My experience with Dr. Jarnagin and the Amniotic/Botox

[sadie]

To all that consider old antidepressants like Amitriptyline,

Before I had PGAD from the PNB with Depo Medrol, I had burning and electrical shocks and started taking 10mg of Amitrip... and to get relief I went up to 60mg to 70mg, I can not remember exactly. But it really helped and I could work full time , which was amazing.

BUT...

I think Lexapro is a newer drug with less side effects and if it were me I would consider taking 5mg of lexapro and maybe working myself to 10mg .

I took Amytrip for 4years and in 2010 after feeling ticks and sudden jerks, slowly over time (for instance, my shoulders in unison would shrug for no reason , or my wrist would jerk away from the key board when typing), I woke up a month or two later with full blow dystonia, so be carefully to all who are reading this and are over 50. Amitriptyline tends to be more apt to turn on you the longer you are on it and the older you are. I was 52 when it turned on me

Prayers for everyone for guidance and peace,
Sadie

[Violet M]

Hi Hope,

That is really disappointing that the injections have not helped you. I guess there is still a chance it might help since you aren't at the 6 week point yet but it's not too soon to start thinking about a back-up plan. I tried a number of things before finding what worked for me. In the meantime, you might want to consider trying buprenorphine while you are searching out healing options. I know one woman with PGAD who uses it and it takes the PGAD (and pain) away.

Violet

[Hopeitworks]

Violet,
My doctor will not prescribe buprenorphine, they won't even prescribe my Lyrica. But, thanks for the suggestion. I have very little hope that in two weeks I will be healed! I just want it to be known the Rheo Amniotic can make you worse! Even though Dr. Jarnagin swore it would not make me worse. I would call him and ask if this flare is normal, but due to the lack of follow up several patients have received including myself I know he will not return my calls. At this point, I do not believe anything he says, along with the Rheo rep.

I have already looked into backup plans and will share soon.

[anne77]

Hope, I feel your pain and disappointment:( I only have PN, but the allograft effected me the same way. I am in total flare and have taken to my bed these last few days. It is so hard being hopeful, only to be let down again. I usually am researching the next thing to try, but for today, I just don't have the energy. I find comfort in a heating pad (although I know it's not the best thing for inflammation), but then I do follow up with icing. I have tried various prescribed medications, but get minimum relief and they all seem to have side effects. I keep praying that there will be some big medical breakthroughs for those of us who are suffering so. Thank you so much for your very detailed journey with Dr. Jarnigan. Everything in the account of your experience is almost identical to mine. When I informed their office that the allograft did not help me, they acted so surprised, and said that "maybe I needed a second injection"! At least their office did fax a copy of my records to my local urogynecologist here in Florida. The only saving grace is that my insurance covered most everything--I spent a whole lot of money on a "paid study" for stem cell injections in AZ last year, and it did not help me at all either. Both doctors claimed that they were able to help many patients with PN. They were either exaggerating or not truthful regarding the outcomes. In each instance, there was only 1 person who claimed they had great outcomes. I have come to believe that these people were actually working for these doctors ("moles"!)and there is no truth to their "remarkable outcomes". Either that or no one is reporting their successes on this website! I guess all we can do is encourage one another to "keep on keeping' on", and pray that there will be a cure coming soon:) There is a national meeting held in Chicago in August which is for the benefit of doctors in this field. I came about it just googling a bunch of stuff. At any rate, I hope there are doctors out there who really care about this horrible illness, and we can all truly be helped and even tpainfree one day!
God Bless, Anne

[Hopeitworks]

Anne,

I know there is a "mole" that tells everyone Amniotic will work. I am so mad that this procedure made me worse! Thank you for sharing your story with me. I have a secret group on Facebook and I know my members would love to hear your story. A secret group means no one can tell you are in the group besides members of the group. Each member is screened to ensure that are have PN and or PGAD. I have found the group to be really helpful. If you are interested please let me know.

Are you still worse after having the procedure? How long ago did you have it done?

