Surgery after 8 years

[PN-SufferVT]

Does anyone have Dr. Filler's email?

[ezer]

Does anyone have Dr. Filler's email?

I don't believe Dr.Filler publishes his own email. You can contact his office via his website:
http://www.nervemed.com

[ezer]

Well, I am way overdue for an update. The short answer is that surgery did not help me and probably made me slightly worse.
I initially went with Dr.Filler because of the recommendation of a patient of his. Yes, I perfectly knew that he did not get great results when I searched the archives of pudendal.info but I also knew that he helped runners in particular get better.
I was also led to believe that he had significantly improved his PN methodology in recent years. Dr.Filler's peer reviewed 2009 paper convinced me further. One problem I had with the paper is that Dr.Filler seems to find the majority of people entrapped at the alcock's canal which contradicts what other PN doctors say (for example Dr.Antolak says that 90% of patients are entrapped by the ligaments). I unfortunately pushed aside this discrepancy and proceeded with the surgery.

To recap, The nerve blocks did not work very well but the piriformis spasm that ensued gave Dr.Filler a clue apparently that it was okay to pursue with surgery.
The reason why the surgery failed is pretty straightforward to me: Dr.Filler has 3 different points of entry depending on what he sees on his MRN. It seems clear to me now and talking to my doctor that from the TG entry point that was used, there is no way he could have decompressed the pudendal nerve in its entire course.
I had many questions for Dr.Filler during my post op visit and I understand that he did not decompress my pudendal nerve between the ligaments for example as his MRN did not show anything suspect there. He then suggested we do a redo surgery to address other points of entrapment starting with the alcock's canal.
So my take is that he probably can get the entire nerve eventually but it may take multiple attempts.
I do not think it is a good idea to go for several more attempts so I would not consider a redo (well more like a continuation in this case) even if I had an unlimited budget.

Last week, I convinced an "interventional pain specialist" to give me a guided nerve block at the ligaments and I had the surprise to have my pain reduced by 50% for several hours.
So, yes, it means that I am still probably entrapped. Clearly it is frustrating to have gone through this useless exercise.
I am therefore looking into the traditional Nantes TG approach.

[Karyn]

Oh, Ezer. Thank you for posting your update. I'm so very sorry things didn't work out better for you with Dr. Filler. I appreciate your candor and honesty about how you came to your decisions to have surgery with him. I don't think there's anyone here who can't relate to the thought process involved when making such decisions. Meaning, what information we dimiss and what information we cling to in an effort maintain a comfortable level of hope.

One problem I had with the paper is that Dr.Filler seems to find the majority of people entrapped at the alcock's canal which contradicts what other PN doctors say (for example Dr.Antolak says that 90% of patients are entrapped by the ligaments). I unfortunately pushed aside this discrepancy and proceeded with the surgery.

I wouldn't beat myself up over this one, Ezer. Based on what I've been reading about other PN'ers entrapments, I'm beginning to think that you really can't attach a percentage to where the majority of people are entrapped.

The reason why the surgery failed is pretty straightforward to me: Dr.Filler has 3 different points of entry depending on what he sees on his MRN. It seems clear to me now and talking to my doctor that from the TG entry point that was used, there is no way he could have decompressed the pudendal nerve in its entire course.

Am I understanding you correctly that Dr. Filler only does the decompression in areas that appear problematic on his MRN? If so, how arrogant and negligent!
So, what exactly did he decompress??? I admire your thought process with taking it to the next level about WHY your surgery wasn't successful. It appears that a good deal of folks who's surgery was deemed a failure are in fact entrapped in other areas that their surgical approach was unable to access.

from the TG entry point that was used, there is no way he could have decompressed the pudendal nerve in its entire course.

I don't understand. Are there various "TG entry points"? I was under the impression that approach gave the surgeon access to the entire main nerve; which would include the ligaments and the AC.

I understand that he did not decompress my pudendal nerve between the ligaments for example as his MRN did not show anything suspect there. He then suggested we do a redo surgery to address other points of entrapment starting with the alcock's canal.

Again, I'm baffled. I don't understand why he wouldn't check the entire course of the nerve. Personally, I find it kinda scary as to the extent he relies on this machine, as opposed to the flesh and blood he's got laid out before him.

I do not think it is a good idea to go for several more attempts so I would not consider a redo (well more like a continuation in this case) even if I had an unlimited budget.

I agree.

Clearly it is frustrating to have gone through this useless exercise.

Well, I can certainly understand why you would feel that way. But I wish you would cut yourself some slack for this one, too. You had faith in someone who came across as confident and knowledgeable about your situation. How could you have possibly known he wouldn't address all of your areas of entrapment? You didn't do anything wrong or make any hasty decisions. He let you down.

I am therefore looking into the traditional Nantes TG approach.

