PFCN block in Baltimore

[frigator]

So flew back to Baltimore from Charlotte for a guided PFCN block ordered by Dr Dellon. Did not get to meet Dr Fritz as they paired me with a younger doctor, maybe a resident or fellow, not sure. So it took a long time. They treat it like its surgery, full iv, gown, sedation. Very Professional. Block hurt going in but was much stronger and had more coverage than the block I had at Dellon's office. But had same results with block...took away some pain but still hurt to sit. Dr Dellon wants to continue on with surgery. The Doctor at Hopkins said they could do the cyro treatment but Dellon said he would not recommend that as "cryoablation is a tempory thing and you would likely need to have it done several times a year. So I do not recommend this nerve for this location."

So not sure where to go from here. I dont understand why Dr Dellon would recommend surgery when the block doesn't take away all the pain. Shouldn't a successful nerve block be conducted before surgery? For those who have done surgery did you require a pain ridding nerve block first? Isn't that one of the Nantes criteria?

And is what he says about the cryo true? I was so hoping this was the nerve and I would have a diagnosis. But it appears something else is wrong in there in addition to the PFCN. I think its the pudendal, with the anal pain I have but Dellon disagrees since it doesn't feel like a dagger. So anyway, all the travel and sitting has got me nowhere.

[stephanies]

Frigator,

Was the fellow the doctor who spoke to you and prepped you for the block and then Fritz did the block or did the fellow was do the block? I remember working primarily with a fellow, but Fritz himself did my block. I hope this was the case for you as you traveled a long way to get to JH for his expertise. I don’t blame you for hesitating on the Dellon surgery if the block did not take away a significant amount of your pain. Since the PFCN doesn’t go to the rectal area, it sounds to me like there is another nerve involved or something else going on. I don’t think the pain needs to be knife-like to be coming from the PN. Were you able to ask the radiologist for an opinion about PFCN cryo? Can you call and talk to Fritz for his opinion based on the results of the block? In my experience, doctors tend to recommend what they know, i.e. Dellon is a surgeon and will look at surgery to address your issues. Unfortunately, many of us don’t have one doctor who understands all the potential causes of our pain and we end up having to evaluate what each doctor recommends and make our own treatment decisions.

Stephanies

[frigator]

Yes, the fellow himself did the block but Fritz was in the room giving directions. I was told that cause you cant see on your belly who is back there, just hear the voices. I talked to the fellow after the block and he was the one who told me they are doing cyro to this particular nerve, and that would be a good option if you don't want to do surgery. I dont know if they are doing a study or just regular treatment....I am still waiting on his report cause, I hate to admit, I forget his name. He came in the room and I thought he was just getting info, didnt realize till later he is doing the block.

And the anal pain is bad, its the worst sympton esp in the evening. But Dellon thinks its nerves cross talk. And you cant argue with Dr Dellon. The one good thing about Dellon is he answers my email same day.

I was hoping Dellon would go further and give me a better diagnosis, try to find out if another nerve is involved. But he is sticking to his original diagnosis and he says the nerve must come out. The fellow also told me Dr Dellon has sent patients of his in for cryro. So I need to look into it further.

Were you able to call and talk to Dr Fritz on the phone Stephanies?

[frigator]

So researching cyro and there is not that much on this site, just 14 posts back in 2017. I see you had it Stephanies and suffered a terrible flare. I like your sentence:

" I suspect I would be better off now than I am if I had avoided all surgeries, nerve blocks,other injections, Botox, cryo, everything. "

[stephanies]

I still think that is true for me, but others have found long term success where I did not. I believe the different responses to treatments comes from what factor(s) are causing a person’s pain. There are many causes of pudendal nerve pain and I was largely unaware of that until many years into this long journey. I also had PN cryo rather than PFCN cryo.

[frigator]

I wonder if its worth it to try and get two nerves blocked at once...the pudendal and the pfcn. But wow, I bet I would be super numb from that! If that took away my sitting pain then at least I would know what I have for sure. The fellow told me they sometimes do multiple blocks in one day. But who will order it? I still have no treating doctor. So far the block has not caused a flare at all and its been four days. It actually made it feel better the day after the block and maybe still a little better this morning, just from the block. They fellow had planned to put a little steroid in the block but I told him I had flared from cortisone before so they took it out and just used lidocaine.

[April]

I just read through the thread and wanted to add a couple of small points. I agree with Stephanies that the anal pain does not have to be severe for it to be pn. My anal pain was never that bad. It felt like mild needles (when I had it) but was not as painful as the other areas. Also, you might want to just do a pn block next time (rather than blocking both nerves) to see if that removes the sitting and anal pain. If you do both, there's a chance that the pain reduction is just due to the blocking of one of the nerves and you won't know which one. Also, you could consult Conway for a second opinion on the diagnosis. He could also give you his take on the usefulness of surgery (on pn or the pfcn). He does phone consults, so you could talk to him on the phone first.

