The Journey of a child

[pianogal]

Thru Him,
Thank you for those encouraging words! I also read this tonight which combined with your post encouraged me greatly. http://springsinthedesert.wordpress.com ... -our-faith I truly believe God showed me He would heal me through some miraculous scriptures (another long story), but as to when... it seems it will be a long journey with maybe more ups and downs before the end. I was realizing this evening that it's truly better to lose an arm or an eye than to lose your salvation, and maybe this pain is necessary for me to put all my hope in heaven and not on this earth. Last evening I watched a show about a guy whose arm got stuck in a boiler, who was stuck in a basement... and he had to cut his own arm off to survive. As he cut his arm off, the final inch was where he hit the bundle of nerves and could hardly make it through to keep going. It made me think, even if my next steps hurt more, they may be necessary to fully sever my heart from this world to hope in Jesus completely and hold my treasure in heaven... and therefore, even if it hurts more to continue down this road, I must trust my Maker to know best. Because in the end, it will all be worth it... more than worth it. And He knows the best time to heal me... even if I want it now.

[pianogal]

Mom, I don't know how I missed the part of your first post on page one when you mentioned that two weeks after the labial tear from her swimsuit is when the itching started. I am a moron. This sounds like scar tissue from the tear causing all these other domino effects of pain to happen. Perhaps a history of constipation pre-disposed her to being more sensitive down there. I can't help but marvel at how similar it is to my story which is a childhood history of constipation and then a labial tear around age 4. (just no itching) But wait a minute, if I had the same history, why didn't I have itching? hmmmm... I know. Because my tear was lower... I had a straddle fall... hers was higher, probably more clitoral, since she was on a slip and slide, she was most likely sliding on her belly and the pull from her swimsuit would have pulled the uppermost part of her vaginal skin (closer to the clitoris). Whereas for me, I was balancing on a 2-3 foot high 3 inch wide cinder block wall like a balance beam (as kids do) and I slipped and fell tearing one side of my labia, and I'm guessing my landing was on my lower portion of my labia lower vaginal area closer to perineum, imagining how a slipping fall would make you land) which caused me a different set of symptoms.

There must be some sort of surgery to remove these scars without going through all the ligaments in the back, that are unrelated to the pain. (unless, the true instigating factor was the constipation, and the little falls and tears in the labia provided extra stretch on the nerve... but perhaps it needs to be freed at the rectal level by the ligaments) Hmmm.... which is right?

When Dr. Hibner comes back from learning the dorsal nerve to the clitoris release in Austria this Feb, I am going to quiz him on how the surgery could help remove my scar tissue. Try to see if it is flexible to different scarring areas. Get him thinking...

So, my pain with sitting became full blown in fall of 2003, but my tingling started in the summer of 2002. Is my pain as old as your daughter? (wishful thinking here, after that post about the woman with the issue of blood and jairus' daughter. I know I'm taking this way too literally now. lol)

[mom]

Pianogal, God works in mysterious ways.....

To all following our journey (THANK YOU FOR YOUR SUPPORT AND PRAYERS)

Ok I have officially made the decision to home school. Things are just falling into place and that is confirmation to me. I have WONDERFUL support.
Right now our obstacle is the 3T MRI . we have a hospital here that has the 3T ( Not childrens though) however when I called they said they don't image children. Then the Dr. I was talking to asked me what the MRI was for ( if I didn't mind telling him) so I explained about PNE, he then put me on hold and came back and said " well it's news to me that we image children but if your Dr. writes the order for the 3T we are the only hosp. that has it so we will image her" GOD IS SOOOOOOOOO COOL!!!!!! He then said it might take a little time b/c they have to schedule a nusre from childrens to be present when they image her.
SO we need our Ped. to order the MRI.
This will save us $$$$$$$ as insurance will not cover the MRI when we travel to see Dr. Hibner. We need it done in our home state and we need it show what is causing the problem.


MOM

[pianogal]

Great! But please be sure to get them to get in touch with Dr. Potter's office to get their protocols for imaging. It has to be the correct angles, etc to actually see the nerve. These are things Dr. Potter discovered and pioneered, and I am guessing she shared with Dr. Kalinkin at some point. Maybe Dr. Kalinkin's office could share also if Dr. Potter can't. But please make sure they get the right angles... and use the script we've been using on this site to get all the sites of the nerve.

Lots of love!

[Griff522]

Great! But please be sure to get them to get in touch with Dr. Potter's office to get their protocols for imaging. It has to be the correct angles, etc to actually see the nerve. These are things Dr. Potter discovered and pioneered, and I am guessing she shared with Dr. Kalinkin at some point. Maybe Dr. Kalinkin's office could share also if Dr. Potter can't. But please make sure they get the right angles... and use the script we've been using on this site to get all the sites of the nerve.

