Health Organization for Pudendal Education

Hi, My Potter MRI results also showed Varices (enlarged veins) bilaterally (both left side and right side of pelvis) along the dorsal branch of my pudendal nerve. I have read a couple cases where Varices are the actual cause of the nerve compression. One is the case posted by Violet from the Dr. Possover in Switzerland who stated tha all 6 patients with vascular entrapment of pelvic nerves achieved complete relief. Here is the link to Violet's thread on this here http://pudendalhope.org/forum/viewtopic.php?f=48&t=1681 There is another case I found in France where a 37 year old woman had compression due to Varices and got better with embolisation of them. Here is the link here http://www.ncbi.nlm.nih....gov/pmc/articles/PMC2117410/ Now, I'm not saying that I know for sure if my Varices are the cause of compression or a symptom of the compresssion of the nerve by another cause like scar tissue, but what I am saying is that there is proof of cases where Varices do cause compression of the pudendal nerve or its branches. However, it seems as if this may or may not be the case for the majority of patients because surgeons seem to usually note that the compression can also have Varices. There is no real statistical evidence stating the exact relationship in all surgeries as to cases where there is pudendal entrapment if the Varices is in fact not the cause in all cases, so it can not be ruled out as a possible cause. In fact, I emailed my Potter MRI to Dr. Aszmann, one of the best dorsal nerve decompression surgeons in the world and he said he thinks the cause of my Dorsal branch of my Pudendal Nerve compression is from Prominent Varices on both my right and left side. My worst pain is right below my scrotal area of my perineum all the way accross it but mostly in the upper middle area of perineum. Here is the email he sent to me below:

Allright- just had a look into your MRI with my radiologist. Excellent images, as ususal from Hollis Potter. The sequences show impressive varices at the base of the penis reaching into the distal canal on both sides! The nerve itself is difficult to visualize, since the signal of the veins is so intense. However, the ischiocavernous bodies and pubic bone are well delineated so that one can see the canal where the nerve is very well. So I suppose that the varices inflict continuous pressure on the nerve at the distal canal. That explains also why the problems arise when you do yardwork or other activities, since then the veins automatically bulge forward with quite some pressure. This phenomenon is known in this region. In some patients this “venous congestion” is even more prominent and extends all the way into the small pelvis. Fortunately with you this stops at the urogenital diaphragm. The vascular anatomy in the ischiorectal fossa and further up is normal!

So I am convinced that ligation and resection of these veins to decompress the nerve there will do the job.

Best regards,

shawnmellis : How did you email you Potter MRI images to Dr. Aszmann? The file size is too large for me to send via email. Thanks!

HELP! Can someone get back to me today on this please and tell me how specific the MRI script for Dr. Potter should be? I was told by her asst. that it should be as specific as possible and have just found out that all mine says is " MRI WITH CONTRAST TO RULE OUT PUDENDAL NERVE ENTRAPMENT AND LABRAL HIP TEAR." I'm going up there tomorrow for the tests and am now very concerned about the vagueness of the order for these MRIs. No mention of the dorsal nerve or any other nerve. It will not be an easy trip so I don't want it to be in vain. I've been trying for 3 weeks to get a copy of this script and between my own gyno. and the dr. that ordered the MRI, it's been like a circus and so I just found out today what he ordered.

I would appreciate if anyone can comment on this . I don't understand why the script would be so vague when this dr. is so familiar with HSS and Dr. Potter. If her asst. knows about being so specific, I don't know why he wouldn't.

Very frustrated to say the least.

Bamboo

Bamboo,

Here's the link on this website to the specific MRI instructions for Dr. Potter http://www.pudendalhope.org/node/58#Potter

Thanks for your response Faith. I don't know why but I do not receive notification of posts to subjects that I have been following or posting to so I found your reply by accident.

I went up to have the MRIs done and was very disappointed to be told when they were finished that I would not be seeing Dr. Potter. I had been told two days before that I would be able to see her and even when I checked in, and then that it wouldn't be possible. I don't know if it was because they were running an hour late or if she just wasn't there but I have to say I felt cheated. I know they don't guarantee that you will be able to talk with her but it was a hard trip, with no fun excursions on the side able to be tolerated. 7 hours of standing to get up and back, and that was just on the train. I have no idea if I will hear from her or the dr. who ordered the tests. It just seems like it's one disappointment after another and I should know better after so many years of letdowns by the medical field.

Bamboo

bamboo, if you want to get email notification of posts in a topic, look at the bottom left of your screen, where it says Subscribe Topic, with a tick next to it.

You need to click on Subscribe Topic.

When you've done this, you'll get an onscreen acknowledgement, and then the screen goes back to the topic again - and you'll see that now it gives you the option to Unsubscribe Topic, with a little cross next to it.

Bamboo,

I called the MRI department 1 or 2 days after my MRI and they faxed me the report. I think I may have had to fax a form back to them for a Medical Release, but he printed it promptly and faxed it to me that day.

caeri

Calluna and Cari - thank you both for your responses. I checked and I did have the box checked for responses so not sure why I am still not getting the notifications.

Cari - the day I had my MRIs done, they told me if I wanted a copy sent to my home I should sign a form at the front desk when I went out. So I did do that - but I'm not sure that I'll understand a lot of the report, judging from the reports that were posted on here. It was a shock to find out that if you want a copy of your MRI, you need to pay $50 for a CD. Guess I'm spoiled, as when I get an MRI done locally, they automatically give you a copy before you leave.

Bamboo

Bamboo,

I say you call Monday and get it faxed to you! I could not wait to see what was said in it. You can scan it in and we will help you read it.

I was shocked at the price of the CD too. They are also free at my hospital. Sometimes I think we desperate, answer-seekers get taken advantage of.

cari

bamboo wrote:Calluna and Cari - thank you both for your responses. I checked and I did have the box checked for responses so not sure why I am still not getting the notifications.

Nope - if you are subscribed for email notification - then you will see at the bottom of the screen, it will say Unsubscribe topic, and there will be a little cross, not a check or tick.

If you see a tick or check next to Subscribe topic - you need to click on Subscribe topic.

Look also on your User Control Panel - select Profile - then Account settings - and make sure you have the right email address there.

I do hope this helps.