75 % better, maybe more

Welcome to HOPE. We have tried to provide a place for newcomers to make their introductions. We will try our best to make you welcome and guide you through our website and Forum and assist you as best as we can through any questions you have regarding Pudendal Neuralgia.
User avatar
Quilter 2
Posts: 163
Joined: Fri Sep 17, 2010 6:24 pm
Location: North East TN

75 % better, maybe more

Post by Quilter 2 »

Hi to all;
This isn't a new topic, but I can't seem to find where to write this. Sorry Mods.
May first was my 18 mo. "anniversary!!" I spent it shoveling compost out of a truck!! Not to exciting for most, but a MAJOR accomplishment for me. In the AM I took 1 Valium suppository and 2 Tramadol. NO BURNING!! I never took anything until about midnight and then it was only 1 Tramadol. I continued to unload 3 more trucks over the next few days. So, I guess I'm about 75 % better. The only problem I seem to have gotten is my lower back aching, but I think and hope that was from the bending. I tried to use my feet for spreading the compost and not bend but that was almost impossible. I will know if the lower back ache is from the shoveling in a few days/weeks. Sitting seems to make it worse but I think I just need to wait it out. I'm done with the compost so I can give it a rest and see if the shoveling was the cause. Hope so.
For all of you, still considering the surgery: I'm glad I had it done. I HATED the limited activity for the first year. I try to walk every day to strengthen my leg muscles.
There are days that I burn but it's so strange. The burning generally happens when I've had a lazy day and laid down to watch the tv. The more I'm up, the better the day. Doesn't seem to make sense but that's what has been happening.
I give up trying to figure it out. Four years is enough time to give to this stupid nerve condition. I just take whatever the day brings and know another day might be better.
My very best to all of you.
Stay strong and positive even in the worse days because there really is hope and help out there.
Love to each and every one of you for the pain you suffer each and every day.
Doreen
Five pudendal nerve infiltrations with good results.
Sixth Injection left me with more burning, more pain, pain in buttocks.
Botox shot didn't notice any difference
Physical Therapy - Aquatic and Myofascial
External and Internal Manual Therapy on the obturator muscle.
3T MRI with Dr. Potter
2nd opinion with Dr. Hibner in Phoenix
Loretta Robertson PT Phoenix
Decompression surgery Nov. 1, 2011
nyt
Posts: 1165
Joined: Sun Oct 31, 2010 3:24 am

Re: 75 % better, maybe more

Post by nyt »

Fantastic news! Praying that your improvement continues.
2/07 LAVH and TOT 7/07 TOT right side removed 9/07 IL, IH and GN neuropathy 11/07 PN - Dr. Howard
6/08 Obturator neuralgia - Dr. Conway 11/08 Disability, piriformis syndrome - Dr. Howard
4/09 Bilateral obturator decompression surgery, BLL RSD - Dr. Howard
9/10 Removed left side TOT, botox, re-evaluate obturator nerve - Dr. Hibner
2/11 LFCN and saphenous neuralgia - Dr. Dellon 2/11 MRI with Dr. Potter - confirmed entrapment
5/11 Right side TG - Dr. Hibner 2012 Left side TG - Dr. Hibner
HerMajesty
Posts: 1134
Joined: Sat Sep 18, 2010 12:41 am
Location: North Las Vegas, Nevada

Re: 75 % better, maybe more

Post by HerMajesty »

Doreen!

I think you must have had surgery while I wasn't spending much time on the board because I didn't even know you had it done! I have been thinking f you and wondering how you were :D

I think a lot of people are only on this board when they are doing poorly so then you see speculation about whether surgery really works for anybody. I think lots of people considering surgery would appreciate it, if you would post about your improvement under the category heading, "success stories" - so they know somebody got better.

