Karyn's surgery

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judys
Posts: 29
Joined: Thu Feb 24, 2011 10:01 pm
Location: South Florida

Karyn's surgery

Post by judys »

Karyn I am thinking of you and your surgery the 29th. I don't remember if Dr. Conway is doing the TG surgery. I had a phone conversation with him when he returned from vacation and he definately thinks I should try PT. I have found a group of females in Orlando specializing in pelvic floor issues and also pudendal issues. I pray I can get the tinest of relief. My surgery was sceduled for the 31st. and I cancelled. Prayers to you and please keep us posted as to your recovery. Judy
Symptoms came on so slowly they were hard to explain to anyone much less myself. Discomfort sitting one day and not the next. Foreign object feeling in various private parts. Doctor to doctor. Mis- diagnosed many times. Un-needed surgery, depression pills and finally a diagnosis of PN. EMG testing in NH. Unsuccessful nerve blocks. Will start PT in a few weeks. Finally I don't think I'm crazy!!!
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KC17
Posts: 96
Joined: Fri Sep 17, 2010 2:07 pm
Location: Orlando, FL

Re: Karyn's surgery

Post by KC17 »

Judy,

If you don't mind me asking, who in Orlando are you going to see? I ask because I live in Orlando and I had my first PT session today with a lady at Florida Hospital Sports Medicine and Rehabilitation's: Pelvic Rehabilitation Center for Women & Men at the RDV Sportsplex.

She was knowledgeable of PN and nice.

Regards,

Krista
Pain started suddenly April 2010.
3T MRI w/ Dr. Potter, January 2011 shows bilateral impingement of the dorsal nerve of the clitoris.

Unsure what to do next because my pelvis is a mess.
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Lernica
Posts: 960
Joined: Fri Jan 14, 2011 10:31 pm

Re: Karyn's surgery

Post by Lernica »

Hear hear! Wishing you the best of luck, Karyn! Hope you're holding up okay.


Lernica
Athlete until pain started in 2001. Diagnosed with PN in Nov. 2010. Probable cause: 3 difficult labors, 5 pelvic surgeries for endometriosis, and undiagnosed hip injuries. 60% better after 3 rounds of shockwave therapy in Cornwall, Ontario (Dec - Feb/12). 99% better after bilateral hip scopes for FAI and labral tears (April and July/12). Pelvic pain life coach Lorraine Faendrich helped me overcome the mind/body connection to chronic pain: http://www.radiantlifedesign.com
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HerMajesty
Posts: 1134
Joined: Sat Sep 18, 2010 12:41 am
Location: North Las Vegas, Nevada

Re: Karyn's surgery

Post by HerMajesty »

We love you Karyn! :mrgreen:
pelvic pain started 1985 age 14 interstitial cystitis. Refused medical care from age 17, did GREAT with self care for years.
2004 PN started gradually, disabled by 2009. Underlying cause SIJD & Tarlov cysts
improved with PT & meds: neurontin, valium, nortriptyline, propanolol. (off nortriptyline & propanolol now, yay!)
Tarlov cyst surgery with Dr. Frank Feigenbaum March 20, 2012.
Results have been excellent so far; but I won't know my final functional level for a couple of years.
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GraceUnderFire
Posts: 115
Joined: Fri Sep 17, 2010 1:57 pm

Re: Karyn's surgery

Post by GraceUnderFire »

Lots of prayers for success :)
Woke screaming from ab hyst 6/08
Diagnosed w/PN, ilioinguinal & iliohypogastric neuralgias 1/09
3 PN blocks w/Dr Quesada
Rt side TIR, ilioinguinal neurectomy & vestibulectomy 5/09 Dr Conway
Left side TIR 2/10 Dr Conway
Potter MRI 9/10 and consultation w/Loretta & Dr Hibner 12/10
Bilateral ilioinguinal, iliohypogastric, genitofemoral release w/Dr. Hashemi Aug 2011 left & Sept rt
Bilateral TG surgery w/Dr. Conway will be in January 2012
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donstore
Posts: 463
Joined: Mon Nov 08, 2010 6:13 am
Location: San Francisco

Re: Karyn's surgery

Post by donstore »

