My experience with Dr. Jarnagin and the Amniotic/Botox

[Hopeitworks]

This is my experience with Dr. Jarnagin and the Amniotic/Botox treatment on February 21st and 22nd of 2018.

First, let me say I am writing this based off of my experience and with the realization everyone has a different experience. I am also not trying to persuade anyone’s opinion of the doctor or the procedure. I believe everyone should form their own decision. I also want to state what works for one, may not work for the other. Ok… with that being said here is my experience.

The Amniotic Rheo Allograft/ Botox procedure was easier than I thought it would be. My insurance even paid for Botox. I had to pay 20% of the Rheo Amniotic Allograft injections because I had not met my catastrophic cap for the year with my insurance company.

I had my first appointment with Dr. Jarnagin on February 21, 2018, and it was a typical exam where he used a Q-tip and asked does this hurt. Then he felt my pelvic muscles and asked what hurt. I asked Dr. Jarnagin if he has had success treating PGAD sufferers and he said yes. He said it may take up to twelve weeks to feel all of the benefits. He also suggested if I feel it worked somewhat, but not fully by week eight I should come back in for a second Amniotic injection. He said it would give me the best outcome making it more effective. He said it is not uncommon to need more than one Amniotic injection at the eight or twelve-week mark. He informed me that it would take seven to ten days for Botox to kick in. He requested a six week follow up appointment, but I asked if I could have a phone consult instead since I live out of the state. He was okay with that and agreed to a phone consult for a follow-up.

The procedure was performed unguided and I was sedated. The procedure was quick! I woke up with deep aching pain in my butt cheeks; the nurse inserted a suppository which took the pain away in 20 mins. Dr. Jarnagin prescribed me Tramadol to take as needed for pain. I have minor pain in my butt cheeks which is probably from the Botox. But, I only used the medication the day of the procedure on February 22, 2018. Dr. Jarnagin said I cannot have sex, take a bath, take anti-inflammatory medications, or use tampons for six weeks.

I tried the procedure because I am willing to try anything to significantly improve or cure my PGAD. I am skeptical if this procedure will work since I only have PGAD symptoms and there is limited information about the success rate. I guess time will tell. I will keep you all updated.
Wishing everyone pain-free days!

[April]

Hope it works,

Thank you so much for the detailed report. How interesting that your insurance covered the botox when the hospital thought it wouldn't! And how great that you demanded that they send it in. I had a somewhat similar experience with Dr. Prologo's office and cryoablation. They didn't send my paperwork to my insurance even though their paperwork (and a conversation with a billing clerk) sounded like they were going to. I posted a long entry about it elsewhere (I didn't have the procedure because I didn't want to pay the full price and thought there was a chance that my insurance would have covered it if they had been sent the paperwork ahead of time.) After that terrible experience, I decided I will always demand to see all insurance approvals and paperwork before I book any flights for out-of-town procedures. I'm glad your procedure wasn't that painful, and it's very good that you can do follow-ups with a video-call. My fingers are crossed for you.

Many thanks,
April

[Violet M]

Thanks for that detailed explanation, Hope. I don't think it is possible to state how very important it is for other PN sufferers to hear detailed explanations like yours. I really want this procedure to work for you because I know how dreadful PGAD is. Your impression of Dr. Jarnagin is similar to what I had when I spoke with him by phone for the website interview. He seemed to have a genuine interest in helping his patients.

Wishing you all the best with the results from the procedure and we hope to hear more good news from you in the coming weeks.

Violet

[Hopeitworks]

Thank you, Violet and April for wishing me wellness!

[sadie]

Hope,
I will check back in in 6 weeks to see how things are going and if you need to go again,
it should be easier since you know the drill . I asked my back doctor about this procedure
yesterday and he said to try everything and don't over think it , which i have heard before.
We are all collectively cheering for your recovery.
Sadie

[anne77]

I had an amniotic allograft with Dr. Jarnigan on Dec. 28, 2017. Your description of the procedure was exactly what I experienced as well. I traveled from Jacksonville, FL to Franklin, TN for the procedure and followed all of the post procedure instructions, but I am unfortunately not one of the lucky ones who were helped:( It may be true that it takes a second injection, but I don't think I am going to try that just yet. I really have only heard of one person on this forum who had a positive result. I am hoping that if anyone else out there has had success with the amniotic allograft injection, that they will share their stories! This forum recently added a couple of doctors who do amniotic allograft injections who are in Florida (1 in Jacksonville and 1 in Orlando). I truly hope that you have a positive outcome, and PLEASE keep us informed! I have read enough to know that what might help one person, may not help another, and that there is no "one size fits all"! Unfortunately, I am in a lot of pain (in total flare right now) and do not know where to turn next. I am hoping that more people will begin posting. I feel like I have exhausted all of my options at this point:(

[Hopeitworks]

Anne77
Update:
March 1, 2018
As promised here is my 1-week update since I had the Rheo and Botox procedure. When I woke up from the procedure I had butt cheek pain. Day 3 I felt pressure in my rectum that did not hurt but was uncomfortable. It went away today. Dr. Jarnagin promised me that it was temporary. The butt cheek pain went away around day 4. I have not noticed any relief from PGAD, but my pelvic floor does feel more relaxed. It is hard to remain hopeful that the procedure will work when all I can focus on is the PGAD symptoms.



