pelvic congestion syndrome and pudendal neuralgia

[pdn]

hi, had an MRI via dr.Potter this summer which showed varioceles impimging of the pudendal nerves in alcocks canal. just had consultation with dr.Fan, estabished expert on pelvic congestion syndrome in boston, who want to do more complete vascular MRI in pelvis-abdomen to see if more extensive pelvic congestion syndrome present which might make her more likely to believe that varoceles in dr. Potter's mri maybe causing the pain which she is septical about. Wondering about if others know about connections between pelvic congestion syndrome and pudendal neuralgia especially in men?? the usual kinds of pain reported in pelvic congestion syndrome don't seem to include perineal also?? thanks,pdn

[shawnmellis]

Hi my Potter MRI also showed Varices bilaterally along the path of the dorsal nerve. I have pain mainly in my perineum from the top of my rectum to right below my scrotum, which is in the area of the area of my dorsal nerve path. Now as far as the varices being the actual cause of the entrapment of the nerves, there have been only a few cases reported where this was the actual cause because they had the varices taken care of instead of decompressing the nerves another way. There have been people who have had Varices and gotten the Varices taken care of and still had the nerve pain, so your entrapment can also cause varices to happen, is what I am saying from talking with people. If your nerve is compressed you can also get varices, because your nerve and blood vessel run right next to each other except the blood vessel is filled with blood like a balloon is filled with water, so if your blood vessel (balloon) is squeezed it will cause enlarged veins just like if you squeeze a balloon filled with water it will cause it to bulge also. I would very much though like to hear the results you get with talking with an expert on Varices to get their opinion as to if they think the varices is the cause, since I am wondering about this myself as being my cause. It may be a higher percentage of people that the Varices is the cause and not the nerve as the cause, but most people do not get the Varices taken care of first so, we do not know what percentage of cases may be caused my the actual Varices itself. There are a few surgeons in the world including Possover in Switzerland that believe that the Varices are the cause of entrapment and compression in some cases. Keep me updated and good luck.
Shawn

[pdn]

hi, just had a vascular mri at brigham's hospital, and was read by experienced expert in pelvic congestion syndrome. she was not impressed with a varices problem and was not impressed with the varices problem identified by dr Potter's mri either. Am going with her opinion, "I've seen alot of pelvic veins"; and will let dr potter's office know about this too., pdn

[Karyn]

Hi PDN,
Sorry if I appear dim, but what do you mean she wasn't impressed? Not cause for alarm or pain? Did she offer anything else?
Also, could you please elaborate:

I've seen alot of pelvic veins"; and will let dr potter's office know about this too.

Best regards,
Karyn

[pdn]

hi, dr. Fan meant by not impressed that they were not enlarged on either mri, and also doubtful that would be causing PN. she definitely did not recommend embolization procedure which she has much experience with; as not a PN dr., she's an interventional radiologist, did not have further recommendation, pdn

[shawnmellis]

Pelvic Congestion syndrom (Varices), same thing as enlarged veins have been proven cause of PNE now.
Although it may or may be rarer than other causes, branches of the Pudendal nerve have been confirmed to be compressed by Varices(enlarged veins) Dr. Aszmann,(Austria) and Dr. Possover M.(Switzerland) have both confirmed this from surgery. Dr. Aszmann has confirmed 2 cases of this occurrence to me personally. Having said that it is best probably to let the nerve surgeons handle the Varices in these areas so close to the nerves and I'm pretty sure that Aszmann ligates and resects it if he finds it to be the problem. I'm not sure how other nerve surgeons would handle the enlarged veins if they found it to be the cause of compression, but it would probably be the same way. Dr. Dellon has also said that if the Varices are the cause of the compression that he can also take care of it during surgery.
I don't think that Aszmann or some other sugeons recommend doing sclerosing of the vein as it may possibly cause more scare tissue, and it is probably best to let them do the surgery in case Varices is not the cause of the compression and the only way to really know for sure is by surgery that we know of so far, since nobody has confirmed they have gotten better by getting the veins taken care of by sclerosing or embolisation alone so far anyways.

Here is a sample of my conversation with Dr. Aszmann
Hi Dr. Aszmann, Have you ever operated on somebody with varices (pelvic congestion) in the pelvis or dorsal branch of pudendal nerve in which case the varices (enlarged veins) was the only cause of the compression of the dorsal branch of the nerve or another nerve in the pelvis? I'm just curious. Thanks

Yes, a man and a woman. Both had the diagnosis “venous congestion in the urogenital diaphragm” in their MRI report. Intraoperatively the woman had varicous veins and a rather large pudendal artery bilaterally. The man had a very bulbous ischiocavernous body on the affected side- the other being almost normal. In men the space available is very tiny, since the canal of the dorsal nerve is anatomically tight already. The woman had tried intravasal application of a foam to obliterate the venous network- to no avail hoewever. I have operated her just before the summer and she is fine so far. The man I have not heard of after a 3 month follow-up phone call.

He also said he has seen enlarged blood vessels causing compression in other areas of the body in his email he sent to me . Here is the rest of his email There are many other nerve compressions caused by blood vessels in other body parts. Some of them even have a name. In the upper extremity the radial nerve can be compressed by prominent vessels- if so these vessels are then called “the leash of Henry” Also in the tarsal tunnel for the tibial nerve this is known cause of nerve entrapment.



