TIPNA

lizard56 · Joined: 19 Jul 2007 Posts: 27

Hi everyone,

I have found what I believe to be the perfect sitting solution; I never sit on any surface but am suspended above the chair. I have found 'hollow noodles' (flotation devices) sold as pool toys to be fantastic. Just google 'hollow noodles and pool toys' and you will find a supplier. They come in approx 2 metre lengths. I cut two 'rails' of approx 1/2 metre each to sit on. I place each length under each buttock. They are comfortable. I covered each in black tights so that they weren't so conspicuous. I take them everywhere. I NEVER sit directly on a chair. It means that I can sit straight and therefore not damage my back/neck etc.

Preferably though, instead of them, I use two chairs and sit between them. As long as a restaurant has chairs that are fairly flat, I will always ask for 2 and I tell them that I have fractured my coccyx or that I have a sore back etc! I don't worry what people think. I do what is necessary to avoid making my PN worse.

Hope this helps. Please contact me if I can be of further help. Pls send me a message on this site as my email has changed but I couldn't register it b/c it kept being rejected! It is a gmail address. If anyone from admin is reading this can you please contact me via this forum and tell me how to register my new email address!!

Liz
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recocele repair, squatting with weights at the gym, 2 nerve blocks

luv2shop518 · Joined: 07 Mar 2008 Posts: 22

This is very interesting. My husband and I were watching the show "So you Think you can Dance" and we saw one of the dancers doing pilates on what appeared to be a thick pool noodle-so we started talking and how if we got two and cut them, then it might help. I am so glad you posted this, I am definitely going to try it now. And the black tights-great idea! What size did you buy to fit over the pool noodle?
Thanks again for the information!
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PNE due to childbirth-wasn't dx'd for 12 years. Currently recovering from surgery with Hibner on right side.

bindy15 · Posted: Mon Jun 29, 2009 3:45 pm Post subject:

Hi
I am also a pool noodle sitter and use black knee highs to cover mine, they are very portable and inconspicuous. I have several models, for driving and sitting to teach I use the noodles embedded in a cushion cover. For restaurant, hairdresser etc, I use my 'mobile' mini noodles.
I find it interesting that some of us, myself included, seek hard chairs while others can only get comfort from a soft chair.
Liz have you been seeing Prof Vancaillie, where are you at with your treatment ?

Jude
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PNE from biking, since Dec 2005
Surgery Sydney Australia, April 2008
TIR approach, Prof Vancaillie

lizard56 · Joined: 19 Jul 2007 Posts: 27

Hi jude,

The noodle thing must be a down under idea!! Fancy that. I have not done any more about treatment in Sydney but was in France with my husband and we went to see Dr Bautrant again; he has been pioneering diagnosis with Doppler ultra-sound which measure arterial blood flow of the pudendal nerve. Mine showed entrapment on the left side but i have not decided to do anything yet. I have made a lot of improvement over the last 18 months thru never sitting and after 2 nerve blocks. However, i am still far from recovered and don't know what to do really.
How are you? did surgery work for you? Are you back working? Do you still see prof Vancaillie?
I have taken this year off from work and am enjoying the freedom although I do find that I think about the PN more when i am not so busy and that is not a good thing.

Would love to talk to you some time. Can you give me your phone number? Having said that, I need to update my personal details as my email has changed. So maybe wait until I have done that.

Hope you are doing ok. Do you think that it is possible to recover completely from this?
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recocele repair, squatting with weights at the gym, 2 nerve blocks

bindy15 · Posted: Thu Jul 02, 2009 1:19 am Post subject:

Hi Liz
Great to hear how you are doing and I am also keen to get in touch, can you PM me with your email address or phone number, ta.

Jude
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PNE from biking, since Dec 2005
Surgery Sydney Australia, April 2008
TIR approach, Prof Vancaillie

tobyblack4 · Joined: 13 Mar 2010 Posts: 27 Location: Australia

I just have a question for those of you who have used a pool noodle - is it hard on your legs? I currently use rolled-up towels, but after a while I find my bottom and/or legs getting numb. I don't have much padding on my bottom, plus rectal pain is one of my issues, so I was wondering how hard a surface the pool noodle creates (before I go cutting up one).

