Amniotic Allograft Injections

[Hopeitworks]

Thank you, Violet. I sure hope I figure it out sooner rather than later.

[jconlaub@yahoo.com]

I was told that the amniotic allograft doesn’t work. I’m going for a second injection on 8/8. Please tell me that it does!

[Hopeitworks]

It didn't work for me. It actually made my symptoms worse for a few months following the procedure.

[Gmatch]

My daughter got PNE after an ovarian cyst removal. We have seen PTs and last week met with Dr Jarnagin. He want to do botox with the amnotic fluid injections. She is terrified of both. She is 31 and suicidal and bedridden. Our entire family is sick with worry. We don’t know where to begin. We started at urologist and they say IC but the treatments made it worse. Cathing her was so painful. I would love to hear if Dr Jarnigan has helped many people. He also just started doing SoLa cold
Laser therapy. This seems
Like sending at ant to carry an elephant. Would greatly appreciate any insight. We are just getting started on this journey.

[Hopeitworks]

Gmatch,

I wish I could tell you what you want to hear. Dr. J made me worse with botox and Amniotic injections. Dr. Gordon gave me my life back and I wish I would have gone with him before I tried all the treatments and surgeries. He place and interstim from Boston scientific, with medtronic lead on my S3 and S4 nerves and I am doing great! Good luck and if I can help please let me know.

[Violet M]

Hi Gmatch,

What works for one person doesn't always work for someone else. Interstim does not always work for everyone either. Ideally, if you can figure out the root cause of the problem and fix it or target the treatment to that root cause, that is the best route to go, but sometimes you can't figure that out so you have to use pain management solutions like interstim (neuromodulation). The type of interstim would need to be targeted to the areas that are affected. Interstim at S3,4 might not work for someone who also had problems in the area innervated by S2.

In my opinion, based partly on what my urogynecologist told me and from what I know about Botox from other patients, Botox can help temporarily but it is not a long-term solution. Some people do react poorly to it. It might help relax the muscles for several months but in the long term, it can also atrophy them.

Regarding amniotic allograft injections, they have helped some people but they don't help everyone. Personally, I would only try them if I thought I had nerve damage not related to a mechanical or musculoskeletal problem. If the nerves are damaged from a disease or injury maybe it could help, but if the nerve is entrapped in scar tissue or in between ligaments, I'm not sure how it would help because the nerve will continue to sustain injury from the ligaments or scar tissue irritating it.

Based on your daughter's history, it sounds like her nerve damage occurred as a result of surgery with either immediate injury to the nerve during the surgery, or scar tissue developing after the surgery and impinging on the nerve. How soon after the surgery did her pain start? Has she had any imaging such as a pelvic 3 T MRI that shows whether or not there is scar tissue in the area of the pudendal nerve that developed possibly as a result of the surgery? Where is her pain, primarily? I'm just not sure amniotic allograft will help if there is scar tissue impinging on the nerve and entrapping it. But on the other hand, there is the possibility that her nerve was somehow damaged during surgery but there is no scar tissue impinging on or entrapping the nerve. In that case, then something that might possibly promote healing of the nerve, such as amniotic allograft, might help. There have been cases where a stitch was inadvertently put through the nerve. I am not sure if the surgeon got anywhere close enough to the pudendal nerve to have accidentally stitched it but you have to consider all possibilities.

Cold laser therapy can be very effective on scar tissue but my understanding is that if the scar tissue is deep in the pelvis, cold laser therapy would not be able to reach it. If the scar tissue is close to the surface, then it might be helpful.

Has your daughter been evaluated by a physical therapist who is trained in treating patients with pudendal neuralgia? Sometimes they can help determine if the problem is mechanical or musculoskeletal.

So, in summary, these are just my thoughts based on my experience and moderating the forum for many years. It is not medical advice because you can't really give accurate advice via the internet. But I think it is important to choose treatments that make sense, based on your daughter's history, symptoms, clinical exam, and diagnostic tests. You have to be a Sherlock Holmes, trying to figure it out.