Wishing you all the best as well Karen.
Mild to moderate PN for 5 plus years, pain controlled by lyrica and opiates.
Nerve block (unguided) 9/10 Dr. Jerome Weiss - sciatica for 5 months but got numb in painful perineal/scrotal area - he diagnosed entrapment - but no more cortisone for me
Potter MRI 5/11 - rt STL entrapment of PN at Alcocks
Consult with Dr. Hibner Feb. 2012
Bilateral inguinal hernias diagnosed by dynamic ultrasound - surgery on 6/20/13
Feeling a little better, a few more months will tell
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Karyn
Posts: 1655
Joined: Fri Sep 17, 2010 12:59 pm
Location: Lowell, MA

Re: Karyn's surgery

Post by Karyn »

Thank you all very much! I'm very excited to get this over with. And yes, I'm having the TG approach with Dr. Conway. I'll be sure to let you know how it goes.
Have you begun PT yet, Judy? It is my hope that you'll stay with us and let us know how you're doing. I think you made the right decision to postpone surgery, and am soooo happy that you found someone who specializes in pelvic floor disorders in your area!
With love,
Karyn
Ultra Sound in 03/08 showed severely retroverted, detaching uterus with mulitple fibroids and ovarian cysts.
Pressure and pain in lower abdomen and groin area was unspeakable and devastating.
Total lap hysterectomy in 06/08, but damage was already done.
EMG testing in NH in 04/10 - bilateral PN and Ilioinguals
3T MRI at HSS, NY in 09/10
Bilateral TG surgery with Dr. Conway on 03/29/11. Bilat ilioinguinal & iliohypogastric neurectomy 03/12. TCD surgery 04/14.
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judys
Posts: 29
Joined: Thu Feb 24, 2011 10:01 pm
Location: South Florida

Re: Karyn's surgery

Post by judys »

Karen I start PT in Orlando the week of 4/18. I will stay in the area Mon thru Fri and will have PT everyday. I return home and go back 2 weeks later for the same. I don't know after that. I was told there are several PTs very knowledgable in PN issues. I can only hope. It's funny you are a stranger and I have been thinking of you everyday. Maybe because I was to have the same procedure by Dr Conway. I will stay in touch you do the same. All the best. Judy
Symptoms came on so slowly they were hard to explain to anyone much less myself. Discomfort sitting one day and not the next. Foreign object feeling in various private parts. Doctor to doctor. Mis- diagnosed many times. Un-needed surgery, depression pills and finally a diagnosis of PN. EMG testing in NH. Unsuccessful nerve blocks. Will start PT in a few weeks. Finally I don't think I'm crazy!!!
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User avatar
Charlie
Posts: 214
Joined: Fri Sep 17, 2010 11:48 pm

Re: Karyn's surgery

Post by Charlie »

Good luck Karyn
Tried numerous medications as well as a long period of myofascial physical therapy combined with meditation/relaxation. My pelvic floor muscles are now normal and relaxed on exam ( confirmed by many Pelvic floor PTs) yet my pain remains the same. Also have intense leg pain. Deciding on next treatment.
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User avatar
Karyn
Posts: 1655
Joined: Fri Sep 17, 2010 12:59 pm
Location: Lowell, MA

Re: Karyn's surgery

Post by Karyn »

judys wrote: I will stay in the area Mon thru Fri and will have PT everyday. I return home and go back 2 weeks later for the same.
Ooooooooh - so it really isn't local for you. :( I'm sorry, I misunderstood. Well, I sure do hope you gain some benefit from going out of your way to do this. At the very least, I think the evaluation is important. I wish you the best, Judy and will be thinking of you! :)
Warmest of regards,
Karyn
Ultra Sound in 03/08 showed severely retroverted, detaching uterus with mulitple fibroids and ovarian cysts.
Pressure and pain in lower abdomen and groin area was unspeakable and devastating.
Total lap hysterectomy in 06/08, but damage was already done.
EMG testing in NH in 04/10 - bilateral PN and Ilioinguals
3T MRI at HSS, NY in 09/10
Bilateral TG surgery with Dr. Conway on 03/29/11. Bilat ilioinguinal & iliohypogastric neurectomy 03/12. TCD surgery 04/14.
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