April

[frigator]

Thanks for your reply April. Yes giving Conway a call is a good recommendation. And thanks for confirming the anal pain doesnt have to be dagger like. MIne is bad just not dagger like so I dont know why Dellon is ruling out the pn anal branch

I talked to the lady at JH yesterday and she is going to talk to Dr Fritz about the Cyro and see if I am even a candidate. I have a metal hip so cant do a regular MRI and those cyro injections are MRI guided. So she will get back to me on the cyro. And yes, just blocking the PN is an option. And I have not read of anyone on here that has had two nerves blocked at once. Though Stephanies mentioned she had multiple blocks, just not sure if they were same day.

So I dont know. This block flared the nerve some yesterday after giving minor pain relief and had to take the blue pill last night which is morphine and I had mostly weened off that one.

[frigator]

I have been trying to talk to the doctor who did my block and received this email yesterday:

"This is Linda, Dr. Fritz’s nurse coordinator. I spoke with Dr. Rivlin and Dr. Fritz yesterday as promised.

Per Dr. Fritz, “the Cryoablation for the posterior femoral cutaneous nerve is not as good an option as a surgical neurectomy”. Dr. Fritz suggested that you reach out to Dr. Gedge Rosson’s office here at Hopkins as he may be able to better care for you and guide your clinical management moving forward.

The scheduling line for Dr. Rosson is 443-997-9466. You will be prompted to select an option for “new patient”.

So looks like they are sending me to another doctor who is a plastic surgeon and evidently does nerve surgery also. Anyone hear of this Doctor? It would be very difficult to mount another trip to Baltimore with the terrible sitting pain to see this unknown doctor. I am so tired of having a doctor send me to another doctor who then sends me to another doctor and so forth. But maybe this is a good alternative surgeon. Dr Dellon is also a plastic surgeon. Here is Rosson's info and it looks like he trained with Dellon:

Dr. Gedge Rosson is an associate professor of plastic and reconstructive surgery and oncology at the Johns Hopkins University School of Medicine. He specializes in complex peripheral nerve surgery and microvascular perforator flap breast reconstructions, such as the DIEP (deep inferior epigastric artery perforator flap), the SIEA (superficial inferior epigastric artery flap), the SGAP (superior gluteal artery perforator flap), the TUG (transverse upper gracilis flap) and the PAP (Profunda Artery Perforator flap).

He was the first surgeon in the United States to widely implement pre-operative mapping of the abdominal perforators using 64-slice multidetector 3-D CT scan angiograms, and he is one of the first to now regularly connect nerves to improve breast reconstruction.

Dr. Rosson serves as the director of breast reconstruction and Microsurgery Fellowship program director. He is also chair of the Compliance Committee of the Office of Johns Hopkins Physicians, chair of the Risk Management Committee of the Johns Hopkins Hospital and chair of the Special Credentialing Review Committee of Johns Hopkins Health Care.

He graduated from New York Medical College in 1998 after receiving his undergraduate degree from the University of California, Berkeley. He did his internship and general surgery and plastic surgery residency training at The Johns Hopkins Hospital/University of Maryland combined program. Dr. Rosson then completed a peripheral nerve surgery fellowship at the Dellon Institute for Peripheral Nerve Surgery in Baltimore, Maryland.

His research interests include patient safety and outcomes studies in microsurgery, breast reconstruction and peripheral nerve surgery as well as tissue engineering. His research has been published in major peer-reviewed scientific journals and presented at both national and international meetings.

Dr. Rosson is board certified by the American Board of Plastic Surgery and currently has hospital privileges at The Johns Hopkins Hospital, the R. Adams Cowley Shock-Trauma Center and Greater Baltimore Medical Center (GBMC) in Baltimore, Maryland.

...read less
Titles
Co-Director, Johns Hopkins Facial Palsy Center
Director of Breast Reconstruction
Associate Professor of Plastic and Reconstructive Surgery
Associate Professor of Oncology
Departments / Divisions
Oncology - Breast Cancer
Plastic and Reconstructive Surgery
Centers & Institutes
Breast Center
Facial Paralysis and Pain Treatment Center
Sidney Kimmel Comprehensive Cancer Center
Education
Degrees
MD, New York Medical College (1998)
Residencies
Johns Hopkins University School of Medicine / Surgery (2002)
Johns Hopkins University School of Medicine / Plastic Surgery (2004)

[Violet M]

Hi Robin,

I don't recall hearing from anyone who has had surgery with Dr. Rosson. But I'm wondering if it makes sense to have surgery on the PFCN if you didn't have much relief from the PFCN nerve block. It sounds like your ischial tuberosity block gave you longer more significant relief. I can't remember if you ever had an evaluation by a good pelvic floor PT who is knowledgeable about pudendal neuralgia and whether they were able to press on your pudendal nerve at the ischial spine or at Alcock's canal via the rectum to see if you have tenderness along the course of the nerve. If you do then it might make sense to try a PN block. I had a lot of pain near the ischial tuberosity when my PN was bad. The Alcock's canal and perineum are near that area so there is a chance that you have PN involvement but I can't say for sure.

Violet