Re: Getting a diagnosis
Posted: Sat Feb 05, 2011 12:15 am
No prob. SG. And I'm not sure re. women patients...he hasn't mentioned any to me but that certainly doesn't mean there aren't any.
Health Organization for Pudendal Education
www.pudendalhope.org
https://mail.pudendalhope.info/forum/
Getting a diagnosis
Page 6 of 9
Re: Getting a diagnosis
Posted: Sat Feb 05, 2011 5:20 am
Thanks PS! Also sent you a PM!
Re: Getting a diagnosis
Posted: Sat Feb 05, 2011 11:32 am
Hi Maddiebean I have sent you a PM
Re: RESULTS AFTER YOUR SURGERY WITH dR hibner
Posted: Wed Feb 29, 2012 3:38 pm
IRIS wrote:AliPasha1 wrote:Hi Iris,
I had my surgery with Dr. Eric Bautrant about a year ago and haven't sen any improve yet.I had my 3 Tesla MRI done by Dr. Potter and she was able to visualize the whole path of the Pudendal Nerve.My PN is still entrapped in the Sacrotuberous ligament as well as the Alcock's Canal.In addition,the dorsal distal branch of the Penis/Clitoris is also entrapped in scar tissue.
I am not expecting any improvements from Dr. Bautrant's surgery anymore and I am scheduled to have redo surgery with Dr. Hibner on 25th,April,2011.
It is indeed true Dr. Potter at HSS in NYC can visualize the PN Nerve.
Regards,
Ali
Hi AliPasha1
I got in touch with you about a year ago as you had surgery with Dr Bautrant with no results which is also my case, and you were supposed to redo surgery with Dr. Hibner on 25th, April11.
I am the French woman who asked you several questions about the 3 MRI diagnosis.
How do you feel now after almost a year away from the surgery. Have you completely recovered ?
I go to Nantes for new examinations and also I tested Ketamine but nothing helps me and I am desesparate.
If you have goood news, please keep me informed on your progress and if you have been able to work again.
Sincerely
Your french friend Iris
I look forward to your reply
Thank you AliPasha for your prompt reply. It is great and very kind of you.
Another question : do you know anyone who had surgery with Dr Hibner further to this 3 T IRM and did he or she get goood results ?
Regards
Iris
Re: Getting a diagnosis
Posted: Sat Jun 09, 2012 10:15 pm
Hi - I'm new to all this, but have just learned from my chiropractor that I most probably have PN. Devastated!! Planning to make an appointment with my doctor, but since they refused to see me years ago with a back problem (and I rarely visit the Doctor) - I don't hold out much hope of being listened to. As my symptoms are not massive at the moment I would really like to get to grips with this before they get worse. I have 3 possible flares in the last 12 months - the last being 2 weeks ago when my chiro became concerned when I explained my symptoms. The other two were about a year ago and I sort of ignored them and put it down to the "menopause".
I live in Wiltshire and I guess I am wondering whether to bother with the Dr or just arrange a private consult with the Bristol Team and cut out all the "it might be this, or that".
Does anyone have any thoughts or suggestions.
Polly
I live in Wiltshire and I guess I am wondering whether to bother with the Dr or just arrange a private consult with the Bristol Team and cut out all the "it might be this, or that".
Does anyone have any thoughts or suggestions.
Polly
Re: Getting a diagnosis
Posted: Sat Jun 09, 2012 11:20 pm
Hi Polly,
Welcome
Good for your Chiro first of all being aware of PN. That's always good to know. I think that you will have to have a GP referral even for a private consult these days. Is that right? Should know shouldn't I
I know that is the way I went with it anyway. This didn't used to be the case but have an idea that it is now.
I do think that it's a good idea to run the Chiro's suspicions past your GP in any case although I can understand your reticence, especially if you haven't had much support in the past. Can you choose a different GP at your practise? I know only too well how necessary it is having a supportive GP (I haven't) and the only time I made any headway was when mine was on long term sick leave, her stand in was wonderful, but she left unfortunately.
Many people have had a good deal of help from their GP's so don't let my experience colour your views.
If you don't get good feedback tho' please ditch them sooner rather than later,to save time and anxiety.
If you take a print out of PN symptoms from the home page and match your own symptoms to them to show your GP, this may help along with your chiro's findings of course. I guess you will just have to see what the attitude is and take it from there.
