Health Organization for Pudendal Education

One and all;

Calluna, I don't care if it's AM, the drink still sounds good to me. I'm a tea drinker also, but getting ready to change

Now about Karyn: I talk via e-mail about 6 times a week to her. I speak on the phone almost every week. This is one of the kindest people I have been bleesed to meet on this site. I'm going to try very hard to meet her in person very soon. She's having surgery with Conway, I'm heading out to Hibner for a second opinion. We do not argue about this. We discuss this. She has a much better grasp on what all this medical stuff means than I do and she explains to me until I understand what she's saying. Do we always agree? Probably not, BUT we do agree to disagree. I may have the surgery with Conway. I don't know. I do know that I don't understand any of the MRI's that have been posted and I'm more confused than ever when personalities are mixed in. When I talk to Karyn, I know she will take her time to try and explain them to me if she knows or think she knows the answer.

Ali: A while back I was having lots of problems with UHC ins. Ali took his time to try and help me to understand the ins. business and told me what I should be asking for. We both had Dr. Quesada for shots. They did not work for him and would probably not go back. 5 out of 6 worked for me and I would go back. Dr. Q also wrote 2 letters for me to the ins company. We once again, agreed to disagree. Thanks again.( By the way Ali, mu husband loves reading what you write.) I don't think he understands any more than I do, but he likes reading your posts. Must be a guy thing

There are so many people on this site that have a great understanding of terms, medical lingo and ect. We need to use these people and not hurt their feelings because we don't see it their way. If I understand it, none of us really knows what's going on inside of us until a doctor gets there. As time goes by, more and more info is coming out and that helps us in many ways. I feel I've saved money, time and unnessarry testing by reading the threads.
Whenever someone disagrees in a kind way, it opens up a whole new avenue to research. Unfoutunately, I have dial-up and it's another pain in my butt to try and research so I don't. That's why I rely on many of you that do.

We need to remember, all of us are in pain as we write.

Hopefully, you'll all have a less painless day tomorrow.
Doreen

Me again;
Must be time for my meds. I wrote" have a less painless day". I did not mean that. I meant a less painFULL day, or better yet, a no pain day.
Sorry for the mistake. See, we all make them. I'm just better at screwing up than most HA HA
My best to all;
Doreen

Missingmylife42 wrote: i dont think i am going to have the surgery.. o yea forgot to tell you this he wants me to have a ketamine coma for five days and he said the best place to have it done is in mexico HELLO MEXICO.. then he said NJ is the 2nd best. He thinks the coma will reset all my nerves.
Alisa

I have not been to see Dr Hibner so I cannot comment on him as a Dr however remember there are other PNE Dr's you can try for this. I don't know the extent of your pain or problems and am no expert but the ketamine coma idea sounds an incredibly extreme and risky option. I have heard it is used for extreme cases of RSD ( Reflex sympathetic dystrophy) . Maybe you have that, I don't know. There are a lot of risks associated with it though which are understandable considering patients are put into a coma. The reason it is done in Mexico is because it is not FDA approved. It is also available in Germany. I can understand why people do it but I would definitely look into many other options before going down that route.

Good luck with whatever you decide to do.

Hi Missing,
Thank you very much for coming back to update us about your appointment with Dr. Hibner. I'm sincerely sorry it was such an upsetting experience for you. I can only imagine your confusion and disappointment. Well, it looks like you've got some decisions to make. You certainly can't go on as you have been. You've got to do something. If you're uncomfortable with going back to Dr. Hibner and undergoing his treatment plan, you still have options with other surgeons. If it were me, I'd explore those other options. I'd also like to apologize to you for how OFF TOPIC your thread became. I know I didn't start it, but I really do feel it's a shame, just the same. So, I'm really glad you came back to get us back on track! As upsetting as your trip to AZ was, I would try to use it as a learning experience. You now have personal, first hand experience with Dr. Hibner and know what to expect from him. The question is: Are you OK with that? Another thing to consider is, it appears you ARE entrapped bilaterally. If you have surgery with him, it's probable you'll have to go out there again to have the other side done at some point in time. I understand these decisions are all so very hard and wish you the very best. Please know that you're not alone and we're all here for you.

Doreen, Griff, Ali, & Sgrandy: Thank you so very much for your kind words about me. I am humbled. However, GregT was 100% correct about one thing. I can absolutely handle myself.
Hopefully, I won't have to handle myself anymore, because that's not what I come to HOPE for. I don't think it's what any of us come here for. I miss Ali's contributions to our community and am looking forward to having him back.
Warmest of regards,
Karyn

Alisa,
I am so sorry for all that you have been through. This just another example of the sorry truth about this problem. No one including the doctors knows anything for sure. Everything is an educated guess.You have to try everything and hope it works. I have no reason to believe that anyone is motivated by anything but the desire to help others. This would include Greg, Ali, Karyn, Celeste as well as many others who have all helped me in the past. It is hard to see people you like and respect fighting with each other on a personal level. Sometimes I feel like a child in a dysfunctional family. That said, I value strong opinions as long as they are accompanied by evidence and mutual respect. People have to make their own choices and realize there are no sure things with this condition. As Doreen said, we are all in pain. I wish you all the best as you seek an answer.

Don

I have been to Dr antalok worse thing I ever did. Before him I could sit. No burning. He hurt me so had. Proof just by the difference of mris I had within five months. This whole thing is a nightmare. He messed me up so bad. My central nervous system I'd fried which left me with rsd loss of my hair and tinnitus. Basically Dr antalok ruined my life. Thinking about Dr dellon now.

Dear Alisa,

Always praying for you. Does Dr. Hibner think the next step is surgery? Or is the next step this Ketamine Coma?

Please don't be afraid of surgery. Easier said than done, I know. But see how strong you've become through all of this? Keep on...

With love,

A's Mommy

Alissa, so sorry you had to go through all that and still don't have relief. I am h
Going to see Hibner in August and wondered if he was able to get you into dr Olga soon after your appt? Had he planned on doing the On-Q pump before you left Phoenix or was that just because of your complications to the lidocaine injection? I just can't imagine flying there and not having more than an elvauation by him. Input from other Hibner patients is good too. Have you decided what to do next. I pray you get relief soon.