP)
2020-Feb.General Anesthetic & Trigger Point Shots in Pelvic Floor.(No Help)