Amniotic fluid injections

[Ray P.]

I forgot to throw in scar tissue pain from 2 surgeries as well as muscular and nerve pain. What is it, all three?

[Laramarie]

Hibner asked me specifically if the suppositories worked, and I said yes! That was his reassurance that it was muscle spasms. Loretta (his PT) examined me and definitely felt that my pain was more muscle than nerve in the rectal area. I also had "broken glass" pain the perineal area. Nerve block done by Hibner made me numb for a good 30 hours and now I am pretty much pain free in that area (nerve pain gone). Nerve block done by the radiologist (same day) in the pudendal nerve- 24 hours numb but I still could not sit and I had the twisting feeling in my bottom (muscle spasm). That's how Dr Hibner said he can tell the difference between nerve pain and muscle spasm. I hope this helps? This was all done last week.....

[nyt]

I was one of Dr. Hibner's patients that had the amniotic fluid injection. It did NOT help at all and I know I am the one at this point that is deemed unsuccessful. There are several possibilities why it did not help me, some are my thoughts and some are from when I talked to the company: Lots of scar tissue from multiple surgeries, multiple comorbidities (I have a lot more than just PN going on), nerve is too damaged, maybe they need to inject more fluid, maybe they need to inject multiple areas, or maybe this needs to be done more than one time. I am very disappointed that it did not help.

I know some other doctors have been critical of Dr. Hibner but he is one of the only doctors that I am aware of that is willing to try new therapies besides surgery to help us with PN. For that I am forever thankful that he is willing to think "out of the box" and try new things. He has been the leader in botox, Ketamine, suppositories, now amniotic fluid injections. They are starting RF of the pudendal nerve and some type of bioelectrical stimulation that I am looking into.

[stephanies]

Thank you for sharing your experience nyt. I am sorry this treatment did not help you. It sounds like Dr. Hibner and the company are still trying to figure out how to maximize benefits from this type of treatment and hopefully they will get enough information to be able to do that at some point soon. My best to you,

Stephanies

[Laramarie]

Hi nyt
When did you have the amniotic fluid injection with Dr Hibner? Was it pre op or post op?

Hope you are doing well.....

Lara

[nyt]

Mine was done post-op.

[Dave]

Where does the amniotic fluid come from? A pregnant donor?

[nyt]

It is collected at the time of a scheduled C-section. All donors are checked for communicable diseases prior to the collection and again at the time of collection and the fluid itself is tested at the time of collection. There amniotic fluid is FDA approved and they go beyond the requirements for safety testing.

[kathyd]

Hi
to add to Ray Ps question,
How do we know if a pain is muscle or nerve related?.. and he's right about scar tissue for me too....as my anal pain started 3mos after a surgery and scar tissue is thought to be at least one reason for it.
But lets say you failed to get relief from just about all nerve blocks given to the PN and the painful areas...(blocks were putt in various spots --- painful of areas of buttock. and trans-viaginallt and I believe an epidural in the spine a few years back in the spine..
Does this mean that the nerve is not the biggest issue? (in some cases the blocks were not guided by Flouroscopy or cat scan, but most were.. so one would hope they got the right spot... altho I hear if they miss even by a tiny margin the block can fail

So that leaves muscles.. I clench the muscles of the pelvic loor unconsciously, and have since this pain issue started but even more so now out of fear, and bracing against the pain. I stand up all day ( but lie down on ice for breaks a lot)

My Pt Amy S. actually noticed me clenching my abdomen muscles as I spoke....she saw that pattern in other patients also.. She thinks this is closely connected to pain issue..Im hoping to be able to see her soon, but she is booked solid and logisitics are tough since I can't drive that far.
Anyway Im trying to figure, like you guys, is it muscle or nerve or a combo and Im wondering what to do next. ...for pain.
ThX
Kathy

[jaxi123]

Has anyone received any relief with these injections?