Seeing Dr.Hibner (1st time)

[Farce6537]

My two cents worth about him is he’s after money. I had redo Surgery with him and got no better. He told me not to come back! I am re-entrapped with scar tissue. Devastated!

I’m so sorry that happened! Why did you get the feeling he was after the money? Was it confirmed you had PN beforehand? Did you have any relief at all?

[Farce6537]

Hi Farce,

I had surgery with Hibner in 2018, and I also saw him in a telehealth appointment a few years ago (to try to understand why I still experienced occasional pain flares). In preparation for both my pre-surgery appointments and my more recent telehealth appointment, I provided him with a 1-2 page overview of my pn-related health history. (I think his office sent me a request for the health history before the telehealth meeting). That history included dates for symptoms, procedures, test results, and medications, all in temporal order. I also created a list of central questions that I may have also given him in advance. Before surgery, I was especially interested in finding out if he thought I was a good candidate for surgery and why. And I also asked him about his surgical procedure (because it differed from the procedure Conway used). I found the meetings very helpful.

Yes, as Violet mentioned, people who are on an HMO may be able to get reimbursed for his treatment. My HMO reimbursed me for my telehealth meeting with him because they did not have anyone in network who could help me. But, it sounds like your insurance is not set up that way.

Good luck! Let us know how it goes.

April

Thanks April! What were your symptoms and how did you decide to get surgery? Was it a hard decision to make? I haven’t been told I’m a good candidate for surgery by anyone yet. I don’t like the idea of doing it as I’m scared because I hear horror stories about people getting worse. I basically want a less invasive approach but the non-invasive approaches don’t give me long term relief. So I feel like I’m in tricky place.

[April]

Hi Farce,

I understand. It is a hard decision. You asked about my symptoms and how hard it was to decide. I had extreme and diffuse burning and also stabbing and aching at times, and I could tell it was on the left because I only had certain stabbing pains on the left. Strangely, though, sitting didn't usually increase the pain. The decision wasn't that hard because my pain was so extreme (I was using ice 24-7 and I was on several meds) that I had to do something. I also had gotten an MRI that reported signs of pne (unusual---most of the time the MRIs don't show it), and the two surgeons I spoke to thought I was a good candidate. So, at that point, it wasn't that hard. But my pain had started 3.5 years before I made the decision, so it had been a long haul.

You mentioned wanting a less invasive procedure. I actually wanted the procedure that gave the surgeon the most access to the nerve---my thinking was that if I was going to do it, I wanted to maximize my chances of it working---so I opted for the surgeon with the approach that gave him the most access. The recovery from the surgery was not that bad for me.

Take care, and keep us posted.
April

[eraser]

Hi Farce,

I had surgery with Hibner in 2018, and I also saw him in a telehealth appointment a few years ago (to try to understand why I still experienced occasional pain flares). In preparation for both my pre-surgery appointments and my more recent telehealth appointment, I provided him with a 1-2 page overview of my pn-related health history. (I think his office sent me a request for the health history before the telehealth meeting). That history included dates for symptoms, procedures, test results, and medications, all in temporal order. I also created a list of central questions that I may have also given him in advance. Before surgery, I was especially interested in finding out if he thought I was a good candidate for surgery and why. And I also asked him about his surgical procedure (because it differed from the procedure Conway used). I found the meetings very helpful.

Yes, as Violet mentioned, people who are on an HMO may be able to get reimbursed for his treatment. My HMO reimbursed me for my telehealth meeting with him because they did not have anyone in network who could help me. But, it sounds like your insurance is not set up that way.

Good luck! Let us know how it goes.

April

Thanks April! What were your symptoms and how did you decide to get surgery? Was it a hard decision to make? I haven’t been told I’m a good candidate for surgery by anyone yet. I don’t like the idea of doing it as I’m scared because I hear horror stories about people getting worse. I basically want a less invasive approach but the non-invasive approaches don’t give me long term relief. So I feel like I’m in tricky place.

I think I am the only one who has found this a very easy decision to make and cannot relate to worrying about the decision or it getting worse. If you have tried all the conservative options and they haven't worked, are familiar with the literature and are confident it's entrapment versus a medical issues causing neuropathy as much as you can be, and meet the Nantes criteria....I think it's an easy decision. I hope I don't regret the decision but if you don't quality of life currently, I went into it knowing that surgery is the best and only choice for me. I really do not see how any of the conservative options can work and I am very strongly opposed to using pain killers that simply do not work or being told breathing exercises would help by a brainless physiotherapist. We are entitled to a quality of life, just as much as anyone else.

I have the same view as April, as much access as possible and a scar can be sorted out later....least of our problems.
I think it's important to recognise that there are risks but with a good surgeon, these are small. There are a number of doctors (typically pain consultants) that exaggerate the risks and they don't know what they are talking about. At the end of the day, chronic pain is not an acceptable way to live in my book. Good luck!

