pudendal pain

[theresa]

I'm 70 years old soon. I have been suffering fir 7 yrs and more. I don't leave my house. I don't know how I would make it to Arizona. Would it be worth it even to try and see Dr Hibner? I live in Ohio, I think I am now to old for anyone to want to see me. Continues pain is getting very down. What would my chances be. I don't know if I could stand the surgery, Is it terribly painful? I sure it is.

[stephanies]

Hello Theresa,

Welcome to the forum. Have you been diagnosed with pudendal nerve issues as of yet? What are your symptoms? Have you tried any treatments such as physical therapy or medications or had an MRI? I don't think there is any age that is too old to seek improvements in your pain levels and health.

Sincerely,
Stephanies

[Laramarie]

Hi Theresa
I had surgery with Dr Hibner in December 2013. I had a left pudendal nerve decompression. While I was in Arizona waiting in Dr Hibner's office I met another lovely patient waiting to have the same surgery as me. This patient was in her late 60's and had developed PNE after having back surgery. She ended up having pudendal nerve decompression one week after me and made a remarkable recovery! I have kept in touch with her and she is still doing amazing. So there you have it...... Age does not matter. Dr Hibner treats people of all ages. He is a wonderful doctor who truly cares about his patients. Seven years is long enough to be in pain. As Stephanie asked.... I am assuming you have been diagnosed with PN issues? I just wanted you to know that there is hope and help out there.

Take care

Lara

[Violet M]

Theresa, I know someone even farther east than you who rented a minivan so she could lie down in the back and had someone drive her out to Phoenix for surgery because she didn't think she could fly. Just an idea if flying is out of the question. But I agree with the other gals that it would be good to get a definite diagnosis locally if you don't already have that and try some conservative things first, like PT, if you haven't already.

Violet

[hopeman]

Theresa

Did Dr Hibner cut your SSL. Did Hibner repaired SSL. Did you developed pelvis instability after cutting SSL?

How about your condition now? You courage me.


Hopeman

[stephanies]

Dr. Hibner cuts the SS ligament but does not repair it because it is a small ligament. I have not heard of anyone developing pelvic instability from the cutting of this small ligament. I have had this ligament cut on one side and have not had any resulting problems.

Stephanies

[theresa]

My pain started directly after pelvic surgery, So I I presume it is Pudendal Entrapment. Most of the doctors I have seen do not seem to know the difference just say pudendal neuralgia, and entrapment. Over the seven and almost eight years I have tried most everything for help including physical therapy. My lifesaving started a little over a year ago when I found a local urogynocologist who gives me 4 injections at one time, once a week of a lidocaine mixture. I get about a 2 day reprieve from this awful pain. The injections are not fun and are painful as well, but worth it for me. I also take vicoden, not so proud to say that, but they help me just a little. sometime a little is a lot. I also take gabapentin 600. I have had the courage to register at Dr. Hibner's office, now I need to take the step of having my doctor fax my file. It is puzzling to me that the CT guided injections are of no help to me, or have not been yet. I am getting one more done, that will be next week, they are also giving me another MRI tomorrow, My left side was left short after a vestibulectomy, my pain is very much in my scar area. Some mention was made that I could have pelvic congestion,I don't even know what that means. But after I get the next testing done. I am going to have them send me to Dr. Hibner. I imagine it will take a long time to get an appointment. I am going to try with all my heart and soul to get my life back again, even if I have to go by myself. someone asked me about my medication , My doctor did give me a compounded prescription of a numbing agent that included Ketamine ,Gabapentin, Locaine, mixture for external use it helps very little. It is also very expensive. Also a Diazapan suppository that is compounded as well. Please for give my spelling. My name is Linda, I was afraid to use my real name when I signed or several years ago now. Wish everyone well.

[stephanies]

Linda,

Good for you for fighting to get your life back. I hope that you are able to see Dr. Hibner as you plan and that he can help you. Please don't feel weak or ashamed for taking Vicoden. My pain doctor has really been working with me to help me understand that chronic pain patients use medications for valid reasons and that I should not care what other people think. I have been on small doses of morphine sulfate er for about 6 years. She wants me to switch to the fentanyl patch, but I am still researching it.

My best to you,
Stephanies

[theresa]

Stephanie,

My doctor also wants me to use the fentanyl patch, I did not have the courage to pick up the prescription, I wonder if it is a pretty standard drug for pudendal pain? He says the patch will level out my pain protection so I get the same amount of help all day and night. He says it takes about 3 days for you really feel the difference. I am not sure about taking it. I like to feel that I have some control of what I am putting in my body. Thank you for your encouragement. Linda

[Laramarie]

Linda and Stephanies
When I was pre op my pain doc starting me on Fentanyl 25 patch and it really helped my pudendal pain. It was amazing for a few months then we had to increase to 37.5. It is very potent and comes with risks. You cannot go in hot tubs or hot baths because it can release the medication too fast into your system. I stayed on Fentanyl for about 1 year then it actually stopped working after I had surgery. While I was on Fentanyl I still needed a breakthrough medication. I sometimes found that I didn't get the full benefit from the drug and it didn't last the full 72 hours! In the summer the patch would peel off if I was in the pool too much...... Just some minor drawbacks!
I then ended up on a 50 patch and that was too high for me. I couldn't get out of bed and was dizzy.
The 37.5 dose was perfect for me and really helped me through a very difficult period pre operatively.
Hope my personal experience helps?

Take care,
Lara