I am so happy you feel good...and should I say I am so happy you are shovelling compost? Hmmm...I'm happy about that if you are ;) Great to hear from you!
pelvic pain started 1985 age 14 interstitial cystitis. Refused medical care from age 17, did GREAT with self care for years.
2004 PN started gradually, disabled by 2009. Underlying cause SIJD & Tarlov cysts
improved with PT & meds: neurontin, valium, nortriptyline, propanolol. (off nortriptyline & propanolol now, yay!)
Tarlov cyst surgery with Dr. Frank Feigenbaum March 20, 2012.
Results have been excellent so far; but I won't know my final functional level for a couple of years.
User avatar
helenlegs 11
Posts: 1779
Joined: Fri Sep 17, 2010 9:39 am
Location: North East England

Re: 75 % better, maybe more

Post by helenlegs 11 »

Wonderful news :D Doreen,

Thanks for the update.. . . and glad you got the compost shifted too ;) , although if you used this activity to find out how well you were, that's just madness. You must have been feeling ok to tackle this, so pleased you didn't have any great problems WOW!!!
This is definitely something that I would do btw ;)

The fact that you have suffered for a while, well too long. . . . is also good news for others in a similar situation.

Take care,
Helen
Fall 2008. Misdiagnosed with lumber spine problem. MRN June 2010 indicated pudendal entrapment at Alcocks canal. Diagnosed with complex variant piriformis syndrome with sciatic, pudendal and gluteal entrapment's by Dr Filler 2010.Guided piriformis botox injection 2011 Bristol. 2013, Nerve conduction test positive; new spinal MRI scan negative, so diagnosed for the 4th time with pelvic nerve entrapment, now recognised as Sciatic, pudendal, PFCN and cluneal nerves at piriformis level.
User avatar
Quilter 2
Posts: 163
Joined: Fri Sep 17, 2010 6:24 pm
Location: North East TN

Re: 75 % better, maybe more

Post by Quilter 2 »

Thanks guys.
I know I should be on here more with updates but I just want to keep moving. Sitting is not my best friend.-
Violet told me a while back that she improved a bit more after the 18 month period so I'm-a-hopin' I can write the same :D If not, well, I'm still glad I'm better than I was. Life can go on with some modifications.
My best to you all;
Doreen
Five pudendal nerve infiltrations with good results.
Sixth Injection left me with more burning, more pain, pain in buttocks.
Botox shot didn't notice any difference
Physical Therapy - Aquatic and Myofascial
External and Internal Manual Therapy on the obturator muscle.
3T MRI with Dr. Potter
2nd opinion with Dr. Hibner in Phoenix
Loretta Robertson PT Phoenix
Decompression surgery Nov. 1, 2011
calluna
Posts: 1058
Joined: Mon Sep 27, 2010 11:57 pm

Re: 75 % better, maybe more

Post by calluna »

Doreen, just been reading this thread - amazing! I hope that you continue to improve.

I notice that you mentioned at the beginning that you weren't sure where to post this - there is a Success Stories section. ;) I think that your story definitely counts as a success.
shana
Posts: 121
Joined: Sun Mar 03, 2013 6:24 am

Re: 75 % better, maybe more

Post by shana »

Doreen I'm so glad u shared ur success story. I'm relatively knew to this forum but not knew to the pain. I've been in pelvic pain now 5 1/2 years I'm happy u were able to take care of ur pain in 4 years. If only my fr hadn't kept telling me he can fix it I may hv been abl to start my journey towards healing sooner.

I wasn't clear frm ur signature who did ur surgery. Was it hibner? Did u see other surgeons bfr u decided who u wanted to do surgery? I'm scheduled to se Dr. Conway in July. I live in NJ so even though he's a 5hr drive he's really the closest. My pt did tell me if I do decide to hv surgery I shld only use Hibner. I know I'm not up to surgery just yet and I hv not even been actually diagnosed w/ PN, I'm self diagnosed at this point, but if I do need surgery just wondering how u chose a surgeon?

Shana
'08 diagnosed with vulvar vestibulitis
'09 vestibulectomy-Dr. Goldstein-failed
'11 right labral repair and release-Dr. Coleman
2/10-8/12 severe depression, minimal dr appointmen
4 different physical therapists '08-'12 no improvement whatsoever
'13 pudendal nerve blocks-Dr. Chapman
More PT
Dr. Conway officially diagnosed PN/PNE 7/13
9/13 Bilateral hip repair Dr. Coleman
10/13-5/14 Major Depression, no dr appointments
More PT
6/14 Dr. Hibner confirmed diagnosis
Looking for help..hoping for answers
User avatar
Quilter 2
Posts: 163
Joined: Fri Sep 17, 2010 6:24 pm
Location: North East TN

