The Journey of a child

Welcome to HOPE. We have tried to provide a place for newcomers to make their introductions. We will try our best to make you welcome and guide you through our website and Forum and assist you as best as we can through any questions you have regarding Pudendal Neuralgia.

Re: The Journey of a child

Postby Griff522 » Thu May 23, 2013 3:13 pm

I am praying that this is the answer you have been searching and fighting for. You are a truly amazing mother and I admire your courage and determination in finding the cause of your daughter's pain. God bless you and your precious daughter and may her relief come very soon.
Burning vulva pain began 10/09
Treated for SIJD 9/10 and burning stopped and pain localized to rt side
Surgery w/ Dr Dellon 5/11 - didn't help my pain
2012 - PT, massage therapy, and ART therapy from chiropractor
MRI showed labral tear and US of groin found hernias
2/13 - surgery for sports hernia
5/13 - still have obturator internus spasms
5/13 - appt with ortho spine dr
8/16/13 - Arthroscopic surgery to rt hip for FAI and torn labrum
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Re: The Journey of a child

Postby mom » Mon Jun 17, 2013 2:57 am

TEST RESULTS all tests came back NEG for tic borne illnesses. Rheumotologist said he saw nothing that would indicate a need for her to continue seeing him. He did refer us to be fitted for shoe inserts as she is very flat footed.
REHAB APPT. 6-14-13
Upon examination the foot Dr. (of all people) does this pressure point test on the bottom of her foot and says" does this hurt any where?" Of course she says yes, and he asks her where...she replies my knees and the back of my knees. His response "thats what I was afraid of" I ask him why??? he says....she is extremely tight. (NO KIDDING!) I pursue with my rant apologizing that it is not directed at him but I have asked for COUNTLESS DR'S to look at her MUSCLES!!!!!!!!!! He was very kind and asked if he could hvae their PT gal come in....she did her examination and said there was DEFINITE cause for concern with how restricted she was.
FRUSTRATION!!!!!! :x :x :x :x NOt at her of course but WHY DONT DR's LISTEN TO THEIR PATIENTS??????
Any way she wrote a request to our PED for REHAB where she says she will personally do a muscle work up if we get the refferal. She says ther are lots of muscle diseases that most doctors dont think of.(if you recall I have been questioning that the severity of her tightness of leg muscles is what might be compressing her pudendal nerve)

Anyway that is our update and I will post again after we see the PED. PLEASE pray we get the referral. This is a step in the right direction :D :D
Mom
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Re: The Journey of a child

Postby janetm2 » Mon Jun 17, 2013 6:29 am

Mom,
Sending all the best vibes your way for ypur daughter. I not only hope the referral comes along but the treatment starts to relieve some pain. A longer fight than should be necessary but it sounds like you found the right people.
Keep us posted.
Janet
2007-08 pelvic muscles spasms (per colon-rectal dr.) treated by ElectroGalvanicStimulis(EGS). 6/27/10 sat too long on a hard chair- spasms, EGS not work Botox help, spine pain dr cortisone shots in coccyx help, still pain, PT found PNE & sent me to Dr Marvel nerve blocks & MRN, TG left surgery 5/9/11. I have chronic bunion pain started/surgery at age 21. TG gave me back enough sitting to keep my job and join in some social activities. I wish the best to everyone!
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Re: The Journey of a child

Postby nyt » Tue Jun 18, 2013 12:15 pm

Prayers are sent for your hassle free referral and appropriate treatment.
2/07 LAVH and TOT 7/07 TOT right side removed 9/07 IL, IH and GN neuropathy 11/07 PN - Dr. Howard
6/08 Obturator neuralgia - Dr. Conway 11/08 Disability, piriformis syndrome - Dr. Howard
4/09 Bilateral obturator decompression surgery, BLL RSD - Dr. Howard
9/10 Removed left side TOT, botox, re-evaluate obturator nerve - Dr. Hibner
2/11 LFCN and saphenous neuralgia - Dr. Dellon 2/11 MRI with Dr. Potter - confirmed entrapment
5/11 Right side TG - Dr. Hibner 2012 Left side TG - Dr. Hibner
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Re: The Journey of a child

Postby mom » Sat Sep 28, 2013 4:15 am

just wanted to post, we did not get anywhere with the neurologist...infact she said, "go let your chid live a normal childhood there is nothing wrong with her." :x :x
I am so SICK of doctors who REFUSE to acknowledge that just because they dont understand something doesnt mean it isnt an issue!!!!!!
Pressing on....:)
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Re: The Journey of a child

Postby nyt » Sun Sep 29, 2013 2:37 pm

So sorry that you hit this road block. Will continue to pray for the right doctor(s) to enter your life to help treat your daughter.
2/07 LAVH and TOT 7/07 TOT right side removed 9/07 IL, IH and GN neuropathy 11/07 PN - Dr. Howard
6/08 Obturator neuralgia - Dr. Conway 11/08 Disability, piriformis syndrome - Dr. Howard
4/09 Bilateral obturator decompression surgery, BLL RSD - Dr. Howard
9/10 Removed left side TOT, botox, re-evaluate obturator nerve - Dr. Hibner
2/11 LFCN and saphenous neuralgia - Dr. Dellon 2/11 MRI with Dr. Potter - confirmed entrapment
5/11 Right side TG - Dr. Hibner 2012 Left side TG - Dr. Hibner
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Re: The Journey of a child

Postby Violet M » Sun Sep 29, 2013 8:29 pm

Mom, I'm sorry you got such an unfeeling response from the neurologist but I guess I am not surprised. My neurologist said some pretty incredible things too. What will your next step be? -- or have you decided yet?

Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
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Re: The Journey of a child

Postby mom » Sun Nov 03, 2013 3:30 am

We are still pressing ahead. We are thinking of switching dr's
She has had a growth spurt recently which has caused symptoms to be at an all time high.
That convinces me more it muscular for her. She was up and down stairs recently ( we don't have stairs in our home) and she could not walk without dragging her legs for several days.
We find relief still with hot water soaks but that is
About the only thing that helps . Please never cease to pray for us if you believe that way, it is the only thing sustaining us!
Thinking of all you who are on this journey like we are. May you find
answers and peace

Mom
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Re: The Journey of a child

Postby Violet M » Sun Nov 03, 2013 3:33 am

Mom, I am so sorry your little girl is still struggling. :( I hope the change in doctors will bring some answers.

My prayers are with you.

Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
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Re: The Journey of a child

Postby mom » Sat Feb 01, 2014 5:11 am

NEURO APPT 1-28-2014

We had an appt earlier this week with amazing new neurologist . He is running some tests and I am hopeful that we are moving in the right direction .
I have stated for a long time that the " root" of her PN symptoms is muscular .
We have increased muscular issues in the last year which I will post about later .
Our thoughts and prayers are with all who are suffering especially those who are doing it in silence. I hope they find our site.
Thank you to all of you who have been believing with us for answers. We WILL find them.
:) mom
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