Thanks,
Lea
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PN undiagnosed for several years. Daily pain started Sept. 2009. Diagnosed & Botox Nov. 2009, tryciclic Dec. 2009, cortisone inject. Mar 2010, Botox May 2010. Much improved, as long as avoid triggers.

bindy15 · Posted: Mon Apr 26, 2010 10:28 pm Post subject:

Hi Lea
Pool noodles are my lifesavers, yes there have been times when my butt goes numb or my leg needs a 'shake' to get me started ! I can sit for a 5 hour car journey, through a movie and meal. I am also a teacher and the kids are always delivering me my cushion !!!!

Pre surgery this wasnt the case, rectal pain was my primary problem and i sat lopsided on one cheek. I now sit squarely and the harder the surface the better for me, hate soft chairs/couches !

A noodle is a cheap option, i have had so many cast off seating arrangements but this one is cheap and worth a try,

Jude
_________________
PNE from biking, since Dec 2005
Surgery Sydney Australia, April 2008
TIR approach, Prof Vancaillie

Payne in Alaska · Joined: 21 Sep 2009 Posts: 92 Location: palmer alaska

Yes, I bought two pool flooter tubes for $6. One is round and the diameter of three inches and five feet long. To measure where I'd make my cut I used the toilet seat. I would force the tube around the perimeter of the toilet seat, make a black mark where I'd cut it. Cut the tube then used a thin rope to place in the center whole of the pool tube. The shape of the tube would be like a large tear drop after I secured the rope in the middle opening of the pool foam flotter tube (come in bright colors). I place the narrow part of the tear toward the front and the widest part is under my bottom. The sides support my ischem bone of hip. Sometimes I place it sideways with tear on right (uneffected side) and the widest part on the effected left side. I place a three inch cushion on top of tube for the foam of the tube is not soft, hard to sit on, but does make my pubic area float above the seat. I hope that helps people, for it was an expensive solution for me.
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Marie Josee, Conway Patient: PMLT 2.9, after surgery 0.79. Trans Vaginal approach. Left sided PNE and Ilinogunial Neuropathy 5.8 MLT. Surgery 4/09 in NH. Pain symptoms started 6/8.

Joan A. · Joined: 30 Apr 2004 Posts: 59 Location: Northern California

Hi Lea,
I too have rectal pain and not much padding. I don't think the noodles would work for me because I can't sit on two chairs spread apart. I have to sit on one chair and on one side and I avoid doing that like the plague.
I don't usually go to restraurants unless they have a pub table or bar where I can stand.

In my car, I have a coccyx cushion, (with the hole in the back) on the bottom and a blow up neck cushion on top of that with the opening facing the back also. I can drive around town doing my errands, but only a couple times a week and not more than 2 or 3 errands (I live in a small town.) I don't blow up the neck pillow all the way.

Joni
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PN symptoms since March 2003
Dr. Benson November 2003 PNMLT 2.1 both sides
Dr. Renney doesn't rec surgery for me because of other medical factors

GregT · Joined: 23 Mar 2004 Posts: 4158 Location: Pineville, LA

Joni,

Everyone sort of has to work with whatever they've got to come up with what works best for them. I've toyed around with lots of different ideas in my time and normally people have to just play around with several different ideas until they get something to half-way work.
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Had PN surgery in France in Dec, 2001. Sitting is a bit better, but I still have muscular pain in much of the pelvic area. Never had pain on one side or the other, just in the middle.

Joan A. · Joined: 30 Apr 2004 Posts: 59 Location: Northern California

Hi Greg,

Yes, "half-way" is the operative word, isn't it? But every little bit helps. Thank you for the reply. Glad to hear from you.

Joni
_________________
PN symptoms since March 2003
Dr. Benson November 2003 PNMLT 2.1 both sides
Dr. Renney doesn't rec surgery for me because of other medical factors