Need words of encouragement

[Barb]

Hello Ladies and Men (can't leave them out ). I am in need of some words of encouragement from everyone. There are so many of you on here who are so good about letting people know they are not alone and there are a lot of ways to attack this horrid condition. I am in the throes of finally admitting to myself that this is not just going to go away. I felt so good yesterday that I thought......maybe, maybe, maybe the nerve was not really entrapped and I'm going back to my life........ but of course I was fooling myself. Today is back to the unrelenting pain. My pain is especially bad in the sitz bone because of the scar tissue in the superficial transverse perineal muscle which is entrapping the perineal branch of the nerve. Sitting is my nemesis!

I am waiting to hear from Prof. Dr. Aszmann. I sent him the CD of my MRI. He is going to read it and give me his impressions. But then what? I have been reading the information on the site regarding pain pumps, ESW, neuromodulation. I really wish I had never heard of these things.......as do we all I guess.

At any rate, I do feel that I am not alone when I read the similar stories here. There are so many on here that are so inspiring. I see so many with such positive attitudes. Onward and upward, I guess.

I think I've just talked myself into feeling better

[Violet M]

Hi Barb,

I'm sorry your good "spell" was short-lived but just the fact that you had one good day can give you hope that there will be more good ones, right?

It is agonizing deciding what to do next with this condition because it seems nothing is guaranteed but Alan had some words of wisdom that I've posted on the treatment options page that I think make a lot of sense. http://www.pudendalhope.info/node/11 You will get through this and eventually find a treatment that relieves your pain.

Take care,

Violet

[Barb]

Thanks Violet.......I loved Alan's words of wisdom. They are so true for any situation, not just pudendal patients.

My biggest challenge right now is trying to adapt to limitations. I still feel a sense of loss when I see my friends and family going on trips, seeing a good movie, play...whatever and realizing the things I took for granted two years ago, I can no longer do, or if I do they must be done with preparation and a shorter version. I really need to focus on what I can do, instead of what I can't...........more words of wisdom.

I received the email from Dr.Aszmann. He sounds very nice. He explained ( not in terms I totally understand) that I am indeed entrapped in the perineal branch by scar tissue and in the other area Dr. Potter saw. It is exactly where my pain is. He advised release by the anterior approach. He said he could talk to me by phone, so now I have to make my lists of questions.

Thanks again for your encouragement.

[Violet M]

Sorry to hear about the confirmation of entrapment, Barb.

Not sure what all you have on your list of questions but one I thought of that you might ask is how many of these anterior approaches has he done and what's the success rate. And by success rate you want to clarify -- eg. at least 50 % improvement of all symptoms and no worsening of symptoms. There is no published peer reviewed literature on the anterior approach (that I know of so you will also want to find out if your insurance would pay for that surgical approach.


Best,

Violet

[Barb]

Great question. I am open for suggestions on other questions. This is definitely a monumental decision. I certainly don 't want to be worse, but I know any surgery is a risk.

I am also reviewing all other conservative treatments. The interstim is one, but the things I have seen about it are not too appealing.......and I know pain pumps work for some, but that is not a great way to go either in my opinion. I may be wrong....I just need more information.

I sent a private message to A's mommy to ask her experience.....haven't heard back yet.

You have many years of being on this site and I know a lot of information on pudendal neuralgia, so I appreciate your input.

Barb

[helenlegs 11]

We all seem to need to take leaps of faith (or not of course) but that's what it is down to essentially. The good thing is that you are doing all of the research and asking the right questions barb. For myself I am sick to death of medical people saying that any op will just cause scar tissue, so it isn't always a great option. . . . all I know is that scar tissue is what has me in this situation so trying to get rid can only be a good thing as I'm just going to be the same if scar tissue then forms in the future. . . .I've already got it!! Good luck. Isn't it hard having these big but unsure consequence decisions!! I think when you get to meet the surgeon and see what he has to say it will make a big difference to your outlook.

[Barb]

Love your logic....you are so right! We already have scar tissue, so how much worse can we get?

I did speak to Dr. Aszmann. I really felt good after our conversation. He spent about 20 minutes answering my questions. He is a very busy man, so I felt he went above and beyond to spend that amount of time. He said my MRI showed a pretty large mass of scar tissue close to the pubic ramus. The perineal branch is also affected. He thinks the anterior approach would certainly give me a good chance of freeing the nerve. The other good thing is it has not been entrapped for a number of years. The only question he can't answer is how damaged the nerve is and if it can repair itself. ( Oh for a crystal ball.....wouldn't life be easier?)

I am thinking seriously about the surgery. It is less invasive than the other types of PNE surgery. It is an overnight in the hospital and 5 days in Vienna. ( I guess being in Vienna is not all that bad.) I do worry about the flight over and back and, of course, the expense, which is major!

Sure am glad to have a sounding board of like minded people like you and others to talk to.......it really is difficult to explain this if you have never heard of it.

[Violet M]

Barb,

That's great that you were able to talk to Dr. Aszmann! I know it's tough to decide whether to have surgery and which approach to try. I wish you luck with your decision and hope all goes well for you.

Violet

[Barb]

Thanks Violet, I have a lot to think about. I am trying to weigh all the pros and cons.....do my research, and see what, if any, part of the surgery might be covered by insurance. ( I know that's a long shot.)

Barb