Re: 75 % better, maybe more

Post by Quilter 2 »

Hi Shana;
In a nutshell:
After 18 doctors, I self diagnosed as well. Called Conway, 3 months later received and apt. and confirmed I was right. At the time he was only doing TIR surgery. Wanted to try EVERTHING before surgery. Went to Dr. Potter in NY for a MRI. Once again, confirmation. Had many shots including Botox.. Some helped, some didn't. At that time the shots were with Dr. Quesada. I don't know who Conway uses now. Had PT, one that was trained in PN. Not a good idea as far as I'm concerned. Made an appt. with Hibner. After a 9 mo. wait, saw him and his PT. By this time, Dr. C was doing the TG surgery. Back to Conway and decided to have the surgery in NH. We lived in VT, a four and a half hour trip. I liked Conway's manner, concern, call backs(that sometimes takes awhile) and it was closer to home. If I had the surgery in Phoenix, 1, it was double in cost, 2, since you have to stay in a prone position I could only fly to NY by buying 4 tickets. 3 for me to lay down and one for the hubby. There weren't any 3 seaters from NY to VT so I couldn't lay down. St. Joesph hospital was great. After the surgery I stayed 2 days in the hospital and rented the Extended Stay for the following 10 days. Had a checkup with Conway and home I went. I saw him again after 3 months. That was my choice. I knew we were moving to TN and I wanted to be cleared as much as possible before the moving undertaking. That was a nightmare in itself!!
If I had to do it again, I would go to Conway.
I had a great support team with girlfriends and family while I was recovering to the point I could be up for more than an hour a day.
When and if you decide on the surgery, my best advice to you would be follow the paper instructions to a tee. More than likely, you're an active person, so that may be the hardest part for you. It certainly was for me. Meds take care of the pain, but lying in bed for months on end with only an hour of standing almost drove me nuts. I only did it because everyone told me I couldn't!!
Hope this helps Shana. Before Surgery get everything done, organized and LET people help.
My best to you;
Doreen
Five pudendal nerve infiltrations with good results.
Sixth Injection left me with more burning, more pain, pain in buttocks.
Botox shot didn't notice any difference
Physical Therapy - Aquatic and Myofascial
External and Internal Manual Therapy on the obturator muscle.
3T MRI with Dr. Potter
2nd opinion with Dr. Hibner in Phoenix
Loretta Robertson PT Phoenix
Decompression surgery Nov. 1, 2011
User avatar
Violet M
Posts: 6651
Joined: Mon Sep 06, 2010 6:04 am
Location: United States
Contact:

Re: 75 % better, maybe more

Post by Violet M »

Doreen, it's fantastic to hear that you are doing so well! I agree with you that patience pays off. I am still improving, believe it or not. Several months ago I started an exercise program called "The Firm" and I feel great. I can sit for hours with no problems. So hang in there and maybe a few years from now you will be a landscape contractor. :lol: :lol: You can come and shovel compost for me anytime you want. :lol: :lol:

It's possible your low back problem is related to weak muscles and weak core from having been in bed so long. Please be careful and strengthen these muscles slowly so that you don't set yourself back.

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.
shana
Posts: 121
Joined: Sun Mar 03, 2013 6:24 am

Re: 75 % better, maybe more

Post by shana »

Wow Doreen what journey!!

When I called Hibner's office and found out he won't get on the phone and talk to you befor ur apt I was a bit taken aback. To fly out all the way to AZ w/o knowing if he even can help is crazy to me. Conway seems very nice just soeaking to him on the phone and he has great reviews online.

How long do u have to b on bestest after surgery?

Shana
'08 diagnosed with vulvar vestibulitis
'09 vestibulectomy-Dr. Goldstein-failed
'11 right labral repair and release-Dr. Coleman
2/10-8/12 severe depression, minimal dr appointmen
4 different physical therapists '08-'12 no improvement whatsoever
'13 pudendal nerve blocks-Dr. Chapman
More PT
Dr. Conway officially diagnosed PN/PNE 7/13
9/13 Bilateral hip repair Dr. Coleman
10/13-5/14 Major Depression, no dr appointments
More PT
6/14 Dr. Hibner confirmed diagnosis
Looking for help..hoping for answers
Post Reply

Return to “WELCOME CENTER”