Hope this helps everyone to know that there is another possible cause of compression other than ligaments/tendons/scar tissue at leasst in the area of the dorsal branch of the Pudendal Nerve.

[shawnmellis]

Hi everyone, I need to tell you all something VERY important about embolisation and sclerotherapy for Varices in the Pudendal Nerve. Dr. Dellon and Dr. Aszmann do not recommend either of these. They both said they recommend ligation and resection to get completely rid of the Varices because the other methods have proven unsuccessfull. The reason is sclerotherapy can cause more scar tissue and embolisation does not always get completely get rid of the varices and it can stll come back which explains why sometimes these do not work. This is according to Dr. Aszmman and Dr. Dellon. Here are more emails from Aszmann and explanation of this by Aszmann below and the rest of his emails below which I need to share with you all.
Dr. Asmann used to work with Dr. Dellon at Johns Hopkins Hospital and developed with Dr. Dellon the dorsal branch of pudendal nerve decompression. He now does surgery in Austria but speaks perfect english. I have talked with him many times He does not recommend emobolisation or sclerotherapy and neither does Dr. Dellon. Instead he did ligation and resection of the varices. He said, and I agree, that this is the best way to completely get rid of the blood vessels and to make sure they don't come back. I strongly feel that those with varices who get embolisation or another way to fix it by interventional radiologists sometimes are not helped still because you have to have a trained nerve surgeon who can ligate and resect those veins so close to the tiny nerves in the pelvis and right now only Dr. Dellon and Dr. Aszmann can do this. Now, I'm not saying Varices is always the cause, because you can have compression of a nerve by some other problem like scar tissue or other, all I 'm saying is that Varices are now, even though it may be rare for the time being, at least are a proven cause of compression of the pudendal nerve and not just pudendal nerves but many other nerves. I will post below my email from Dr, Aszmann a world renowned nerve decompressioin surgeon who explained it to me below

1st Email Question from me
Hi Dr. Aszmann, Have you ever operated on somebody with varices (pelvic congestion) in the pelvis or dorsal branch of pudendal nerve in which case the varices (enlarged veins) was the only cause of the compression of the dorsal branch of the nerve or another nerve in the pelvis? I'm just curious. Thanks
Dr. Aszmann's response Yes- About two years ago a man from Rome and recently a woman. Both had the diagnosis “venous congestion in the urogenital diaphragm” in their MRI report. Intraoperatively the woman had varicous veins and a rather large pudendal artery bilaterally. The man had a very bulbous ischiocavernous body on the affected side- the other being almost normal. In men the space available is very tiny, since the canal of the dorsal nerve is anatomically tight already. The woman had tried intravasal application of a foam to obliterate the venous network- to no avail hoewever. I have operated her just before the summer and she is fine so far. The man I have not heard of after a 3 month follow-up phone call.
2nd Email from Dr AszmannThere is many other nerve compressions caused by blood vessels in other body parts. Some of them even have a name. In the upper extremity the radial nerve can be compressed by prominent vessels- if so these vessels are then called “the leash of Henry” Also in the tarsal tunnel for the tibial nerve this is known cause of nerve entrapment.

3rd Email Question from MeHi Dr Aszmann I'm curious if you think it would be a good idea to
try embolisation of a varices by dorsal branch of pudendal nerve prior
to surgery? If you are too busy now to have time to read the rest of
this I understand. I know you are very busy and you can read this
later when you are in the mood to read a book instead of an email
LOL Just kidding.

I'm curious why your method of ligatiing and resecting varices seems
to have worked better than embolisation of them or sclerotherapy of
them as far as getting rid of them and improving nerve pain.
According to published reports embolisation or sclerotherapy have not
been too successful at less than 40 percent success.

Do you think ligation and resection is a better way than embolisation
or sclerotherapy for treatment and why do you suppose that most
doctors do not ligate and resect it instead? Is it because they are
near the nerves and most surgeons are poorly trained on surgery around
these nerves or they have never tried it before?

Those with varices here in the USA have tried embolisation or
sclerotherapy with no success yet. It may also be possible that
because in some cases they may have an entrapment causing the varices
and that would also explain the low success rate if they just embolize
it or sclerose it instead of decompressing the nerve along side of the
vein.

I also heard sclerotherapy can cause scar tissue around the nerve.
Does ligation and resection get rid of the problem vein better because
you can see where the vein is compressing the nerve in surgery where
as in embolisation or sclerotherapy you can not see which parts of the
vein are compressing the actual nerves? Just wanted some food for
thought because the truth is somewhere out there and anything is
possible.

I help a lot of patients on the pudendalhope.com website and other
support groups on Faceboolk every day and I am the leader of a large
Facebook PNE support group and email and talk with PNE patients all
the time. The patients I know with PNE have been talking much more
about varices recently now since there have been an increase in
patients seeing Varices in their pudendal nerve area recently over the
past year from their Dr Potter MRIs since she is probably doing more
pudendal mris now because of her popularity here. She now takes much
longer to get to see her because she is so busy with PNE patients.Take
care.

Dr. Aszmann's email response:
I do not think it is a good idea because so far it has not provided good
results. Surgical resection gets rid of the entire vascular network and it
Is virtually impossible that these will return. In men I do not have so
many postsclerotic PNE patients, seems to be more present in female but -
and there it is to no avail.

OCA