hi
pm
when i know the full costs of my op privately, i will let you know, i am still waiting for all the bills to come in !
andrea
Post operative follow up experience
Re: Post operative follow up experience
Janet
I have found this that Quilter posted to Shana on May 13 2013 - i can remember Karyn's posting but can't find it at moment .
POSTOP PROTOCOL
Postop Week 1-3
Modified bed rest. No lifting, squatting or bending. Able to sit for toileting only. Limit stairs to 1-2 times / day
Household ambulation, limit to 5-10 minutes at a time (3-4 times / day max. Able to stand 5-10 minutes for meal prep, brush teeth bathe, etc. Exercise: diaphragmatic breathing, ankle pumps, heel slides, gentle trunk rotation
Postop Week 3-6
Same as above
May sit with cushion 5-10 minutes (2-3 times per day) for meals if it doesn't cause pain. May gradually increase walking/standing to 10-20 minutes (3-4 times per day)
Postop Week 4-8
Begin gentle postop PT- myofascial release and gentle connective tissue release. Vaginal or rectal manual therapy may begin chen cleared by MD
Postop Week 6-12
Avoid squatting, bending or lifting
Gradually increase walking/standing (limit to 30 minutes at a time. Limit stairs to 2-3 times per day. NO high impact activities, (biking, running, weight lifting or aerobics
May begin aquatic exercises, gentle stretching or basic yoga exercises when cleared by MD
12 Weeks to 1 year
Avoid frequent squatting, heavy lifting, prolonged sitting and high impact activities
12-24 months
Avoid frequent squatting, heavy lifting and prolonged sitting
No high impact activities
Rest of Quilters thread includes scanned information too http://www.pudendalhope.info/forum/view ... col#p36554
Rosemary
I have found this that Quilter posted to Shana on May 13 2013 - i can remember Karyn's posting but can't find it at moment .
POSTOP PROTOCOL
Postop Week 1-3
Modified bed rest. No lifting, squatting or bending. Able to sit for toileting only. Limit stairs to 1-2 times / day
Household ambulation, limit to 5-10 minutes at a time (3-4 times / day max. Able to stand 5-10 minutes for meal prep, brush teeth bathe, etc. Exercise: diaphragmatic breathing, ankle pumps, heel slides, gentle trunk rotation
Postop Week 3-6
Same as above
May sit with cushion 5-10 minutes (2-3 times per day) for meals if it doesn't cause pain. May gradually increase walking/standing to 10-20 minutes (3-4 times per day)
Postop Week 4-8
Begin gentle postop PT- myofascial release and gentle connective tissue release. Vaginal or rectal manual therapy may begin chen cleared by MD
Postop Week 6-12
Avoid squatting, bending or lifting
Gradually increase walking/standing (limit to 30 minutes at a time. Limit stairs to 2-3 times per day. NO high impact activities, (biking, running, weight lifting or aerobics
May begin aquatic exercises, gentle stretching or basic yoga exercises when cleared by MD
12 Weeks to 1 year
Avoid frequent squatting, heavy lifting, prolonged sitting and high impact activities
12-24 months
Avoid frequent squatting, heavy lifting and prolonged sitting
No high impact activities
Rest of Quilters thread includes scanned information too http://www.pudendalhope.info/forum/view ... col#p36554
Rosemary
Re: Post operative follow up experience
Rosemary,
thanks for posting the info (just what I was thinking) so the others have an idea of what to expect and how to proceed with recovery.
Janet
thanks for posting the info (just what I was thinking) so the others have an idea of what to expect and how to proceed with recovery.
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: Post operative follow up experience
I still can't find the other info - will look again later - i can't remember who the conversation was with on Karyn's thread at the moment (searching takes my mind off my own pain for a while)janetm2 wrote:Rosemary,
thanks for posting the info (just what I was thinking) so the others have an idea of what to expect and how to proceed with recovery.
Janet
i wonder if Violet could make this protocol a Sticky somewhere so that it would be available to others all the time ? Some seem to be left with little advice post op.
