Health Organization for Pudendal Education

Here is an e-mail conversation I had with a patient. He gave me permission to post it.

Patient:

I have had two decompression surgery. One at Hospital for SpeciaL Surgery (NYC) and very recently at Columbia Presbyterian (NYC).
I had a large bone spur presing on the Pudendal nerve. The spur was entangled in the sacro tuberous ligament. However we did no know that until the first surgery which used the gluteal fols as an entry point.
My key point is the surgeon who preformed the second surgery. He used a trans guteal approach BUT did not cut the muscles. He was able to retract the muscle exposing the ligament. alcocks canal and the pudendal and sciatic nerves. Because he didn't cut the muscle I was able to leave the hospital THE SAME DAY... Very little pain and on the thrid day I drove my car..
After reading the long recovery following Roberts TG approach I was expecting a tough recovery.

Violet:

> Hello ________,
>
> Thank you for this valuable information. I hope you are feeling
>
> better now. Did you have both of your PNE surgeries with this
> team of
> doctors?
>
> If you would like to share your experience on the pudendalhope
> forum
> I'm sure there are patients from New York who would be interested.
>
> I would be interested to hear how things go for you.
>
> Best regards,
>
> Violet Matthews, Secretary
> Health Organization for Pudendal Education

Patient

The surgeons name is Dr Christopher Winfree. He can be contacted through Columbia NeuroSurgeons. He has offices in Ridgefield NJ and NYC.
He is truly a gifted surgeon. He works in tadem with Dr Francis Lee also NJ and NYC...
I can't say enough about how easy the recovery is... just amazing.

The first surgery was at Hospital for Special Surgery (NYC) by Dr Bryan Kelly. I had been working with an excellent Pain Management (diagnostian) Dr Daniel Richman (also HSS) who found a large bone spur
whose base was near the hamstring origin. Dr Kelly (hip Dr) postulated that it started from an undetected hamstring injury (I was a runner for 20+ yrs). So they thought they could go in through the fold where leg meets buttocks, fix the hamstring and remove the spur that was pressing on the nerve. When they got in, there was no hamstring problem and the tip of the spur was entangled in the sacro tuberous ligament.
So they took a wedge out of the spur base and tried to give room for the nerve. It provided some relief.

The second surgery was with Dr Winfree Neuro surgeon at Columbia Presbyterian (NYC) he was accompanied by Dr Francis Lee (Ortho)... That was done 8/1... I left the hospital the same day...
it is now 8/7 and I am dressing myself including shoes/socks, I can lift my thigh parallel with the floor with minor effort and I walk around with an almost unnoticed limp. The ONLY pain med I have taken in 3 Tylenol after the 1 1/2 hour car ride home..

After reading the long recovery stories about the Robert trans gluteal approach.. I wanted to get the word out to other sufferers that there is an alternative trans gluteal technique with significantly less recovery time, less surgical pain and time in hospital.

Dr Winfree is a very talented surgeon as is Dr Lee... I was lucky to find them....

Now the good news/ bad news Dr Winfree found the bone spur was only a secondary reason for the pain.
The primary reason are some veins that have deformed (think varicose veins) and are pressing on the pudendal and sciatic nerves. He had a vascular surgeon advise him NOT to try and cut them. But rather close me up and have an Interventional Radiologist do an embolizism on he veins which will cut off blood and they will shrink on there own... He used the word "bloodbath" if the veins were cut..

I've emailed with Dr winfree post-op and we're going formulate a plan to get that done asap.. When I'm in his office for the post-op follow up on 8/12...

I'm very confident by Christmas I will be pain free... as embolized veins take 4-6 weeks to shrink and be re-absorbed by the body...

I will try and get on the forum.. But I run two business and my days are quite full.

Please feel free to use this info on the forum

Thanks for this very interesting post. I'm curious though, doesn't sound like they had to go as deep as Alcock's canal, to me that is part of what makes the difference in cutting the glutes, or am I wrong?