[eraser]

Hi everyone,

I’m seeing Dr.Hibner for the first time in a month a half. Through telehealth first before I commit to traveling to AZ. I’m wondering if anyone here has any recent experience with him? A lot of the posts here are about 10 years old so just wanted to know if anyone has any recent info on their experience with him. How should I prepare for the appointment, etc. If anyone ever made it in person, what was your experience like? I’ve been told by the scheduler that he makes you see his PT next door. What was that like? Is Dr. Hibner worth the money? He doesn’t take insurance so it’s very pricey. I’m basically going to him after dealing with this issue for 2 years and getting worse over the course of the last 8 months. This is after Botox, 2 round of nerve blocks and ganglion blocks and nerve medicines. The consultation itself is $500 so I want to make sure I’m not wasting my time! Thank you all!

Are you looking for surgery? It might be worth considering Europe such as Dr Bollens, as he has a short waiting list and Europe is very likely to be cheaper than the states, if you end up having to self-fund.

Thank you for the note! I don’t know if I’m looking for surgery… I’m scared about that but I definitely want another opinion and I heard he’s good so I want to give it a try. Do you have experience with Dr. Bollens?

Sorry I didn't answer your question. Ask me in July and I will be able to answer better.

I've had one consultation so far and I would say very professional and straight forward. He has a lot of experience of the surgery and doesn't fob people off. He really wants to help people and give them a solution.

[jaxi123]

No relief at all after the redo surgery. Yes Dr Potter’s 3T MRI confirmed I was re-entrapped with scar tissue after original surgery and after redo surgery. Devastating!
Proceed with caution. Do all the research.

[Violet M]

No relief at all after the redo surgery. Yes Dr Potter’s 3T MRI confirmed I was re-entrapped with scar tissue after original surgery and after redo surgery. Devastating!

That's really unfortunate that you are struggling with scar tissue, Jaxi. Some people tend to form a lot of scar tissue partly due to genetics. Sadly, I haven't heard of a good way to eliminate that problem.

[Farce6537]

I posted here a couple of months ago before my appointment with Dr.Hibner and during an awful flare that thankfully I was able to get out of. The appointment went well but I was surprised that Hibner was very traditional in what he offered. He said the first step before considering surgery is Botox. Specifically, he would like to inject Botox in the oburator internus+ levator ani muscle group. Hibner claimed that the difference from my past Botox experience would be that 1) it’s in a different location two) I would be injected with 400 units of Botox instead of the 100 units that I was injected with in the levator ani muscle group the first time. I feel like based on my case and the various tries I’ve had with various treatments (3 different PTs, 2 round of nerve blocks, ganglion impar blocks, and Botox), he would be willing to offer surgery. Don’t get me wrong, I was already on the fence about surgery but I guess if he would have offered that, it would have made me feel like my symptoms were validated in a way? Because my symptoms have been BAD almost all of this year. Due to that, Hibner was my last resort. That’s why I agreed to pay $500 for a one hour appointment. Anyways, learning that an expert is telling me that I don’t need surgery yet and a previous pelvic pain specialist also telling me that I don’t need surgery has left me confused about my symptoms. Like could my issues really just be the root cause of a tight pelvic floor? That seems wild to me because I feel so much! I don’t know if I’m willing to do Botox for the price of 12k, I could technically afford it but I don’t want to use my savings and Hibner also explained that some people might need 2-3 rounds of Botox and that simply is not financially sustainable for me. Also, Botox only last for 3 months and that’s a lot of money to spend to get relief for only 3 months. He also offered a laparoscopic surgery for endometriosis since he thinks that may be causing my pelvic floor tightness leading to my pudental neuralgia symptoms. So Botox and the lap surgery for 12k. I guess he was trying to give me a 2 for 1 deal? It really sucks that there is no one solution cure for this after I have already tried so many things. All I’m thankful for these days is that I’m feeling better. I can handle wearing underwear now, I can sit for longer period of time, I can walk and go up the stairs. I tried doing plank exercises a few days ago and I was fine with no flare up! I still have outer labia itching which I’m trying to work on with a new PT who I seem to like so far. Overall, I have more pain free hours in a day than full pain days so at least that’s one thing to be happy about it.

[Violet M]

Did Dr. Hibner tell you what the risks are associated with Botox? I guess the other thing I would want to know is what percentage of people get long-term or permanent improvement with Botox as compared to surgery. I'm trying to think of anyone who has posted on this forum who has had long-term improvement with Botox. I can't think of anyone off hand. There are some people who have posted here who have gotten worse from Botox. Of course, this is only anecdotal results and not a scientific study. I know that my urogynecologist discouraged me from getting Botox since it was just a temporary help.

I can understand why Dr. Hibner would want to start with a less invasive treatment before moving to surgery, but I also understand your disappointment with the recommendation. If you don't have answers to the questions I posed above, then possibly you don't have enough information yet to make a truly informed decision. Since you are somewhat better, you especially want to think twice before doing anything too invasive.

Violet

[jaxi123]

I got no relief from his Botox treatments nor anybody else’s Botox treatment again I think he’s after money and way overcharges