Lots of love!

I totally agree! I had a 3T MRI done at my local hospital and the radiologist made no mention of the problems that Dr Potter eventually found i.e. deviated coccyx and lots of scarring in the pelvic floor. If the radiologist is not experienced with the pudendal nerve he/she will not be able to see the nerve well enough.

[miracle@work]

Dear Mom, I am not familiar with the 3T MRI. I did not have that. My doctor uses an M.R.Neurography to make his diagnosis of pudendal and other nerve entrapments. Please look it up on Internet. It is specifically designed to see the nerves. There are few of these in the world partly because only trained doctors, neurologist can read them. They are trained not only to read them, my doc spoke with them before my test to make sure they knew what he was looking for. As the post before me mentioned not all radiologist can detect fibrous tissue on a nerve. I am not sure if the 3T MRI supersedes the M.R.Neurography in visual imagery. The MRN was patened by Dr. Aaron Filler in California. You can check his site out and you- tube videos. My MRN was done at Johns Hopkins in Baltimore. I am not sure where you are located but there may be a place near you. My MRN was paid by my insurance company. I know you, as all of us, prefer to spend what little we have left of our money only on the treatments,diagnosic tools that will help. I felt I should share this info with you since you mentioned in your post to me that you are learning from others trials and errors. The MRN worked for me. It showed specifically where on the pudendal nerve the fibrous tissue/entrapment is! I held off on this info because I know you and your prayer warriors are faithful that God will lead you to the right place. I also do not want to confuse you more. I just received an email from one of my prayer warriors who read my post to you. It said keep posting! So I felt my heart was telling me to share this info with you. I read many peoples stories. For some reason my heart goes out to you and your daughter. Thank you for keeping me in your prayers. God is completing his healing in me daily. The absence of pain and other very distracting and uncomfortable feelings in that area is wonderful. I want that for your daughter too. - miracle@work

[pianogal]

dear miracle@work. I've had both an MRN and a 3T MRI. The 3T is much higher resolution than the MRN. My MRN didn't even match my pain locations (I'm worse on the right but it showed stuff on the left), whereas my 3T MRI does match my pain (shows more scarring on the right). I spoke with a prominent PN doc who said it is questionable as to whether the MRN is even seeing nerves or whether veins are mistakenly being called nerves. I've spoken with multiple PN experts who have expressed distrust of this doctor's methodology and marketing push. Also, in my humble opinion, my personal experiences with the doctor that you mentioned were very negative and my health deteriorated under his care, and I've seen others get significantly worse from procedures done by that same doctor. His written reports that he wrote about me did not match my situation (ie: he was saying I was getting better when I was telling him I was not improving at all). So, his claims to how many people he helps I find incredibly doubtful, and I'd definitely not send anyone I care about to his office. There is a strong "marketing" push that makes me only the more leery of it. There is no insurance accepted and you wait 2 hours to get a 5 minute appointment. etc...

But please forgive me if he is helping you. And if he is helping you, and you've found improvement, please let us know your story! So far, I've heard zero real patient success stories from this doc, only his own claims which, from all the patients I've talked to and my own personal experience, I doubt strongly. But if I am wrong, and just know the negative stories, I'd love to be corrected, as I'd hate to mislead anyone. I just know from the experiences I had and those of my friends, this is the last place I'd ever tell anyone to go to. So, please let us know if this doc has helped you. I am open to learn.

[mom]

I am findnig it mentally exhuasting trying to get things set for our appt. ( w/ Dr. Hibner)
Flights, making sure the MRI is scheduled getting the appt with Loretta, trying to get an MRI done here to avoid paying out he yinyang in AZ........by the way did I mention I have 4 kids and work part time................. UGHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH
Is there anything simple about this...wait I know the answer to that, NO!!!! Finacnial forms from the hospital. Love Dr. HIbner he is so kind but his staff...well GOD BLESS THEM !!!!!

[miracle@work]

