Health Organization for Pudendal Education

Greeting everyone. So here is an update from me. I do not have PN according to the doctors at Johns Hopkins. The mri guided pudendal nerve block with Dr Fritz did not relieve my sitting pain. However the ct guided block to the PFCN( posterior femoral cutaneous nerve) did take away some of the pain, but still could not sit. With the PFCN blocked I could feel some type of a deep ache below the glute while sitting. So they sent me away, back to orthopedics to try and figure out what was in there still causing the sitting pain.

Visited my original hip surgeon for my 2yr check up from hip resurfacing surgery. He feels the piriformis is spasming over sciatic nerve. When they do the hip surgery they detach the piriformis from the trochanter and then reattach it when the metal hip is in place. So the when they reattach it to the bone it is shortened and lays right on top of the nerve. So the hip surgeon is recommending we cut it. He did some type of rotation of my hip with it flexed up to the chest that elicited a huge pain response from me, almost came off the table it hurt so bad. He said the test was positive for piriformis syndrome. So he thinks the deep ache in the glute is the shortened piriformis muscle impinging on a nerve and he feels cutting it could help with the sitting pain. So I wonder if I should take up his offer. Opinions?

I imagine I would still need to do something with the pfcn since that is the burning pain in the inside of the corner of the butt cheek, So I may need two operations. I saw a Dr Rosson at JH who is a plastic surgeon but only does the nerves now. He was a fellow of Dellon back in 2005 and said he could do surgery on the PFCN but I must first figure out this other deep glute pain.

Hi Frigator,

I'm sorry to hear that you may have two different problems. But, it is good that you are getting some clearer diagnoses. The piriformis syndrome diagnosis makes sense from what you've said. Would you do that surgery first? Given that you have a clearer sense of what is going on there, I would think it would make sense to do that first and see how the other pain is doing when this pain resolves. I don't have experience with either of these problems, so I don't have much to offer. Do you feel good about these two surgeons?

April

Thanks for the reply April. There is good video of Dr Tollestrop removing the piriformis. Tollestrop is fellow of Dellon and they work together each winter.

https://www.youtube.com/watch?v=oUGibmuBCNc

So my hip surgeon has offered to do the piriformis operation but said he may get a neurosurgeon to assist him if its necessary to dissect the nerve from the muscle. But the hip surgeon has never done it as a separate procedure....he does 15 hip replacements a week and in each operation he cuts the piriformis and then reattches it. So he is very experienced in the area and I appreciate him offering to do it. He says he thinks this procedure will take care of the deep ache pain and maybe even some of the pfcn pain.

I have a friend who is a spine surgeon and am going to meet with him tommorrow and see what he thinks and find out if there is anyone in charlotte who does the operation who can give me a second opinion. My hip surgeon is two hours away in South Carolina. I am grateful that the pudendal nerve block was negative so that was one good piece of news. But that move the surgeon did stretching my piriformis fired up my nerves and they are killing me. I had to take the morphine last night and thought I was done with that drug.

And how about you April....are you still improving from your surgery?

That all sounds good---that the hip surgeon can do it (even if he's far away). And it's great that he does this procedure as part of a hip surgery so much. But being closer to home is simpler, so I can understand trying to find someone closer. Keep us posted. Yes, it is great that that nerve block helped eliminate the pn diagnosis.

I'm doing well. I still cycle in and out of burning pain, but the pain is very low in intensity, and when it goes away, it often goes away entirely. So, I have strings of days (even a week sometimes) with zero pain (which I couldn't even let myself dream about a year ago). So that is all wonderful. But, I don't understand why I cycle back into pain. I'm not doing anything different that could explain it. It may be the non-linear process of nerve healing and/or a reaction to tapering off the gabapentin. But the general pattern is a good one, I think. As everyone here knows so well, the healing process for nerves is very slow.

April

April, I so glad that your are improving...sure beats the getting worse we sometimes see. And the healing process is slow for sure but to go almost a week pain free is great. Good for you!!! I tried to reduce my lyrica some and just a 50mg reduction resulted in pain increase....so I am staying at 300mg. Its tough getting off these medicines.

So I talked to Dr Rosson from JH yesterday morning concerning this new piriformis syndrome diagnosis. He called me..nice to have a doctor call me for a change...He said he rarely has to do piriformis surgery because the botox works well there....He is recommending botox injections into the piriformis muscle, they have them MRI guided, done to confirm the piriformis is the culprit and to lower the pain....So he put an order in for that so another trip up there for me to see Dr Fritz. I see people here on this forum get botox in all kinds of places. ..Anyone get botox to the piriformis?

Oh, that's great. It seems much less invasive than a surgery, although I have heard that botox can be, at least initially, painful. I think I've heard of others reporting the piriformis syndrome on here, but I don't remember hearing about botox as a treatment. I'm guessing it moves the muscle away from the nerve.

Yes, I am extremely grateful for the long string of days without pain that I now get. I'm also grateful that I always sleep through the night even when I do have burning. It's mild enough to not wake me. (Moved my mini-freezer out of the bathroom and into the garage a couple of months after the surgery. What a glorious day that was!)

April

Quick update folks......So I had the botox injection into my piriformis on Dec 20th at John Hopkins. It was amazing how they could isolate that small muscle with the mri machine and then inject it with botox in several different places. I could see it on the screen as they ran me in and out of the scanner.

I was able to sit yesterday for a 2hr car drive which was fantastic. So it appears my sitting is better but still have the pain and impingement in the hip, plus that burning pain from the pfcn. But to be able to drive 2hrs to a wedding was great. I hadnt driven that long in probably 18months. I also was able to sit some in my recliner. So maybe the injection helped some, will have to see over time.

That is fantastic news. So happy for you. How long do they think this pain relief will last?

April

Frigator
Hi i read all ur posts here ..lots to decide n lots of doctors uggg...maybe going to dr eric williams in balt md just for his opinion, would be one option. He has 11 patient posts and all 11 were 5 stars. They all said he was very kind and listened . I do not know him but a call to his office would answer if he dealt w your issues. ( i mean go just for his opinion) Even though he is associated w dr dellon u do not need to see Dr Dellon just ... Dr eric Williams, as i think he actually takes insurance . Search patient reviews on every dr on all sites to include this site for sure w any dr u pick. I know its hard. Sorry i can't help more , i am just a patient and as lost as the next lol best of everything . Sadie

P.S. Vitals.com claims to be the largest on line data base for patient reviews however I still think forums are the best source of patient experiences. Years ago I printed out reviews for Dr. Dellon from Vitals.com" as part of some research. I went back recently to see what patients are now saying, and noticed four detailed bad reviews were missing , even though reviews which were posted years later are still available. I realize doctors can challenge bad reviews but four (three from 2013, and one from 2014 ) seem to be a lot to be missing. I emailed vitals.com and gave them the exact dates and titles and did not get a response. Again best of luck to all.... there are good doctors out there and I know you will find one.