Rosemary
Re: Post operative follow up experience
Hi Everyone,
I found the thread for Dr. Conways post-op guidelines under SURGERY: http://www.pudendalhope.info/forum/view ... =44&t=1375
Please keep in mind that these are guidelines only. Doreen (Quilter2) did follow them very closely, with the exception of doing PT. I really didn't follow them at all; but instead listened to my body (sometimes
), and let it dictate what I could and couldn't do.
Unlike soft tissues (muscles, tendons, ligaments...) or bones, or even organs; nerves don't heal the same way for everyone. There's no definitive timeline for when you should feel a certain way or be able to do certain things. What helps the pain and gets us through the day is also different for everyone. For instance, I've never found ice helpful, but it's invaluable to many others. I can't tolerate meds, but other people really need them to be able to function. Etc ...
I think it's reasonable to expect increased pain (especially burning) for the first couple of months. Try to gradually increase your activities to your own, personal comfort level.
If you maybe bend over one more time than you should've and have a horrible pain flare; attach the flare to the activity and do your best to ride it out. If walking for 5 minutes causes you increased pain; walk for 3 minutes, instead. Most of all, be proud of that three minutes you walked! It's very easy to get caught up in despair and frustration because you've been in unspeakable pain for so many years, then have a major surgery with no immediate pain relief and more dysfunction. But this isn't for the rest of your life. One of my favorite "Violet's words of wisdom" is: Recovery should be measured in months and years. Not days or weeks. Upsetting, but true. The tiny improvements are difficult to notice in the first few months. I think it's more realistic to gage your progress after six months (my opinion, only!).
Hang in there, Lex! Please let us know if there's anything we can do to help!
Hugs,
Karyn
I found the thread for Dr. Conways post-op guidelines under SURGERY: http://www.pudendalhope.info/forum/view ... =44&t=1375
Please keep in mind that these are guidelines only. Doreen (Quilter2) did follow them very closely, with the exception of doing PT. I really didn't follow them at all; but instead listened to my body (sometimes
), and let it dictate what I could and couldn't do.Unlike soft tissues (muscles, tendons, ligaments...) or bones, or even organs; nerves don't heal the same way for everyone. There's no definitive timeline for when you should feel a certain way or be able to do certain things. What helps the pain and gets us through the day is also different for everyone. For instance, I've never found ice helpful, but it's invaluable to many others. I can't tolerate meds, but other people really need them to be able to function. Etc ...
I think it's reasonable to expect increased pain (especially burning) for the first couple of months. Try to gradually increase your activities to your own, personal comfort level.
If you maybe bend over one more time than you should've and have a horrible pain flare; attach the flare to the activity and do your best to ride it out. If walking for 5 minutes causes you increased pain; walk for 3 minutes, instead. Most of all, be proud of that three minutes you walked! It's very easy to get caught up in despair and frustration because you've been in unspeakable pain for so many years, then have a major surgery with no immediate pain relief and more dysfunction. But this isn't for the rest of your life. One of my favorite "Violet's words of wisdom" is: Recovery should be measured in months and years. Not days or weeks. Upsetting, but true. The tiny improvements are difficult to notice in the first few months. I think it's more realistic to gage your progress after six months (my opinion, only!).
Hang in there, Lex! Please let us know if there's anything we can do to help!
Hugs,
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.
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.
Re: Post operative follow up experience
Karyn,
Thanks for the info and advice. You are correct that the guidelines are not exact but I think people need both that and the words you said to give them an idea of the range you also mentioned. It would be good to post what you said and others about how long it may take and that there is increased pain so again likr Rosemary said easier than searching or asking each time. Guess we need to agree on what is a good way to give folks an idea of post surgery.
Janet
Thanks for the info and advice. You are correct that the guidelines are not exact but I think people need both that and the words you said to give them an idea of the range you also mentioned. It would be good to post what you said and others about how long it may take and that there is increased pain so again likr Rosemary said easier than searching or asking each time. Guess we need to agree on what is a good way to give folks an idea of post surgery.
