Need support for surgery please

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spiritgirl
Posts: 6
Joined: Thu Jan 06, 2011 6:36 am
Location: Raynham, Ma

Need support for surgery please

Post by spiritgirl »

Hi Everyone,

I am looking for support as I go thru surgery on Tuesday (March 20. 2012) with Dr Conway)

I am starting to get very anxious and started looking for people who have had sucessful surgery.

Then found you as the most recent date and was hoping tha maybe you could help me.

I am not very familiar how this forum works, so any suggestions/directions would be helpful !!

Thanks , Bobbi
Pudendal Neuralgia started placement of a constrainer Liner for a Total Hip Replacement.
Was finally diagnosed at John Hopkins Hospital and was referred to Dr Mark Conway in NH.
Pudendal decompression in August 2009. Unsuccessful
TG Decompression scheduled for 03/20/2012 by Dr Conway
calluna
Posts: 1058
Joined: Mon Sep 27, 2010 11:57 pm

Re: Need support for surgery please

Post by calluna »

Hello Bobbi, welcome to the forum.

If you have a look through the Success Stories section, you'll see there are quite a few of us who have seen good results with surgery. It is very scary waiting for surgery, I remember how terrified I was. But as you will see from my signature, 6 months post op I am doing pretty well.

How did you get PN? - have you had it for long?
spiritgirl
Posts: 6
Joined: Thu Jan 06, 2011 6:36 am
Location: Raynham, Ma

Re: Need support for surgery please

Post by spiritgirl »

Hi Calluna and thank you so much for the welcome,

This pain started after a hip constrainment liner was replaced. I thought it was the tailbone. Even had harfware removed from a spinal fusion.
That didnt help. I went to several physicians in Boston and noone had any idea. I ended up At John Hopkins and it was there that I was diagnosed.
Noone there was doing the surgery so the head of neurosurgery finally sent my chart to Dr Marvel who called me and said there was a specialist in my backyard.
This was Dr Conway in New Hanpshire. I have had one surger,the TIR, which did not work. Its been 6 years and I am furious that the medical profession hasn't gotten this right. We need a male senator to have this and then maybe more dollars can go toward research.

Sorry for going on and on... Thanks for listening and how are you doing ?

hugs, Bobbi


P.S. Do you know how I can get my signature on the profile ?
Pudendal Neuralgia started placement of a constrainer Liner for a Total Hip Replacement.
Was finally diagnosed at John Hopkins Hospital and was referred to Dr Mark Conway in NH.
Pudendal decompression in August 2009. Unsuccessful
TG Decompression scheduled for 03/20/2012 by Dr Conway
calluna
Posts: 1058
Joined: Mon Sep 27, 2010 11:57 pm

Re: Need support for surgery please

Post by calluna »

Hello again Bobbi

Your situation sounds quite complicated! And you've already had one surgery for this - how long ago was that?

One thing I can help with, is the signature. Towards the top left on any page you'll see a link saying User Control Panel. Click on this link. Then select the tab saying Profile, and choose Edit Signature - and there you are. ;)

Will be thinking of you tomorrow, I do hope that all goes well. Take care of yourself, lots of rest afterwards. :)
adg1403
Posts: 24
Joined: Thu Jun 30, 2011 8:26 pm
Location: Bristol, United Kingdom

Re: Need support for surgery please

Post by adg1403 »

Hi Bobbi

Just wanted to add my best wishes for tomorrow - I had surgery 5 months ago, so know how you're feeling. Hope it goes well, let us know how you're getting on when you're feeling up to posting again.

Regards,

Andrew
Woke up one day in February 2004 wth PN symptoms - cause not known. Numerous drugs, epidurals and nerve blocks (incl CT guided) later, PNE diagnosed in early 2010. Decompression surgery (TG) undertaken at Frenchay Hospital, Bristol in October 2011. Currently under care of Dr Gareth Greenslade, Pain Consultant, Frenchay Hospital.
spiritgirl
Posts: 6
Joined: Thu Jan 06, 2011 6:36 am
Location: Raynham, Ma

Re: Need support for surgery please

Post by spiritgirl »

Hi Andrew,

Thank you so much for your well wishes. I am so anxious to move along my journey.

And how are you doing ?

Hugs,Bobbi

Email: bobbimeehan@gmail.com
Pudendal Neuralgia started placement of a constrainer Liner for a Total Hip Replacement.
Was finally diagnosed at John Hopkins Hospital and was referred to Dr Mark Conway in NH.
Pudendal decompression in August 2009. Unsuccessful
TG Decompression scheduled for 03/20/2012 by Dr Conway
adg1403
Posts: 24
Joined: Thu Jun 30, 2011 8:26 pm
Location: Bristol, United Kingdom

Re: Need support for surgery please

Post by adg1403 »

Hi

I'm doing OK thanks - I've posted quite a bit on the 'post surgery recovery' thread on the 'Surgery' part of the forum if you want to see what my journey post surgery has been like, I've tried to post something every 4 weeks or so.

I hope all goes well for you tomorrow, get as much rest as you can.

Andrew
Woke up one day in February 2004 wth PN symptoms - cause not known. Numerous drugs, epidurals and nerve blocks (incl CT guided) later, PNE diagnosed in early 2010. Decompression surgery (TG) undertaken at Frenchay Hospital, Bristol in October 2011. Currently under care of Dr Gareth Greenslade, Pain Consultant, Frenchay Hospital.
spiritgirl
Posts: 6
Joined: Thu Jan 06, 2011 6:36 am
Location: Raynham, Ma

Re: Need support for surgery please

Post by spiritgirl »

Thanks Andrew, will catch up with you after the surgery

hugs,Bobbi
Pudendal Neuralgia started placement of a constrainer Liner for a Total Hip Replacement.
Was finally diagnosed at John Hopkins Hospital and was referred to Dr Mark Conway in NH.
Pudendal decompression in August 2009. Unsuccessful
TG Decompression scheduled for 03/20/2012 by Dr Conway
User avatar
Violet M
Posts: 6651
Joined: Mon Sep 06, 2010 6:04 am
Location: United States
Contact:

Re: Need support for surgery please

Post by Violet M »

HI Bobby,

Was out of town when you made your original post but I just wanted to say I hope all went well. Hope to hear some positive results from you soon. ;)

Hugs,

Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
spiritgirl
Posts: 6
Joined: Thu Jan 06, 2011 6:36 am
Location: Raynham, Ma

Re: Need support for surgery please

Post by spiritgirl »

Hi Violet,

All is well.Came home with catheter and a sore butt.

Will catch up with you later

Hope you are doing well.

love, bobbi
Pudendal Neuralgia started placement of a constrainer Liner for a Total Hip Replacement.
Was finally diagnosed at John Hopkins Hospital and was referred to Dr Mark Conway in NH.
Pudendal decompression in August 2009. Unsuccessful
TG Decompression scheduled for 03/20/2012 by Dr Conway
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