March 8, 2018
As promised here is my 2nd week post after Rheo/Botox treatment. This week consisted of what I would call a flare from the treatment. It is REALLY bad and I hope it stops soon! I have had some urine incontinence or leakage of urine when I cough. But, it’s not a full-blown stream. I have what feels like a sunburn on my lower right leg, almost like a sensory neuropathy. I am not sure if Botox can cause that to happen. Since I am flaring it is hard for me to stay hopeful that this procedure will work. Thank you all for the prayers and support it means the world to me. I received my post-op report and it stated the following:
“Allograft placement to the Pudendal Nerve bilateral and to the Obturator nerve bilateral. Trigger point injections with Botox to the Levator muscles bilateral and the Obturator internus muscles bilateral and the bulbocavernosus muscles bilaterally”.


March 15, 2018 Rheo/Botox Week 3 update:
1. On March 11, 2018 I had no PGAD all day up until 4pm and it continued the rest of the day.
2. I emailed Dr. Jarnagin about being constipated and sensory burning of my leg and he never got back to me. The sensory burning feeling in my leg went away.
3. This week I have experienced constipation. I suppose from the Botox. I am hoping this is temporary. I emailed Dr. Jarnagins office but have not heard back. So I am upping my fiber and talk Exlax and Suppositories.
4. I have a very negative outlook this week and am I trying so hard to stay positive.
5. Dana promised she would be around to check on me and I have not heard from her since.
6. I finally heard back from Dr. Jarnagin and he said Botox does not cause constipation. He never addressed my urine leakage when I cough.
7. My PGAD flare is over so I am back to get it throughout the day. But I have noticed the urge to urinate has increased. It is hard to describe but I will do my best. It feels like there is pressure on my urethra and clitoris. It does not burn when I urinate and I have been tested for IC and I do not have IC. As a matter of face I have never ever had a UTI in my entire life. I realize the urge to urinate goes hand and hand with PGAD so I am not too worried. I just wanted to mention it.
8. My PGAD is still strong and messing with my life.

March 22, 2018 Fourth week post-op from Amniotic:
Friday – Very mild PGAD that only lasted a total of 2 hours.
Saturday – No PGAD until late Saturday night, I can’t say for sure how long it lasted because I fell asleep.
Sunday – PGAD flare started mid-day and lasted the rest of the day.
Monday – PGAD flare was REALLY bad! Lasted all day! I cried myself to sleep.
Tuesday – woke up with no PGAD went to bed with PGAD. Cried on and off all day! Asked for Lyrica but my doctor said no, he wants me to see him before he prescribes me anything.
Wednesday- PGAD started around 10am and is still going strong.

My thoughts so far: I do not think this procedure worked for me! Also, the follow-up care is horrible. The Rheo rep got very upset with me because I asked a challenging question about the Rheo product. Without getting into to much detail he is Dr. Jekyll and Mr. Hyde. I will never go back to Dr. Jarnagins office!

I will update again in two weeks, but if I forget someone that reads this please remind me.
Hope

[April]

Hope,

Thanks so much for the detailed update. I'm so sorry that this doesn't seem to be working, and how frustrating to not be able to get feedback during post-op. And how awful that the product rep acted that way. You said you were asking to go on Lyrica. Are you on any meds at all right now? How are you managing the pain? I'm back to icing basically 24-7. (I don't know if my meds are becoming less effective or if I am getting worse.) So, I'm always curious to hear how others (who aren't using ice like I do) manage every day. I'm crossing my fingers and toes for you, hoping that you do start to see some improvement.

Thanks again,
April

[Hopeitworks]

April,

Thank you, for wishing me a successful outcome. I keep telling myself maybe it gets worse before it gets better. But, I feel like I have to believe that or I will put myself in a very dark place. Currently I take Ampitryiline, but it doesn't do anything.

I can't believe my PGAD has gotten worse after Rheo Amnotic Allograft injections. I have PGAD 24/7 now.

I'm just so lost and afraid of having spontaneous organisms. If that happens I don't think I will make it.

Hope

[April]

I'm so sorry. It sounds awful. PGAD has always sounded really difficult. (I just have pn.) I appreciate you sharing so much with all of us. I think your idea of trying lyrica makes a lot of sense.
I know I was really relieved when I started meds about a year ago. The benefits are less now, but I still think I'm benefiting from them (e.g., I think this, in part because I tried to scale back on my nortriptyline about a month ago, and my burning clearly increased. I've gone back to the usual dose and the burning is starting to go back to where it was before I decreased the dose).

Thanks again,
April