Excellent news about this type of surgery, thanks Violet and 'Patient'.
I'm not sure that they would reach Alcocks canal either nyt. . . .but great for people with problems that are along or just above the gluteal fold.
Trouble is that many people don't know exactly where the problem may be along the course of the nerve until surgery.
My problem for instance would not gain anything from this surgery as it is in the piriformis and so higher up than Alcocks, never mind. . .I would imagine it may be useful to others. I would be very interested to hear how the embolisation works and of course hope that it does exactly what is hoped for, pain free by Christmas. Wonderful, good luck.
Helen

Hello,

I am very happy for this person from NY. He or she is very lucky to live there where medical system is really good.
But what it makes me think about is how problematic is our diagnoses. The patient had to deal not only with good hospitals and surgeons but with good diagnosts. Right problem brought right solution. In reality PN problems are very different. I hope that life of patient will be good and productive.

Good luck,

Helen

Hello Violet,

Do you know by any chance if your friend could keep ST in tact? Or it was deleted?

Helen

It says they exposed alcock's canal -- whatever that means. Can't say for sure if they cut ST ligaments but I think they would have to in order to access the nerve in that approach. Whether they completely sever them or just cut vertically like Antolak/Conway do and then sew the ligament back up -- I don't know.

You can start a list of questions if you want and I can e-mail this person back. I do not know them personally -- they just sent an e-mail to our admin box.

Violet

This is very interesting . . . Thank you to the patient for sharing....

my questions: What type of diagnostic tests were done? and What were the patient's pain symptoms?

Thank you,
Debbie

Debbie, here's an answer back on the symptoms. No reply about diagnostic tests:

My symptoms were classic L4/L5 sciatic radiculapathy.. Numb/tingling, shooting pain, outright pain from
top of buttock to bottom of feet, all around leg front/back and into groin... Also had sensory nerve issues IE: when getting into shower, water felt like glass hitting legs until I got used to it.. Could not go in Pool or Ocean or wear shorts even on the hottest days as sensory pain was too much...I could lift things no problem... But if I sat the pain got worse... Had to lay down to get any relief... Cortizone shots in L4/L5 did nothing.. only drug that helped was Lyrica and that was minimal... Besides laying down.. a double shot (or two) of Grey Goose when it got really bad, would allow me to get to sleep... Not sure how detailed you want to get but I'll mention:
Because of the pudendal nerve involvement, normal sexual function was not possible.. ie I am/was a very healthy man... Hydraulics always worked but the sensation was "un-pleasant to pain"
Also feel like I have pressure deep in the pelvis/leg area..

Has anyone else on the forum had a consult with Dr. Winfree?

If so, would they please post their experience.

Thanks so much,

Jackie OUCh

Yes, I just saw Dr. Winfree recently. He does the TG method of surgery. Dr. Winfree said his method is going to be similar to Dr. Filler or Dr. Conway. Although, he made recovery sound less extensive than I have heard about. I guess one would not know about recovery until they actually had the surgery? Most patients going home the same day or soon after he said. He said he "spreads" the gluteal muscle, but the technique is less invasive than the older TG method he said (there is some cutting as it is TG surgery.) I do not know enough about the older or newer version to comment.

Dr. Winfree said he does cut the ligaments (I guess if needed) because the nerve would become entrapped again if he repaired them. I believe he can decompress most of the nerve, I am trying to remember (something about not the terminal branches? I will ask about that again.) He will want to know if you have pelvic congestion because he will not be able to operate if it is a big issue. I am having to have another MRI to see if my embolization I had is still holding. He said he has had to stop surgeries when too many veins needed to be taken care, as blood loss is a problem. I was told he does about one PN surgery a month and has been doing them for 3 years (I think that is correct.) I know he also does neurostimulators and maybe pain pumps. He seems to go for neuromodulation first, at least that is what I took from the appt. It was somewhat of a quick appt., NY pace is suppose, but he was willing to answer my questions. Dr. Winfree does require a PN nerve EMG, at least he wanted one from me if I were to use him.

I hope I am remembering everything correctly. I do think he is another option for a PN surgeon. I also found another Dr. at NYU Langone Medical Center from searching online, he deals with PN/surgery. He is also a neurosurgeon. I know nothing about him or his technique other than that. His name is Dr. Noel Perin for anyone interested in finding out more.

I hope this helps answer some questions for you.