Good luck with it all.
I take it that there was no defining moment or incident that triggered your symptoms if you were putting down to the menopause? That could be a good sign in that conservative treatments may be successful. Hope so
Take care,
Helen
Welcome
Good for your Chiro first of all being aware of PN. That's always good to know. I think that you will have to have a GP referral even for a private consult these days. Is that right? Should know shouldn't I
I know that is the way I went with it anyway. This didn't used to be the case but have an idea that it is now.I do think that it's a good idea to run the Chiro's suspicions past your GP in any case although I can understand your reticence, especially if you haven't had much support in the past. Can you choose a different GP at your practise? I know only too well how necessary it is having a supportive GP (I haven't) and the only time I made any headway was when mine was on long term sick leave, her stand in was wonderful, but she left unfortunately.
Many people have had a good deal of help from their GP's so don't let my experience colour your views.
If you don't get good feedback tho' please ditch them sooner rather than later,to save time and anxiety.
If you take a print out of PN symptoms from the home page and match your own symptoms to them to show your GP, this may help along with your chiro's findings of course. I guess you will just have to see what the attitude is and take it from there.
Good luck with it all.
I take it that there was no defining moment or incident that triggered your symptoms if you were putting down to the menopause? That could be a good sign in that conservative treatments may be successful. Hope so
Take care,
Helen
Re: Getting a diagnosis
Posted: Sun Jun 10, 2012 9:50 am
Hi Helen
Thanks so much for responding to my post. I have checked and I can go directly to the Bristol Team privately and if they feel it is necessary they will request a GP referral so that it then goes NHS. The problem with our GP practice isn't so much the doctor's, but actually being able to get an appointment. I am going to ask my chiro what he thinks this Friday. GP's tend to think chiro's come from the dark side lol.
The only conclusion I can come to regarding this progression to PN is that I did injure my back some years ago - although merely by using the hoover or digging the garden. Chiro said it was a twist injury from being slightly bent over at the time (hubby now does the hoovering!!) Chiro has been treating this for years, but in the last 12 months I have had problems with cramping in the hips at night and the pain waking me when turning over in bed. I didn't see my chiro for 12 months (went back this January) because of financial restrictions, but was in back pain for that whole year (S3 inflammation). Having gone back in January he has been treating the piriformis muscle on that side which is totally in spasm. Unable to do a realistic supine leg raise on left side, totally locks up and refuses to move - although right side can do 90 degrees with no problems. Again will talk with chiro about this on Friday. I understand there is some connection between this muscle and pressure on the PN. Looking back over the last 12 months I can identify that I had some PN symptoms about a year ago - 2 over about a 3 month period. But, now I know the symptoms I can definitely identify with them. Thankfully only slight hypersensitivity for one/two days on each occasion, although bladder sometimes irritable on some days - so this is probably attributable to PN as well, rather than menopause.
Really hoping that I can nip this in the bud before it progresses as I have an office job which I really don't want to give up - even if I have to convert my workstation a bit so I can stand some of the time. Currently using an inflatable active cushion which has a space in the middle (good butt workout) - this is more comfortable and I can carry it around and use it at home and in the car too - quite interesting experience when going round corners!!
Thank again Helen - it's good to have support and hear the experience of others.
Pols xx
Thanks so much for responding to my post. I have checked and I can go directly to the Bristol Team privately and if they feel it is necessary they will request a GP referral so that it then goes NHS. The problem with our GP practice isn't so much the doctor's, but actually being able to get an appointment. I am going to ask my chiro what he thinks this Friday. GP's tend to think chiro's come from the dark side lol.
The only conclusion I can come to regarding this progression to PN is that I did injure my back some years ago - although merely by using the hoover or digging the garden. Chiro said it was a twist injury from being slightly bent over at the time (hubby now does the hoovering!!) Chiro has been treating this for years, but in the last 12 months I have had problems with cramping in the hips at night and the pain waking me when turning over in bed. I didn't see my chiro for 12 months (went back this January) because of financial restrictions, but was in back pain for that whole year (S3 inflammation). Having gone back in January he has been treating the piriformis muscle on that side which is totally in spasm. Unable to do a realistic supine leg raise on left side, totally locks up and refuses to move - although right side can do 90 degrees with no problems. Again will talk with chiro about this on Friday. I understand there is some connection between this muscle and pressure on the PN. Looking back over the last 12 months I can identify that I had some PN symptoms about a year ago - 2 over about a 3 month period. But, now I know the symptoms I can definitely identify with them. Thankfully only slight hypersensitivity for one/two days on each occasion, although bladder sometimes irritable on some days - so this is probably attributable to PN as well, rather than menopause.
