Health Organization for Pudendal Education

After severe suffering for a number of years I decide that I'm getting surgery or my life is not worth living. I can't do this anymore. I don't feel up to being cut but can't go on the way I am. I'd appreciate any information.

Hi Saint,

That's a really tough decision but I can understand why you are thinking that way. Deciding on which approach to have and which doctor to see are also difficult decisions that can depend partly on your history. Have you seen one of the pudendal neuralgia docs or surgeons yet?

Violet

I saw Dr. Castellanos a few years ago and had the shots in my back. My husband had told me to slow down and not to get any more medical care for awhile. I was treading water but either I'm getting worse or getting less able to handle it. I made the decision to see about getting the nerve released. I think mine was either cut or crushed due to the severity of my symptoms. I hope they can help.

That is a hard decision. I understand the instinct to wait, but like you I felt that I was just getting continuously worse, so I decided to go ahead with it too. I was able to mail Hibner (who works with Castellanos) my recent MRI report, MRI, and a two page summary of my health history (with dates and summaries of key events and treatments) and get a go-ahead on surgery. He read my records and talked to me in a phone consult, and it was settled. I think this was made easier because I had seen him two years earlier, so I was already a patient in their system. So, if you want to get the ball rolling with the decision making process, you could try to set up the same thing. Mail your health records to Dr. Castellanos to see if he will do a phone consult to talk about surgery. You could, perhaps, do that with other doctors you're considering as well. You do still have to have a pre-surgery appointment at least two days prior to the surgery, but that could be done two days prior so you only have to fly out there once.

April

Thanks for that information. It would be good to cut out a step if possible. Did you have your surgery done yet?

Does anyone know the percentage of people who get better vs those who get worse?

No, I haven't done it yet. It's next month. Hibner said that they estimates (from data from their own patients) that about 2/3 of the patients experience some improvement and a smaller percentage (I can't remember the figure) have substantial improvement. I found a fairly easy to digest article (not technical) that included some of these figures from 2012. Here's the link:

https://www.mdedge.com/obgyn/article/52 ... fVvyrYEqbk

And here is the the passage related to outcomes (it's at the end of the article):
"At our institution, using national scientific standards for the reporting of pain and extent of pain improvement, we have found that 70% of patients who undergo transgluteal surgical decompression have at least a 20% improvement in pain. Within this broad category are a significant number of patients who are pain free, and many who report improvements of 50% or more."

The piece also includes a description of the surgery, although I also learned even more from talking to one of his fellows. He cuts the STL and repairs it, and he also detaches the SSL from (I think) the ischial spine (the only other option is the sacrum) and does *not* reattach it. It's left unattached to give the nerve more space. So, it sounds like he's really crafted the surgery in a way that maximizes the likelihood of success.

April

April wrote:No, I haven't done it yet. It's next month. Hibner said that they estimates (from data from their own patients) that about 2/3 of the patients experience some improvement and a smaller percentage (I can't remember the figure) have substantial improvement. I found a fairly easy to digest article (not technical) that included some of these figures from 2012. Here's the link:

https://www.mdedge.com/obgyn/article/52 ... fVvyrYEqbk

And here is the the passage related to outcomes (it's at the end of the article):
"At our institution, using national scientific standards for the reporting of pain and extent of pain improvement, we have found that 70% of patients who undergo transgluteal surgical decompression have at least a 20% improvement in pain. Within this broad category are a significant number of patients who are pain free, and many who report improvements of 50% or more."

The piece also includes a description of the surgery, although I also learned even more from talking to one of his fellows. He cuts the STL and repairs it, and he also detaches the SSL from (I think) the ischial spine (the only other option is the sacrum) and does *not* reattach it. It's left unattached to give the nerve more space. So, it sounds like he's really crafted the surgery in a way that maximizes the likelihood of success.

April

April - thank you very much for that information. I'm so emotionally scarred from this that I get sick to my stomach even reading about the procedure. I went through a blitzkrieg of surgeries and now I can't stand anything medical. I'm in a very tough spot but trying to push forward. 20% isn't much improvement. I have total urine retention and inability to defecate without severe pain so I think my rectal branch was damaged the most. Is the surgery very painful do you know? Does anyone come out worse or with severe issues?

I assume it is painful, but they put what they call a wound vac on the site, which allows you (the patient) to pump the surgical area and the nerve with a numbing agent, so I think that helps a lot. (The article on that link describes this as well). Violet posted a journal article by Hibner in another one of your posts, and that article gives the figure of 1% for the percentage who get worse.

April

That would help if one could put a numbing agent on. Dear God I am afraid to get worse -- it would do me in. In what way do they get worse? I'm afraid of becoming incontinent. Post-surgery I lost control at both ends and had almost ended my life then. I didn't want to live like that. Gradually my continence returned, but not before scaring me half to death.

I really see the emotional toll this has taken on me. I'm so afraid of anyone even touching me now. I'm in a bad place and don't know if I can even withstand more surgery but I'm afraid because someone had said that if you wait too long the window is lost where one can possibly still return the nerve to some function. I'm getting sick to my stomach now.

I'm so sorry, Saint. That sounds awful. What kind of surgery was that? The wound vac is temporary. It's designed to give you pain relief in the first 1-2 weeks after surgery. After that, it's removed.

I'm not sure what happens with the 1% who get worse, but I don't think incontinence is common. I think it's just increased pain.

Do you have a pt? My pt treatments relax my muscles and that tends to have an overall calming effect on me. Does it help you in that way? If so, that might be a way to try to feel better. You may also be able to ask your pt for advice on how to move forward with getting information about surgery.

April