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: Post operative follow up experience
Hi Janet,
Great suggestion! I'll bring it to the table for our next directors meeting. In the mean time, if there's anyone who would like to contribute their post-op experience, please feel free! This is just so difficult, because everyone is so different. There's no ONE right way. There's no black and white. For instance, some find PT and nerve blocks helpful after surgery - some don't. I have a friend who is also a bilateral. Four weeks after the surgery, she was bending over, tying shoe laces on her feet. I couldn't even think of bending until after five months. Some people can't walk/shuffle for more than a few minutes for several weeks after their surgery, I was walking around the block after three weeks.
How do we comprehensively compile this?
Kindest of regards,
Karyn
Great suggestion! I'll bring it to the table for our next directors meeting. In the mean time, if there's anyone who would like to contribute their post-op experience, please feel free! This is just so difficult, because everyone is so different. There's no ONE right way. There's no black and white. For instance, some find PT and nerve blocks helpful after surgery - some don't. I have a friend who is also a bilateral. Four weeks after the surgery, she was bending over, tying shoe laces on her feet. I couldn't even think of bending until after five months. Some people can't walk/shuffle for more than a few minutes for several weeks after their surgery, I was walking around the block after three weeks.
How do we comprehensively compile this?
Kindest 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.
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.
Re: Post operative follow up experience
Hi KarynKaryn wrote: How do we comprehensively compile this?
Kindest of regards,
Karyn
Would a Sticky thread headed something like ' Post Operative Guidelines and Personal Operation Experiences' work ?
The different doctor's post operative guidelines could be posted plus any personal experiences that anyone wanted to add to the thread.
Maybe a mixed up thread but anyone looking on the site who was going to have the operation could then find the Thread easily without searching - read through it and make up their own mind - but at least they will have some information to go on.
Just my thoughts - i have not had this operation but do know the feeling of having had an operation - listening to your body and hoping that you are doing sensible things to get better not worse.
Rosemary
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Anne smith
- Posts: 72
- Joined: Wed Feb 08, 2012 12:44 pm
Re: Post operative follow up experience
I totally applaud your opinion! I'm sorry this is the most awfull thing to say!! But shout cancer and you will be fast tracked tommorow! . This is the most awfull lonely complaint! But they make us wait, or take our monet(in my case) for pudendal blocks ( in reality there only diagnostic) then we are offered pain management, Whitch is like chucking sponges at an elephant!!! Then left alone! Sorry that is my rant over
Anne smith
Anne smith
Iliostomys at twenty five, just after delivery of baby
Started with rectal pain about twenty one years later
Ten years to get diagnosis, had to research myself!
Two horrific surjurys two(mend) a perennial hernia
Now with mr baranofskis team and traveling to London shortly for injections into alcocks.
Started with rectal pain about twenty one years later
Ten years to get diagnosis, had to research myself!
Two horrific surjurys two(mend) a perennial hernia
Now with mr baranofskis team and traveling to London shortly for injections into alcocks.
Re: Post operative follow up experience
Although I hate the thought of anyone else having this debilitating, life changing, exhausting PNE it does help knowing I'm not alone. When it first happened to me over 4 years ago, I had no idea why I'd woken up in such pain after surgery. Sadly neither did the surgeon, in fact he treated me like I was a liar, imagining it. I went back 4 times over the next 9 months, I also saw a colleague of his (all at a private hospital) he also told me nothing was wrong, He even wrote to my gp to say how well his colleagues surgery had gone, because of this, it took me years to get anyone to tell me there was indeed a problem. He really screwed me up mentally as well as giving me PNE. I'd almost lost faith in doctors but thankfully University College Hospital in London took me under their wing. I can't thank Dr Curren and her team enough for trying to help me. I know life will never be the same for me (and my poor husband) but I just have to pace myself. I know I'll never be able to ride my bike again, be intimate properly with my husband. I danced at my sons wedding but oh how I suffered the next day. We sufferers have all been there of course but supporting each other, especially on bad days, really helps. Gaining information from what helps others is wonderful too. A lot of people have said how PT helps. If anyone knows of someone in Kent or Greater London they could recommend I'd be really grateful.