Really hoping that I can nip this in the bud before it progresses as I have an office job which I really don't want to give up - even if I have to convert my workstation a bit so I can stand some of the time. Currently using an inflatable active cushion which has a space in the middle (good butt workout) - this is more comfortable and I can carry it around and use it at home and in the car too - quite interesting experience when going round corners!!
Thank again Helen - it's good to have support and hear the experience of others.
Pols xx
Re: Getting a diagnosis
Posted: Sun Jun 10, 2012 11:00 am
We sound fairly similar, somehow that always seems to help So glad that my nonsupportive GP suspicions are unfounded
I would get your private appointment (was around £200 and would doubt it has increased) asap and take it from there. Dr G's private secretary is so nice too. One thing to remember is wear matching underwear. . . . I forgot (as if it matters!) but that was not as bad as when I had a thong on (UGH) at a long ago back appointment and was asked to touch my toes , poor consultant. 
So glad that my nonsupportive GP suspicions are unfounded I would get your private appointment (was around £200 and would doubt it has increased) asap and take it from there. Dr G's private secretary is so nice too. One thing to remember is wear matching underwear. . . . I forgot
(as if it matters!) but that was not as bad as when I had a thong on (UGH) at a long ago back appointment and was asked to touch my toes , poor consultant. Re: Getting a diagnosis
Posted: Sun Jun 10, 2012 11:13 am
Hahahaha!! love it! Yes Helen we do sound very similar xxxx Polly
Re: Getting a diagnosis
Posted: Sun Jun 10, 2012 1:41 pm
Hello Polly - welcome from me too.
I too am in Wiltshire, I am one of Dr Greenslade's patients - you will like him I am sure, he is a nice kind man who listens carefully, and he is very easy to talk to. I've been helped a lot by the surgery that he recommended, I do still have PN though and manage the pain by avoiding triggers. After this next lot of surgery is out of the way I am due to go back to Dr G to discuss pain management.
If you ask your GP for a referral, which is what I did, the waiting time seems to be about 10 weeks. I've had all my treatment through the NHS, I am lucky to have a very supportive GP, in fact all the GPs I have seen at the practice have been really helpful.
For us, it was not possible to go privately, too expensive. We could have gone for the initial appointment privately, could have managed that, but it didn't seem worthwhile as we'd have then had to go into the queue for any treatment/tests, so we thougt we might as well get the wait over and done with.
I do think it is a good idea to see someone who has an interest in PN, and if you live an hour away from Bristol then that would be Dr G.
Am interested to hear your comments about being unable to raise one leg, is this indicative of piriformis problems? - I ask because nowadays I cannot raise my right leg at all if I am lying on my back, going up a high step means I need to physically lift the leg with both hands. No idea why I have this, and it doesn't really bother me - no pain or numbness in the leg or hip - but I just wondered.
I too am in Wiltshire, I am one of Dr Greenslade's patients - you will like him I am sure, he is a nice kind man who listens carefully, and he is very easy to talk to. I've been helped a lot by the surgery that he recommended, I do still have PN though and manage the pain by avoiding triggers. After this next lot of surgery is out of the way I am due to go back to Dr G to discuss pain management.
If you ask your GP for a referral, which is what I did, the waiting time seems to be about 10 weeks. I've had all my treatment through the NHS, I am lucky to have a very supportive GP, in fact all the GPs I have seen at the practice have been really helpful.
For us, it was not possible to go privately, too expensive. We could have gone for the initial appointment privately, could have managed that, but it didn't seem worthwhile as we'd have then had to go into the queue for any treatment/tests, so we thougt we might as well get the wait over and done with.
I do think it is a good idea to see someone who has an interest in PN, and if you live an hour away from Bristol then that would be Dr G.
Am interested to hear your comments about being unable to raise one leg, is this indicative of piriformis problems? - I ask because nowadays I cannot raise my right leg at all if I am lying on my back, going up a high step means I need to physically lift the leg with both hands. No idea why I have this, and it doesn't really bother me - no pain or numbness in the leg or hip - but I just wondered.