Seeing Dr.Hibner (1st time)
Re: Seeing Dr.Hibner (1st time)
I was offered botox and personally I don't see it as a solution, as it's only temporary and I don't really see how that could help. If muscle is causing entrapment, is resection of the offending muscle a possibility? I would put botox in the same category of nerve blocks or physiotherapy - they aren't a solution. Did Dr Hibner explain how botox might work or help you? Sometimes you only get answers from exploratory surgery but I know this isn't the approach any more sadly.
Re: Seeing Dr.Hibner (1st time)
Jaxi, I know you have had a really rough road which I'm sure makes it hard to trust any doctors, and I'm sad that you haven't gotten better. Unfortunately, there are some patients for whom there are no good answers, because humans just don't have all the answers for healing everyone.
I wouldn't go so far as to say that a doctor is in it for the money. I think that many doctors are way over-worked and have to juggle their desire to help patients, with the high cost of malpractice insurance and the constant fear of being sued in this country. My understanding is that the reason Dr. Hibner got into treating people with PNE is because he had a relative who needed help and saw a need for helping people with this disease. Honestly, if I were in it for the money, I would pick an easier specialty than treating patients with PNE. He may genuinely have experience with patients getting better with Botox and prefer to start with a less invasive therapy. I think it's fair to ask him what his success rates with Botox are and what the risks are before going that route.
Violet
I wouldn't go so far as to say that a doctor is in it for the money. I think that many doctors are way over-worked and have to juggle their desire to help patients, with the high cost of malpractice insurance and the constant fear of being sued in this country. My understanding is that the reason Dr. Hibner got into treating people with PNE is because he had a relative who needed help and saw a need for helping people with this disease. Honestly, if I were in it for the money, I would pick an easier specialty than treating patients with PNE. He may genuinely have experience with patients getting better with Botox and prefer to start with a less invasive therapy. I think it's fair to ask him what his success rates with Botox are and what the risks are before going that route.
Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
Re: Seeing Dr.Hibner (1st time)
Hi Farce,
I'm sorry that meeting wasn't that helpful. I have some of the same questions and thoughts that you and Violet and eraser raised. I think Botox is a temporary solution, so even if you are lucky enough to be helped by it, I don't think it's a long-term solution. And, as Violet noted, we have seen postings of people getting flares and not improving, so there is the financial cost and a possibility of it not helping. But I also understand his interest in starting with the less invasive options if there is any ambiguity about the cause. You said he thought your endometriosis may be creating pelvic tightness and that that may be the cause. It sounds like you don't think your pelvic floor is tight? Have you met with a pelvic floor pt? Sometimes they can help with diagnosing this. If the pt thought you were not tight, that might be helpful information for the Hibner.
April
I'm sorry that meeting wasn't that helpful. I have some of the same questions and thoughts that you and Violet and eraser raised. I think Botox is a temporary solution, so even if you are lucky enough to be helped by it, I don't think it's a long-term solution. And, as Violet noted, we have seen postings of people getting flares and not improving, so there is the financial cost and a possibility of it not helping. But I also understand his interest in starting with the less invasive options if there is any ambiguity about the cause. You said he thought your endometriosis may be creating pelvic tightness and that that may be the cause. It sounds like you don't think your pelvic floor is tight? Have you met with a pelvic floor pt? Sometimes they can help with diagnosing this. If the pt thought you were not tight, that might be helpful information for the Hibner.
April
Re: Seeing Dr.Hibner (1st time)
I can understand why you have some doubts about what you have been told, as there are are charlatans out there. As Violet said, from a surgeons perspective it's probably not the most profitable condition to treat. Surgeons tend to want to fix things, as opposed to pain consultants who are more likely to rip you off.
In 2026, there should be a solution for everyone even if finding it is difficult.
It is completely unacceptable to have to endure such hell, as quality of life should be a human right.
Keep fighting, my thoughts are with you.