MRI shows Varices in Alcock's Canal - vein embolization?

[Ray2575]

Hello,

I am a new member (11/2015) and this is my first post.

My urologist spoke with Dr. Potter at HSS to discuss the results of my MRI performed there, and he informed me that she had not observed my condition before and suggested that I reach out Dr. Kim at BMC for a vein embolization procedure to treat varices in Alcock's canal.

My urologist was unable to locate any medical research or reference to any procedures being done on this. He suggested I follow-up with Dr. Kim and seek other opinions on what to do as well. I have written to Dr. Kim with no response as of yet.

My GP isn't convinced that the varices can be compressing the nerves and wants to know the underlying reason for the varices before doing any procedure.

I would appreciate any advice on treating varices in Alcock's Canal. I am lost and can't really find any information specific to what I have.

I am a healthy, fit, male cyclist (no longer) with no other health issues except for symptoms associated with pudendal nerve compression. Specifically, extreme burning in the genitals, pain from perineum to rectum that makes me unable to sit and burning in the soles of feet when I stand too long (I am told it is related to S2 nerve root - the same one that the pudendal nerve comes from). I have had a lumbar MRI as well and the back doctor said he can confidently rule out my back as any source of the issues I am having.

Specifically, the impression portion of my MRI report reads:

IMPRESSION: MRI of the pelvis demonstrates very prominent varices in Alcock's canal, markedly compressing both pudendal nerves, with edema in the epineurium of both pudendal nerves in the posterior margin of Alcock's canal. There is no asymmetric thickening of the sacrospinous or sacrotuberous ligaments but there is marked asymmetric deviation of the coccyx to the left with scarring of the anococcygeal ligament. Note is made of varices extending to the superficial transverse perineal muscle but not surrounding the dorsal nerves to the penis.

Thank you so much if anybody can help me.

[Violet M]

Hi Ray,

Welcome to the forum. I have some comments to make in response to your post but I would like to take some time answering your questions. I will try to get back to you tomorrow when I have some time to make a well thought out response.

Violet

[RJR]

Ray,
Your situation and symptoms are very similar to what I experienced (including burning feet). I too had a large varix compressing the R pudendal neve. Dr Potter noted this in my pre-surgery MRI, and noted that it had been fixed as a result of my TG surgery in a post surgery MRI. In my case the varix was formed as a result of compression of the nerve by my right STL (scarred and deformed from cycling) - with the real culprit for my symptoms being the STL. So I wonder if there is an underlying cause to your varix.

While MRIs are not a gold standard for diagnosis, they provide valuable indications. And in my case Dr Potter was 100% correct, as verified at surgery. I wonder if a well-placed nerve block could help you further.

Dr Jan Fritz, at Johns Hopkins, and who trained under Dr Potter, does MRI-guided nerve blocks. With him you get not only the block, but also a detailed MRI that may provide further information.

You have come to the right place for support and information. Violet is highly knowledgeable and wise, and I look forward to her reply. Keep us posted on your next steps and progress.
Best,
Bob

[Ray2575]

Thank you Bob and Violet. It is nice to know other people are out there and care enough to reply.

I will look into Dr. Fritz. I am still trying to figure out what the right progression of steps is. I would hate to do a vein embolization (destroys the vein) if that is not the underlying problem.

I have also been referred to a Dr. Elkwood, surgeon in NJ, but I do not see his name mentioned on this forum.

Ray

[Violet M]

Hello Ray,

First let me suggest arguments for the "pudendal neuralgia or nerve entrapment caused by enlarged varices" theory.

Dr. Possover's publication describing varices causing entrapment:
http://www.pudendalhope.info/forum/view ... ces#p15738

Shawn's posts reporting what some of the physicians have told him:

http://www.pudendalhope.info/forum/view ... ver#p19264
http://www.pudendalhope.info/forum/view ... ces#p17682

_____________________________________________________________________________________________________________

On the opposite side of the argument.....

Pelvis Stressly's post on the subject:

http://www.pudendalhope.info/forum/view ... ces#p14220

I have seen or heard of reports from some of Dr. Filler's MRN's showing that the blood vessels are enlarged due to compression by the vessels at the ST/SS ligamental grip causing a back-up of blood in those vessels causing them to be enlarged. Since the nerve typically follows the same course as the blood vessels, the conclusion was that there was a possible ST/SS ligament entrapment that caused the enlarged blood vessels as well as the pudendal neuralgia. In your case, since the enlarged veins are distal to the ligamental grip, you could consider whether they are enlarged due to blood pooling in the vessels due to an entrapment. I have no idea if this is the case but it is something to consider. This sort of follows the same theory Dr. Bautrant has of using dopplar ultrasound to see how well blood is flowing through the pudendal blood vessels at the ligamental grip.

A number of people have posted their Potter MRI reports on the forum with their reports showing varices. I don't recall any cases of someone having successful relief of pudendal neuralgia from having pudendal blood vessel embolization. You could do a search on the forum using the word "varices" or "embolization" to see what other people have posted on this subject. There are a number of discussions about it.

So, I guess one question is whether the enlarged veins compressing the nerve might be causing your pain, or could the nerves and blood vessels be compressed between ligaments lead to a backflow in blood with dilated veins and a compressed nerve? Or is something completely going on? It's tough to figure these things out but I just wanted to give you all of this information to consider. For all we know, a person having no pain at all could have an MRI showing the exact same type of "pathology" that yours is. I don't know of any studies that have been done linking pelvic pain to pelvic varices.

I've heard of Dr. Elkwood but I don't know much about him. Keep in mind if you go to a surgeon, you are going to get a surgeon's viewpoint. Many people pursue conservative therapies such as PT before opting for any type of surgery, because once the procedure is done, there is no taking it back and with any type of invasive procedure there is the risk of getting worse.

Sorry, I haven't really answered your question fully. Hopefully I haven't caused further confusion. I just think it's important to look at things from all angles before making a decision and that when you do make a decision it is an educated decision, hopefully.

All the best,

Violet

[Ray2575]

Thank you Violet. I am traveling but will check into the links you provided. I am currently doing PT with a wonderful pelvic therapist. I am frustrated that I was cycling to stay healthy and this is the result. The MRI seems to say my ligaments are fine and that is partly what is confusing me.

My GP is a smart Harvard Medical School doctor and he told me to be careful with PN. He really wants to know the cause of the varices first before I do anything. He said to be cautious because there are a lot of people preying on people with unbearable PN pain.

I really don't know what to do next, but appreciate the guidance.

Dr. Elkwood wanted me to get a bilateral pudendal EMG and then CT guided nerve block in NJ before I saw him again. I have not done those yet.

I will reply more shortly. Thanks. Ray.

[SLR]

I just wanted to post that I had a pelvic vain embolization done about 2 years ago. They said my pudendal veins were enormous. They used 20 coils and coiled bilateral internal iliacs, bilateral pudendals and ovarian veins. The embolization had no effect on my pain at all. I am currently in process of scheduling a decompression surgery after 3 1/2 years of failed nerve block, botox, multiple tries with multiple PT's, a hysterectomey, and a pelvic vein embolization. I will post an update on progress after I have the decompression surgery done.

[April]

Hi SLR,

I'm so sorry to hear that that the vein embolization didn't do anything. I waited the same length of time to have my decompression surgery. I scheduled it 3.75 years after the pain started and had it at 4 years. I had it with Hibner, and it did reduce my pain considerably. Yes, keep us posted.

Take care,
April

[Violet M]

SLR,

Wishing you the best with your surgery. Sending hugs and prayers.

Violet