DR HIBNER WONT OPERATE

Many physical activites such as sports, pelvic surgery, etc can all contribute to PN
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Quilter 2
Posts: 163
Joined: Fri Sep 17, 2010 6:24 pm
Location: North East TN

Re: DR HIBNER WONT OPERATE

Post by Quilter 2 »

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 :lol:

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 :P

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
Five pudendal nerve infiltrations with good results.
Sixth Injection left me with more burning, more pain, pain in buttocks.
Botox shot didn't notice any difference
Physical Therapy - Aquatic and Myofascial
External and Internal Manual Therapy on the obturator muscle.
3T MRI with Dr. Potter
2nd opinion with Dr. Hibner in Phoenix
Loretta Robertson PT Phoenix
Decompression surgery Nov. 1, 2011
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Quilter 2
Posts: 163
Joined: Fri Sep 17, 2010 6:24 pm
Location: North East TN

Re: DR HIBNER WONT OPERATE

Post by Quilter 2 »

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
Five pudendal nerve infiltrations with good results.
Sixth Injection left me with more burning, more pain, pain in buttocks.
Botox shot didn't notice any difference
Physical Therapy - Aquatic and Myofascial
External and Internal Manual Therapy on the obturator muscle.
3T MRI with Dr. Potter
2nd opinion with Dr. Hibner in Phoenix
Loretta Robertson PT Phoenix
Decompression surgery Nov. 1, 2011
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Charlie
Posts: 214
Joined: Fri Sep 17, 2010 11:48 pm

Re: DR HIBNER WONT OPERATE

Post by Charlie »

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.
Tried numerous medications as well as a long period of myofascial physical therapy combined with meditation/relaxation. My pelvic floor muscles are now normal and relaxed on exam ( confirmed by many Pelvic floor PTs) yet my pain remains the same. Also have intense leg pain. Deciding on next treatment.
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Karyn
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Joined: Fri Sep 17, 2010 12:59 pm
Location: Lowell, MA

Re: DR HIBNER WONT OPERATE

Post by Karyn »

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
Ultra Sound in 03/08 showed severely retroverted, detaching uterus with mulitple fibroids and ovarian cysts.
Pressure and pain in lower abdomen and groin area was unspeakable and devastating.
Total lap hysterectomy in 06/08, but damage was already done.
EMG testing in NH in 04/10 - bilateral PN and Ilioinguals
3T MRI at HSS, NY in 09/10
Bilateral TG surgery with Dr. Conway on 03/29/11. Bilat ilioinguinal & iliohypogastric neurectomy 03/12. TCD surgery 04/14.
donstore
Posts: 463
Joined: Mon Nov 08, 2010 6:13 am
Location: San Francisco

Re: DR HIBNER WONT OPERATE

Post by donstore »

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
Mild to moderate PN for 5 plus years, pain controlled by lyrica and opiates.
Nerve block (unguided) 9/10 Dr. Jerome Weiss - sciatica for 5 months but got numb in painful perineal/scrotal area - he diagnosed entrapment - but no more cortisone for me
Potter MRI 5/11 - rt STL entrapment of PN at Alcocks
Consult with Dr. Hibner Feb. 2012
Bilateral inguinal hernias diagnosed by dynamic ultrasound - surgery on 6/20/13
Feeling a little better, a few more months will tell
Missingmylife42
Posts: 101
Joined: Sat Oct 02, 2010 1:30 am

Re: DR HIBNER WONT OPERATE

Post by Missingmylife42 »

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.
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A's Mommy
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Joined: Fri Sep 17, 2010 12:46 pm
Location: Pennsylvania
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Re: DR HIBNER WONT OPERATE

Post by A's Mommy »

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
Daughter grew completely on left side of pelvis
Multiple uterine surgeries to fix uterine adhesions, septum, and endo
Had all the conservative workups done, 3Tesla (Potter), recovering from L sided TG (Hibner) 11/10, Botox 6/11 failed, bilateral anterior PNE decompression (distal Alcock's/perineal branch), Aszmann, Vienna, 10/11; dx'd with CRPS Type 2, 12/11, Ketamine @ CCF 2/12, doing 75% better PRAISE JESUS!
http://fighting-pne.blogspot.com
http://www.thepelvicmessenger.org
Faith
Posts: 697
Joined: Fri Oct 15, 2010 5:15 pm

Re: DR HIBNER WONT OPERATE

Post by Faith »

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.
-11/08 vulvodynia began around conception of first & only pregnancy
-3/10 sacral/sitting pain began after SIJD manipulation
-Progressive widespread pain- central sensitization
-PT, meds, injections, botox, ESWT = debilitated.
-5/12 Potter MRI - scarring of left ST, coccygeous & posterior alcock
-12/12 - left FAI/labral hip tear surgery
2014-2019 managed w/ gabapentin, massage, and lifestyle mod
2020 - big flare up
www.thepurposeofpain.blogspot.com
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