My recent evaluation with Dr. Hibner

[jaxi123]

No options left
Nothing has worked
Just want to go to sleep and never wake up

[Violet M]

Makes me sad to hear you feeling so down, Jaxi. You usually have a lot of fight in you. Do you have any options left at this point?

Aunt Netty, wishing you a successful surgery. I didn't see pudendal nerve decompression on your numbered list -- unless I am blind.

Violet

[April]

I'm sorry Jaxi. Have you tried a stimulator yet?

Aunt Netty, it looks like they are addressing a lot of issues. But, as Violet said, it doesn't look like they are doing decompression. And they have a bilateral block planned. Do you know if that is diagnostic? Or just a possible treatment to help reduce inflammation from the surgery?

April

[AuntNetty]

Jaxi....please keep hope. My mom always tells me "Fake i till you Make it". I wish i could fix you. Try to appreciate all the little joys and moments in life.

April and Violet....no decompression is scheduled. Guess he is hoping this starting plan will calm down the pudendal nerve. I don't know what i'm doing and i'm scared....really scared. Can't wait for time to pass. Want to get rid of pain and be my old self again, but scared to get worse. Paperwork says they discussed all risks and benefits with me....but they did not. Worry about all the bi-lateral stuff too because i have no pain in right side and want to keep it that way. Looked up info on bladder hydrodistension, they say that is painful and can leave your bladder with scar tissue. and the inguinal neurectomy...looked up stats on that working and from what i understand not large success rate. Clueless in Ohio. I can only trust Hibner who is doing my pudendal blocks himself during surgery. Am I crazy?

Aunt Netty

[AuntNetty]

April and Violet,

The surgery plans were not discussed with me when i was in Phoenix. They did show me on a model all the areas where my pain is and tell me they think it could be entrapped. When i was there i was just going to get botox into left vag wall, obturator, and psoas the next day. Then they couldnt get me into schedule. Then i received paperwork in mail detailing all of the other procedures/surgery they are planning on 15th when i return. I don't even know what i'm doing. Do you think its because when they repaired my cystocele/rectocele w vaginal hysterectomy here in Ohio they sutured it all by hand with polysorb???....not sling kit???? Why did Hibner MRI show i still have cystocele/rectocele/and now peritoneocele???? If he thinks its from that why wouldn't he be addressing that??? or is he addressing it with the plan he gave me??? i Hope so. I don't know what i'm doing. I know when i had my last surgery in 2015 when they cut two nerves "they could not identify" quote from operative report...i woke up with zapping pain in sit bone area that kicks my left leg like i'm getting electrical shock and genital numbness and could not feel myself pee. I hope i'm doing the right thing...find myself second guessing everything...i don't understand this stuff...but i understand pain. They did say the areas of my pain are fed by pudendal nerve which could be entrapped. They think the leg/thigh issue is from inguinal nerve..why am i so afraid of inguinal neurectomy. I am not educated enough to know what i'm really doing. The more i try to learn and advocate for myself, the more confused i am. What happened to my I am so Happy and Hopeful????nerves i guess. Are they trying to rule out less dangerous surgeries first to see if it helps. I wish i could talk to Dr. but they say that is why i have presurgical appt right before surgery...then what i say no way and stay like this...after i already booked flights, had my sister take off work, booked condo...what am i doing???

[Patty]

Aunt Netty
I am no expert but if you have this many questions going into major surgery you should consider rescheduling. I get you have flights, family members & overnight
accommodations booked but you have legitimate questions that need answers. From what I've read about Dr Hibner he is an experienced & caring physician. I would encourage you to see if he would do a phone call answering your questions before moving forward. I would ask a trusted friend or family member to be
there with you to write down what he says. When I was at the height of my pain I could not focus on anything my pain was so bad. I hope things
go well for you.

[Violet M]

I agree with Patty --- you need your questions answered before surgery. I know many people who have gotten well going to Hibner but I think you need to know what is going on. Make sure you are the right patient to be matched with all of those surgeries and why.

[April]

Hi Aunt Netty, I agree as well. It really sounds like a phone consult is needed, and I would record the conversation. I don't know how to record when I'm on the phone (though it's probably possible), so I just use my husband's phone as the recording phone. I always do this for significant appointments and all phone consults, and I'm always surprised by how many things I'd forgotten or missed when I replay it. It's usually a good idea to create a list of questions and follow-up questions (if he says this, then I'll ask that) if possible. I would probably start with a question about why they are doing each thing and what it will achieve and then I'd probably ask why they are not doing decompression surgery (given that they identified the pudendal nerve as a source of pain for you). And I'd probably ask if he thinks you would be a good candidate for that surgery after these procedures are completed.

April

[AuntNetty]

Hello,
Just want to say i truly appreciate your input and advise. Basically, I have called Hibner's office few times. The only person i can talk to is Korina...Hibner's schedular. She has explained to me "That is what your pre surgical appointment on Friday is for". But surgery is Monday. So I have committed, maybe i will never graduate from the school of hard knocks...anyway I have already booked condo and flights and scheduled surgery and made arrangements for my children and my sister took off work for a week to help me (God knows I love her). I am trusting they know what they are doing and that is why they mailed me this surgery plan. I am still scared, but I at least feel better that it's Dr. Hibner and his team vs. local General Surgeon in Niles Oh. I have to just commit and go with it....or stay like i am which is not really an option, as time has proved i'm not just going to improve with time or trying not to sit. Here I go>>Clueless in Ohio. Thank You all again...just nerves i hope. But really they should have called and discussed all these plans, since that wasn't the plan when i left Phoenix. Pray for me and i am already praying for all of you. See you on the other side, will update when i finally return and am able.
Love
Aunt Netty.

[Violet M]

Sorry, I don't know exactly how the system works with Hibner's team but I have heard it is unusual to get a phone consult with him. So, it sounds like you will have to settle with making another trip to get your questions answered which I can understand is very frustrating. It is good that you have a pre-surgery consult at least so you won't be going in completely clueless.

Yes, I will absolutely keep you in prayer that all will go well for you.

Violet