Hope

[Violet M]

Hope, is it your GYN or PCP who won't prescribe the meds or do you have a pain management doctor? My obGYN would not prescribe anything so I eventually went to a pain management doctor. I was reading your account of all the different injections you had and I as a little dismayed that they gave so many at once, including Botox. I do know people who have gotten worse from Botox. At this point I'm not sure how you would determine whether it's the Botox or the amniotic allograft that made you worse. Just one question though -- did they also do pudendal nerve blocks and if so did they use steroids?

I don't know if you've read my posts about my best trick for pain relief -- with hot/cold sitz baths. You might want to try that now during this phase where you are having a flare-up and you would like to at least get back to baseline. The alternating heat/cold brings fresh blood to the area and takes toxins away and may help bring healing. If you do have a nerve entrapment, it won't help heal that but it might give you some pain relief when you are going nuts.

Violet

[Hopeitworks]

Violet,
I didn't have all those injections done at the same time Dr. Gordon, Neuro-Urology, Pelvic Medicine & Pelvic Reconstructive Surgery. He will prescribe it he just wants to be extra cautious and wants to meet with me first. But he can't get me in soon enough.

Question - how will a pain management doctor help me when I only have arousal?

I hope it is the Botox that made me worse and it goes away when Botox wears off.

Hope

[Hopeitworks]

Another update:

I met with my Physical Therapist today and she agreed the Amniotic and or Botox made me worse and recommended a pain management doctor. She is going to call him and share my history with him. I hope to get an appointment soon.

I am sharing my story not to persuade anyone from seeing Dr. Jarnagin. I just want to share my thoughts and experience.

I feel the "mole" that states Amniotic has a 90% to 100% success rate needs to share where all these patients are that have been cured. Because I have only talked to one individual besides the mole that has been cured. Why can't anyone find these patients???!? I have searched Facebook and this site and I can't find the 400 people that the mole claims have been cured.

The data sheet that was given to me does not say Amniotic is 90% successful. Please read the attached study.

My take-home message to everyone is READ BETWEEN THE LINES about Amniotic.

Wishing everyone pain-free days!
Hope

[Violet M]

Thanks for posting that article, Hope. I wonder if it is going to be accepted for publication, although it seems like if it was going to be it would have been accepted by now.

When you first joined the forum you listed pain as one of your symptoms. If your pain has gone away, that is a good sign it seems.

These are my symptoms:
• Sitting becomes intolerable.
• The pain is often not immediate but delayed and continuous and stays long after discontinuing activity that caused the pain.
• Often the pain is lower in the morning upon awakening and increases throughout the day.
• Pain after orgasm.
• Strange feeling of uncomfortable arousal without sexual desire. Mostly just a tingling feeling.
• Urethral burning (intermediate)
• Feeling like the bladder is never empty or feeling the need to urinate even when the bladder is empty.
• Urinary frequency.
• Pain during and after intercourse.
• Minor low back
• The symptoms are bilateral.
• The front of my things burn
• Sharp electric type pain in groin area when sitting.
Do these symptoms sound like PGAD?

But even if you don't have pain, PGAD is considered by Dr. Echenberg to be a pain syndrome. So I think it is worth seeing a pain management specialist to see if they can help you.

Back when nerve blocks were really popular we were all asking why the doctors did them because on the forum we just weren't hearing from the patients who had success with them, even though the docs were saying people were having success. We were speculating that the people who got well just didn't come to the forum. So, I don't know -- maybe it's the same with amniotic injections, although to be honest, I have my doubts about both nerve blocks and amniotic injections unless we can hear more success stories. I'm sorry to hear the injections haven't been a cure for you.

Violet

[Hopeitworks]

Violet,
My symptoms have changed I forgot to update you:
These are my symptoms:
• The pain is often not immediate but delayed and continuous and stays long after discontinuing activity that caused the pain.
• Often the pain is lower in the morning upon awakening and increases throughout the day.
• Strange feeling of uncomfortable arousal without sexual desire. Mostly just a tingling feeling.
• Urethral burning (intermediate)
• Feeling like the bladder is never empty or feeling the need to urinate even when the bladder is empty.
• Urinary frequency.
• Pain during and after intercourse.
• Minor low back
• The symptoms are bilateral.
• The front of my things burn.

I was referred to pain management today.