Ezer, I'm sorry you're facing more surgery but am so happy you're not giving up! Do you think you'll go with Houston or out of the country? Have you had any consultations yet?
I wish you the very best with whoever you decide to go with and offer my full support with your full recovery.
Warm regards,
Karyn

[A's Mommy]

Ezer,

I second everything Karyn said. My heart goes out to you and many other friends I have made that have gone to the same doctor with sub-par results and are now facing redos and having to make incredibly difficult (and expensive, at times) choices.

I am glad you are not giving up. Have you considered Dr. Dellon as he is new coming onto the scene? I know you said the traditional Nantes approach --- would you go for Houston or look into what the Bristol team is doing since they follow the Nantes team to a T (seemingly --- I could be wrong about this, though).

Regardless, we are with you on this journey and unfortunately remain the pioneers of this surgery, no matter what anyone says. In ten years (or sooner), I pray we can all have a reunion somewhere, SITTING, enjoying each other's company, and resting in the fact that that our horrors will be over.

A's Mommy

[HerMajesty]

Thank you for the update ezer, I am very sorry that you are not feeling better
My entry into the PN Board was because I got the MRN and had been led to believe that Dr. Filler could identify an exact area of entrapment on the MRN and then do "spot surgery" to correct it with a remarkable success rate. He suggests as much in all his promotional material.
It was the old board so I can't go back and see who it was, but I was forever grateful to whoever brought up the fact that if you are going to go through all that, why not have the whole nerve decompressed and be done with it? This brought me to the point of doing more research on Dr. Filler's methods and results and I was not crazy about what I found out. I was particularly not crazy about being led to believe that the MRN would show any scar tissue; but then in my post-MRN phone consult, when his NP was trying to sell me expensive piriformis injections, I said, "so you are telling me there is no scar tissue", and she responded by saying they could figure that out by observing how the steroid infiltrated through the muscle during the injections. Really? I thought that was what the MRN was for! If the MRN is that "iffy" on finding scar tissue entrapments, how can Dr. Filler expect success doing only "spot surgery" based on MRN results?
I definitely do support the philosophy that if you are going to have the nerve decompressed, do the whole thing. There is no real proof out there that ANY imaging is going to be accurate enough to allow "spot surgery". As I am sure you know ezer from the whole big ugly ligament debate, my personal opinion is decompress the whole nerve but preserve the sacrotuberous ligament. But you seem to read carefully and have all the information to make your own decision.
Again I'm sorry your not doing better and hope there is a resolution for you soon.

[Karyn]

I definitely do support the philosophy that if you are going to have the nerve decompressed, do the whole thing.

I couldn't agree with you more, HM. I really do believe that most, but NOT all, of these surgeries are deemed a failure because the entire nerve - including it's branches are not being fully decompressed. For instance, I don't think it's reasonable for me to expect a full recovery from the TG surgery I'm about to undergo. Why? Because I still have that dorsal branch entrapment and I'm aware it won't be addressed with TG decompression. Does that mean my TG surgery will be a failure? I don't think so. I'm hoping for at least some improvement with my current symptoms, realizing this won't be "my cure" because I have still have entrapments in other areas not accessible by the TG approach. I've made peace with this. I don't want mulitple surgeries. Who does? But I think we should all be cognizant of the limitations of each surgical approach and be realistic regarding the outcomes. In Ezers case, I think Filler was blatantly negligent. IMO, Ezer could've had a better outcome if Fillers ego didn't get in the way.

[HerMajesty]

Having consulted with Dr. Filler myself I don't like to bash the guy, I think he has good intentions but he has some fixed false ideas in his mind. Like if you, like me, are one of the 20% of the population who has a bipartite piriformis,your nerve must be entrapped there.
He is somewhat formulaic in his thinking which is why he helps some people, because they fit his formula. I'm not really comfortable calling him negligent or egotistical or anything, but maybe inflexible. I don't really think ezer made a bad choice, just a choice that did not work out for him...most of us with chronic pelvic pain have been down that road a few times.

[KRISG]

Hi Ezer,

I'm sorry you have to go through this ...again ..

I guess there are only two kinds of doctors .
The ones that helped you and the ones that didn't .. in the end nothing else counts to a particular patient ..

I'm sure you help everyone that comes behind you with your honest testimony ..
In the end not only the positive make up the whole picture of what to expect when going into surgery

Said that , there is only one way to get out of this and that is keep trying other things .
I can only wish you all the luck in the world with your future attempts and keep us informed !!

I have one question though . Why do you think that if you had a pain reduction with the block you will be still entrapped ?

Keep your hopes up and thanks for your post !

Kris

[Charlie]

Filler is a strange one as his results have been peer reviewed and published with his studies showing impressive results. I guess what this shows is the weakness of Peer reviewed studies. Filler is clearly not getting the results he claims.

Regarding the MRN I had one done but after speaking with other Drs the verdict is that it seems to be a gimmick and not helpful for a diagnosis.