Dear pianogal and everyone reading, Just thought I should clarify. I am not a patient of Dr. Aaron Filler. I do not know him so I can not say anything about him. I only know about his M.R.N. Patent because when my doc ordered mine I researched up on it to see what an MRN was and how it was different from and MRI. I had MRIs and CTs which showed nothing wrong, so why all the pain? My MRN did show the nerves. I still knew my cure was not going to come through surgery or surgery alone. I read a lot about the surgeries and found the success rate to be very low. I also found that what was thought of as success (not just a cure but sometimes just decrease in symptoms) didn't sit well with me. I am sure for some surgery is the only way as it was for Celeste. Praise God. But i have also seen/ talked to many more like me with misalignment problems that it has not. At best they had a decrease in symptoms but still very limited in lifesystle as i was without any blocks,surgery and meds. HERE IS MY STORY. As I mentioned my symptoms came on right after a car accident. I was a very active pain free mother of two until that day. My symptoms went undiagnosed for 13 months when by the grace of God he heard my cries on a thursday night and by friday morning I received a call from my non pelvic pain P.T. that she looked my symptoms up on the internet and believed I had something called pudendal neuralgia. I found this site, a pelvic pain doc. and new P.T. both from this site and the next 12 months of my life with daily pain continued. I was told by my doc there was no cure. At best he could only manage it. Being a nurse I knew nerve pain is almost impossible to manage and there were not enough pain meds in the world to manage nerve pain especially where i had it in the vaginal area. I knew the only way to cure me was to find out how it happened and reverse it dispite what i was
told. by doctors or read. God made me a certain way and I asked him to help me to find a way to put me back to the
way I was born and pre accident so I could be pain free again. I worked with chiropractors for 2 years sometimes 2 and 3
times a week. with P.T.s 20 months 2 times a week every week.(regular P.T. Before PN diagnosis and the last year with
a. pelvic painP.T. I found on this site.)All had the same problem, They could not keep me in alignment. They all knew
something was wrong. They knew something was missing. We knew it had to do with the alignment being out but no one
could keep it in. Yes even with full body massages every week for an hour out of pocket and isometric exercises and even
an S.I. Joint stabilizer. As most of you can relate underwear and pants are our enemy. So what works for a non P.N.
Person to keep joints in place does not work for us. Most exercices actually cause us pain. I have read that over and over
again on this site. So All my pray warriors prayed to find the missing link. Including the chiropractors and P.Ts. Our
answer was Jerry Hesch and the Hesch Method. His method is very simple, very inexpensive,non invasive, gentle,and you
get to keep your clothes on and causes no pain afterward. Jerry has dedicated 30 years of his life to fixing Jerry is one
of us. He knows what it is like to suffer in silence with no cure in site, and refused to listen to anyone who told him he had to. He has spent 30 years perfecting a method so the rest of us misaligned people do not have to suffer any more either. My own PT. Checked Jerry out before I went. She believes in his method so much that she is arranging for Jerry to do a Hesch seminar in our area this summer. She has already seen what it has done for me and she is so excited because
she knows the Hesch method with be able to help many more of her patients that just won't stay in alignment. So what did she and I find out that is different about the Hesch method? The Hesch method uses a very thorough technique to find all your misalignments. Jerry can find what no doctor or test will be able to tell you with just his hands. He can also read all your scans if you have the discs and believe me he will explain them better they anyone has explained them to you
before. The Hesch method is designed not only to put you back into alignment the way you were made but the
method is designed to KEEP you there. That is the difference with this technique. That is why we only get temporary
relief with other methods and why we think we are on the right tract and don't want to give up. We only get temporary
relief because the joints were only temporarily in place if at all which may have allowed the muscles to temporarily relax
when internal and external trigger points were released or acupuncture done or any other form of myofacial release. The Hesch
Method gets you Back in alignment so the muscles can now go back to relaxing and taking the pain away since the
muscles are not stretching and burning any more. When the alignment is put back and muscles and ligaments relax the
nerve now has the room it once had and is no longer entrapped. Away goes the itching,burning,tingling etc. All cases are my vary. I had much that was out of alignment and other nerves affected beside the pudendal. The Hesch method evaluation checks all your joint alignments in many different positions then chiro and PTs do and also in different positions then most scans x-rays are taken in. If you are reading this and think your p.n symptoms could have anything to do with a joint, bone,vertebrae, coccyx, sacrum,or any other misalignment you may want to check out the Hesch method
at Hesch Institute. Or get your own doc or PT to check it out for you. Mine did for me. The Hesch Institute is new so most
practitioners do not know about it. I have nothing to gain by telling any of you to call Hesch Institute yourself, except
that I know God gave me the ability to endure daily pain in a most sensitive area for the last two years with a smile on
my face and a happy heart because he knew I would preserver until my cure came and he knew thru my testimony I
would lead others to theirs too. I pray if you are reading this you are one of the people God is leading to Hesch Institute
so you can have your cure too. - miracle@work

[mom]

I am offically a home school mom...did I mention that already. I am sure that just mortifies some of you as you see ALL my spelling errors
Still having itch everyday and lots of abdominal pain ( which I believe could be pelvic pain as it is really hard for a child to pin point where the pain is exactly comming from)


PT APPT 1/26/2011
Hip held alignment again. This is good, however this leads me to beleive that the symptoms are not soley tied to the alignmnet issues.
Upper and lower GI Tues. Keep us in your prayers.
MOM