I was mostly bedridden and suicidal at one point but I have a great life now. I think with the right treatments your daughter has a chance to get well but it will not be an easy or cheap road. You are a great mom trying to help her through it but it must be extremely painful for you to watch her go through it. Stay strong and don't give up. She will get through this.

Violet

[Gmatch]

Violet,
She has not had a an MRI yet but one is scheduled for Monday. A family friend who is an orthopedic surgeon is going to do that for her. Her gynecologist and urologist both felt it was IC but when we went to a physical floor specialist she diagnosed it as pudental nerve pain. She said she can feel the pudental nerve and it is swollen. She also said that one of my daughters hips is thrust backward the other is forward and the sacrum is frozen and without these things being addressed nothing will help. But every time my daughter goes to see her she is in worse pain than before if that is even possible. This pain actually started after what seemed like a UTI but she was also doing some squatting with weights before that and she is a tiny little thing and doesn’t work out very much. And exercise definitely makes it much worse. What to do in the meantime she does have a amniotic and Botox appointment with Dr. Jarnigan on the 17th of this month. Based on this information would you advise skipping that and just trying to get out of some sort of pain to continue the PT. I don’t know how she can continue the PT when it is causing her so much pain.

[Violet M]

I think it is possible your daughter's PT is correct; however, I was in a similar situation as your daughter before my PNE surgery. I knew it was a mechanical problem with pelvic misalignment and pelvic instability but the PT was too painful. I was fortunate that with surgery to release the nerve from between the ligaments I was able to get the pain reduced and eventually get into an exercise program to strengthen the pelvis, and I also had prolotherapy to strengthen and heal the pelvic ligaments. It was a long process and it's not the right solution for everyone but if other therapies aren't working you have to consider all options.

Violet

[MelodyW]

GMatch,

I saw a couple of your posts. I just wanted to say that you may want to consider the possibility of spine involvement in your daughter's case.
My sacrum, SI joints, hips and ilium bones are also all severely twisted. Part of my pain was brought on after an appendectomy surgery so abdominal adhesions are definitely contributing. I wonder if your daughter can find someone to treat possible adhesions and through visceral mobilization, massage, or acupuncture. I'm glad your daighter's PT was able to diagnose some of the dysfunction.
I am in a facebook group for Ehlers Danlos and Tethered Cord patients and some of them have pelvic pain also.
In my case, I had underlying severe musculoskeletal malalignment my whole life but no pain until age 22. As someone with connective tissue disorder, my appendectomy definitely exacerbated my previous and already severe issues.
I don't know for sure if your daughter has connective tissue disorder, but I read about it before my pain and realized I had it in college. Some of my bone twisting symptoms sound very very similar to your daughters. It can take a while to get a diagnosis (years) so instead I am just trying to find PTs or body workers who treat it.
I have read of a Trish at Healy PT in New York who helps patients.There is also something called the Muldowney Protocol by Kevin Muldowney. I haven't tried it but it's gentler and tailored to people with EDS.
I've had 8 or so MRIs now with no significant findings but tethered cord and even spinal birth defects are not always viewable on imaging. Dr. Petra Klinge, an EDS-aware neurosurgeon in Rhode Island is someone I am looking into now. She treats tethered spine and spinal birth defects and finds problems on MRIs which other surgeons and radiologists miss.
There are also spinal issues which show up differently in people with EDS or don't show up at all so Dr. Klinge diagnoses partly through symptoms. I guess the main point I'm trying to make is you kind of have to seek out knowledgeable and renowned doctors or they probably won't read the MRI reports accurately, which is happening to me.
I am 24 but also bedridden and severely depressed to the point of suicidal ideation. I have a home health aide through my insurance which has helped a lot with ADLs.

[Violet M]

Well said, Melody. It sounds like you have been through a lot already at your young age but it's apparent that you have done a lot of research and I hope you will find the right treatments that will help you. Stay strong. You are a brave person.

Violet