I would like to try a wheelchair with some arrangement of cushions to sit, but my physical therapist doesn't seem to support it. I am the first patient she seen with pudendal neuralgia, so we are both new at this.
I can only stand for about half an hour and I can sit for 20 minutes with an ice pack. 2 min without. I'm better when I'm in a reclining position or laying down completely horizontal. All of this is improvement, but I have not been free of the pain since it began.
Any ideas on what I should say to convince her or my primary care doctor to prescribe a wheelchair? I cannot work in the condition that I am in, but at least with some help I could try.
How to get a wheelchair
How to get a wheelchair
Anal/rectal pain began 12/12 | Pain advanced to entire pelvis by 2/13 |
PF PT 2/13 to 7/13 |Acupuncture 7/13 to present
Pain is CONSTANT, made worse by standing, walking, kneeling
UNBEARABLE with sitting |Cushions mock me
20+ years of fibromyalgia | Interested in not losing my marbles...
My goal: To find creative ways to live and work with PN, while pursuing wellness.
PF PT 2/13 to 7/13 |Acupuncture 7/13 to present
Pain is CONSTANT, made worse by standing, walking, kneeling
UNBEARABLE with sitting |Cushions mock me
20+ years of fibromyalgia | Interested in not losing my marbles...
My goal: To find creative ways to live and work with PN, while pursuing wellness.
Re: How to get a wheelchair
Grace,
My PT suggested a rehab place Kearnan Hospital in Baltimore Maryland with a PT who had just done this for another patient with PN. I had to get a medical supplier for the wheelchair and Roho cushion and he worked with the Kearnan PT to figure out the setup and make sure the write up passed insurance. The doctor signed that version along with an initial prescription for the " sitting clinic" or "wheelchair clinic". I am not upp to digging for paperwork at the moment but could find it this weekend if you would like. I think the supplier was American Medical. Oh and I already had chronic foot pain so that may have helped my case for the wheelchair? The Roho alone would be great but.it is kinda big, I think someone got a smaller one that might work on other chairs. I endedup buying a secnd cushion to use on an older wheelchair I already had so I could leave that at work.
Janet
My PT suggested a rehab place Kearnan Hospital in Baltimore Maryland with a PT who had just done this for another patient with PN. I had to get a medical supplier for the wheelchair and Roho cushion and he worked with the Kearnan PT to figure out the setup and make sure the write up passed insurance. The doctor signed that version along with an initial prescription for the " sitting clinic" or "wheelchair clinic". I am not upp to digging for paperwork at the moment but could find it this weekend if you would like. I think the supplier was American Medical. Oh and I already had chronic foot pain so that may have helped my case for the wheelchair? The Roho alone would be great but.it is kinda big, I think someone got a smaller one that might work on other chairs. I endedup buying a secnd cushion to use on an older wheelchair I already had so I could leave that at work.
Janet
2007-08 pelvic muscles spasms treated by EGS. 6/27/10 sat too long on hard chair- spasms, EGS not work Botox help, cortisone shots in coccyx help, still pain, PT found PNE & sent me to Dr Marvel nerve blocks & MRN, TG left surgery 5/9/11. I have chronic bunion pain surgery at age 21. TG gave me back enough sitting to keep my job & join in some social activities. I wish the best to everyone! 2019 luck with orthotics from pedorthist & great PT allowing me to get off oxycodone.
Re: How to get a wheelchair
Grace,
Looks like I did not get a copy of the writeup that justified the cushion and chair. It was listed as wheelchair sitting clinic and the roho I got had 11 air "fingers" across with the three center fingers at a lower level from back to 2/3 or 4/5 front and a few of the front with just the center lowered. Wish I had more info for you.
Janet
edit to add wheelchear seating clinic came up on google so you can find someplace near you
Looks like I did not get a copy of the writeup that justified the cushion and chair. It was listed as wheelchair sitting clinic and the roho I got had 11 air "fingers" across with the three center fingers at a lower level from back to 2/3 or 4/5 front and a few of the front with just the center lowered. Wish I had more info for you.
Janet
edit to add wheelchear seating clinic came up on google so you can find someplace near you
2007-08 pelvic muscles spasms treated by EGS. 6/27/10 sat too long on hard chair- spasms, EGS not work Botox help, cortisone shots in coccyx help, still pain, PT found PNE & sent me to Dr Marvel nerve blocks & MRN, TG left surgery 5/9/11. I have chronic bunion pain surgery at age 21. TG gave me back enough sitting to keep my job & join in some social activities. I wish the best to everyone! 2019 luck with orthotics from pedorthist & great PT allowing me to get off oxycodone.
Re: How to get a wheelchair
Thank you! This is really helpful.
Anal/rectal pain began 12/12 | Pain advanced to entire pelvis by 2/13 |
PF PT 2/13 to 7/13 |Acupuncture 7/13 to present
Pain is CONSTANT, made worse by standing, walking, kneeling
UNBEARABLE with sitting |Cushions mock me
20+ years of fibromyalgia | Interested in not losing my marbles...
My goal: To find creative ways to live and work with PN, while pursuing wellness.
PF PT 2/13 to 7/13 |Acupuncture 7/13 to present
Pain is CONSTANT, made worse by standing, walking, kneeling
UNBEARABLE with sitting |Cushions mock me
20+ years of fibromyalgia | Interested in not losing my marbles...
My goal: To find creative ways to live and work with PN, while pursuing wellness.
Re: How to get a wheelchair,and uses for foam
I just wrote about temper tic foam on the above site,can,t remember title,anyway, I made my mom on out of a piece
From my bed ones. It worked well for her,she was97',but no nerve injurys. It may help to use it along with simple half inflated beach circle tube for ,kids. Put that down first then the foam, If you have a bed sham they would both fit inside and keeps them firmly together,Adjust the air for comfort to your particular pain. good luck. Works for cAr driving as well. I use just the foam at an angle for my nerve spot to sit. I can only drive a few miles,but it works well.have other ideas for using this process,
.Diana10
From my bed ones. It worked well for her,she was97',but no nerve injurys. It may help to use it along with simple half inflated beach circle tube for ,kids. Put that down first then the foam, If you have a bed sham they would both fit inside and keeps them firmly together,Adjust the air for comfort to your particular pain. good luck. Works for cAr driving as well. I use just the foam at an angle for my nerve spot to sit. I can only drive a few miles,but it works well.have other ideas for using this process,
.Diana10