Need help with a response

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Celeste
Posts: 574
Joined: Sat Sep 18, 2010 2:24 am
Location: central Ohio

Re: Need help with a response

Post by Celeste »

FWIW I wasn't suggesting that you cut her out of your life in any way, just that you try to let this one email go on account of how she is as convinced in her beliefs about surgery as you are about your beliefs. I'm certain that your mother loves you unconditionally, which is a separate thing from agreeing with every decision that you make. I'm a mother, and I can make this distinction. I'm not sure that 100% approval is a possible or desirable, but that's just me. Given all you've told me about your visit to Conway, I don't think I can understand HOW she might have thought you were in any way unclear on her position. :lol:
PNE as a result of childbirth, 2002. Treatment by the Houston team, with neurosurgery by Dr. Ansell in 2004. My left side ST and SS ligaments were found to be grown together, encasing the pudendal nerve.

I am cured. I hope you will be, too.

There are no medical answers on the forum. Your only hope is to go to a doctor. I was very happy with the Houston team, which has treated the most PNE patients (well over 400), more than any other US provider.

http://www.tipna.org
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Karyn
Posts: 1655
Joined: Fri Sep 17, 2010 12:59 pm
Location: Lowell, MA

Re: Need help with a response

Post by Karyn »

Oh, no Celeste! I didn't get the impression from you that you were suggesting I cut her out. As a matter of fact, your response made a lot of sense to me. It was kinda what prompted my last post, after re-thinking things. So, thank you! And I agree with you 100% about the approval thing. That's why I said what I did about this being about a deficiancy with me.
As far as being unclear about her position - I can understand why you would say that. We discussed this privately several months ago and all you've got to work with is bits and pieces. My mom seems to flip-flop a lot in regards to "support" and when she flips to support role, I immediately dismiss the "flop" that occurred a week ago, a month ago, whatever. (Sigh ....) It's an emotional rollercoaster ride for all of us!
Warmest 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.
donstore
Posts: 463
Joined: Mon Nov 08, 2010 6:13 am
Location: San Francisco

Re: Need help with a response

Post by donstore »

Karyn,
I have been going through the same sort of thing with my girlfriend. She believes that everything can be cured with herbs, acupuncture, or nutrition. I know she only wants the best for me but bottom line, nobody knows this problem like people who have it. Looking at it from the outside, no matter how much someone loves you, is never the same as being inside the pain. That perspective is unique and is extremely difficult for someone who doesn't have this problem to appreciate. That is why decisions on how to proceed are so personal. Surgery won't make you worse and it could make you better. You've tried other avenues and now this is the logical choice. Regardless of the ultimate result, the only true regret would be not to have done everything you could. Good luck.
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
User avatar
Karyn
Posts: 1655
Joined: Fri Sep 17, 2010 12:59 pm
Location: Lowell, MA

Re: Need help with a response

Post by Karyn »

Hi Donstore,
Yes! Your girlfriend sounds a lot like my mom! In addition to the medical stuff, I HAVE done the acupuncture, herbs and nutrition! She's of the belief that "Energy Healing" is where I should be at. It is difficult and upsetting with my mom, but I sincerely feel for you having a partner who really doesn't understand. How do the two of you relate? I can walk away from my Mom. I can only imagine the additional stress this places on your relationship. Or are you of the mindset (which I'm trying to acheive) that it's OK for her to not understand?
donstore wrote:Regardless of the ultimate result, the only true regret would be not to have done everything you could.
Thank you for that, Don. It really did make me feel better!
Warmest 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.
donstore
Posts: 463
Joined: Mon Nov 08, 2010 6:13 am
Location: San Francisco

Re: Need help with a response

Post by donstore »

Karyn,
Sounds like your mom and my girlfriend are the same, a couple of old hippies. As an old hippie myself (60 years old), I know where they are coming from. The generalized rebellion against authority in the sixties also unfortunately included a questioning of science. People are only the sum of their experiences, especially the ones that they have when they are young. This is all well and good on a theoretical level, but reality requires evidence based decisions. As you know, this process consumes you and of course you seek support from those who love you. Sometimes they can only do as much as they can do.
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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