PNE or PFCNE?

[Banderson]

I recently discovered this site and have learned a lot. Thanks to all of you who contribute to it.
Here is my history and a question about next steps.
On Aug. 2nd 2009 I arrived late for my first Over 50 soccer game and had no time to warm up. I pulled something on a hard run, felt like my hamstring. Over the following months I recovered between games but pain at inner bottom of right butt cheek came back after most games. After 3 months of rest the pain came back immediately with vigorous activity.
Pain was diagnosed as hamstring tendonosis for next 2.5 yrs. PT, rest, anti-inflamatories, massage, steroid at upper insertion, and two PRP injections did not help my situation significantly. Pain got worse over time, to the point of not being able to walk or go up stairs w/o pain.
In Feb. 2012 a PT examined me and said I have PNE. Blocks in two locations along PN did not relieve pain. Pain worsened significantly after PT pressed hard on ischial tuberosity. Cannot now sit w/o pain. I emailed Dr. Dellon my history and his diagnosis is entrapped posterior femoral cutaneous nerve (PFC). 90% of pain was relived by block of PFC on Thursday and if steroid does not help Dellon is recommending surgical removal of PFC. I do not want to do surgery without a more definitive diagnosis. What's next? Should I get a 3T MRI or an MRN? I live in Seattle and see that there are hospitals here with 3T MRI machines.
Which doctor should I see? I see mostly positive comments about Dr. Filler and Dr. Hibner. I see too many negative comments about Dellon here and elsewhere to try him.

Thanks,
Brian

[merrie]

Brian -

Some people were recently talking about a Dr named Jason Attaman in washington. I don't know anything about him but he could be a local resource for you. Maybe search this site or google him and see what you find.

Good Luck!
Merrie

[helenlegs 11]

Hi Brian,
Doctor shopping is so tricky but of course you are right to ask these questions.
Doctors do tend to go in and out of favour especially when people are so desperate to get results and then are sometimes disappointed. There many be many reasons for some lack of surgical success, some of it to do with expectations and length of time the nerve has been compromised as well as maybe not getting it exactly right in the first place. However that has got to be levied with the realisation that pelvic nerve pain can be very complicated plus the fact that sometimes scar tissue can affect recovery. Surgery in this field is fairly recent and I'm sure there will be great improvements all round soon. I have to say that I am just so glad that these Doctors have taken an interest in our problems and therefore an opportunity for something better.
Was Dr Dellon able to say where you had the problem along the course of the nerve? I just wondered if it was anything a competent PT could try to address or have you had physiotherapy already now that you have the PFCN diagnosis?
Imaging doesn't always show a nerve problem up, so you could be wasting your money with that although of course if something does show BINGO! Dr Fillers scans are often linked with a piriformis diagnosis which a few don't always agree with. I have to counter that by saying that he diagnosed me with piriformis issues and got it spot on however.
Think I have gone round the houses and come up with absolutely zilch for you I guess it is a question of research and making a decision which only you can do. My only other comment would be that PCFN problems are MUCH less known about than PN, which suffers from a lack of medical attention anyway so I am not surprised that the PT gave you a PN diagnosis (although very pleased they had that information) However I would still give full marks to Dr Dellon for managing to narrow the nerve pain down to the PFCN. A block that works as yours seems to have done is a pretty good sign that this particular nerve is the culprit. I would love for the steroid shot to work for you now and then the surgical dilemma will be removed Fingers crossed, let us know what happens.
Take care,
Helen

[Banderson]

Re: Dr. Attaman, he did two of my injections (block plus steroid), one along the PN (don't recall the exact location) and another near a nerve bundle behind my tailbone. I did not get any relief from either of them. Dr. Serra did the second PN injection (no positive response) and my recent PFCN injection.

I have tried 3-4 different PTs over the years, without success, but none of them were trained for dealing with pelvic pain. I will try and find one in the Seattle area with this expertise. Thanks for the suggestion.

[nyt]

Regarding the MRI or MRN. I don't know of any dr.'s trying to image the PCFN. Dr. Potter in NYC and Dr. Kalinkin in Phoenix have pudendal MRI protocols. Phoenix doesn't have a 3T MRI machine but will in the near future while NYC does have the 3T MRI machine. You could email Dr. Potter and see if she can image the PCFN at the same time as the pudendal nerve. Phoenix is working on a dynamic MRI protocol to get a better understanding of any underlying pelvic floor musculature problems.

A good pelvic floor PT will be invaluable in helping you.

Even though there are a number of individuals on this forum who have not had the surgical outcomes promised to them by Dr. Dellon, which makes me very sad, he is in my opinion one of the best diagnostic physicians around. He is one of the only physicians who has been looking at other nerves besides the pudendal nerve that contribute to pelvic pain such as the PCFN or the cluneal nerve and helped develop the dorsal nerve surgical approach so he deserves alot of credit for these advancements.

Good luck and keep us posted on how you are doing.

[helenlegs 11]

Even though there are a number of individuals on this forum who have not had the surgical outcomes promised to them by Dr. Dellon, which makes me very sad, he is in my opinion one of the best diagnostic physicians around. He is one of the only physicians who has been looking at other nerves besides the pudendal nerve that contribute to pelvic pain such as the PCFN or the cluneal nerve and helped develop the dorsal nerve surgical approach so he deserves alot of credit for these advancements.

.

Undoubtedly nyt

Helen