The Journey of a child

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pianogal
Posts: 437
Joined: Mon Sep 20, 2010 2:11 am
Location: Orange County, CA

Re: The Journey of a child

Post by pianogal »

if however pt could temporarily provide relief of spastic muscles, even if it wasn't the underlying problem, but rather the result, perhaps pt could lower overall percentage of pinch from muscles slightly or on pt days and that could slow the overall damage to the nerve while pursuing a cure elsewhere through other methods that are not pt...
-straddle fall age 4-7 w/bleeding labia, tampons hurt in teens, papsmere started annoying pelvic 'tingling' & pne in 02
-obturator surgery w/ Filler in 05 (useless, created sciatic & plantar fascitis pain)
-TIR surgery w/ Bautrant in 08 and vestibulectomy in 08 in France (vest. removed pain w/intercourse, pain w/sitting increased post surgery)
-chronic fatigue & food allergies/migraines (gluten, milk) from pain meds in 08
-want a life back. I'm 34 w/8+ years of pain
HerMajesty
Posts: 1134
Joined: Sat Sep 18, 2010 12:41 am
Location: North Las Vegas, Nevada

Re: The Journey of a child

Post by HerMajesty »

pianogal wrote:if however pt could temporarily provide relief of spastic muscles, even if it wasn't the underlying problem, but rather the result, perhaps pt could lower overall percentage of pinch from muscles slightly or on pt days and that could slow the overall damage to the nerve while pursuing a cure elsewhere through other methods that are not pt...
I worked on this theory and was glad I did, but my insurance pays for 60 PT visits a year with $10 copay! My response had a lot to do with financial reality.
pelvic pain started 1985 age 14 interstitial cystitis. Refused medical care from age 17, did GREAT with self care for years.
2004 PN started gradually, disabled by 2009. Underlying cause SIJD & Tarlov cysts
improved with PT & meds: neurontin, valium, nortriptyline, propanolol. (off nortriptyline & propanolol now, yay!)
Tarlov cyst surgery with Dr. Frank Feigenbaum March 20, 2012.
Results have been excellent so far; but I won't know my final functional level for a couple of years.
nyt
Posts: 1165
Joined: Sun Oct 31, 2010 3:24 am

Re: The Journey of a child

Post by nyt »

From one mother to another, go with your gut! If your gut says don't go back to this PT then don't second guess it, don't go back. Your gut is always right, always listen to it.
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
HerMajesty
Posts: 1134
Joined: Sat Sep 18, 2010 12:41 am
Location: North Las Vegas, Nevada

Re: The Journey of a child

Post by HerMajesty »

nyt wrote:From one mother to another, go with your gut! If your gut says don't go back to this PT then don't second guess it, don't go back. Your gut is always right, always listen to it.
OK it's unscientific but who cares, as a mama who knows many mamas I totally agree.
pelvic pain started 1985 age 14 interstitial cystitis. Refused medical care from age 17, did GREAT with self care for years.
2004 PN started gradually, disabled by 2009. Underlying cause SIJD & Tarlov cysts
improved with PT & meds: neurontin, valium, nortriptyline, propanolol. (off nortriptyline & propanolol now, yay!)
Tarlov cyst surgery with Dr. Frank Feigenbaum March 20, 2012.
Results have been excellent so far; but I won't know my final functional level for a couple of years.
pianogal
Posts: 437
Joined: Mon Sep 20, 2010 2:11 am
Location: Orange County, CA

Re: The Journey of a child

Post by pianogal »

yes, go with your mama gut. :)
-straddle fall age 4-7 w/bleeding labia, tampons hurt in teens, papsmere started annoying pelvic 'tingling' & pne in 02
-obturator surgery w/ Filler in 05 (useless, created sciatic & plantar fascitis pain)
-TIR surgery w/ Bautrant in 08 and vestibulectomy in 08 in France (vest. removed pain w/intercourse, pain w/sitting increased post surgery)
-chronic fatigue & food allergies/migraines (gluten, milk) from pain meds in 08
-want a life back. I'm 34 w/8+ years of pain
mom
Posts: 181
Joined: Sat Dec 04, 2010 3:15 pm

Re: The Journey of a child

Post by mom »

Thanks ladies.

Today has been especially bad for the itch. She has been itching like crazy and crying becuase she hates her itch. Interestingly it is supposed to rain tomorrow...???
I think i mentioned somethign about feeling like humidity or heat ( or something weather related) cused her more intensity in itch.
So if this is really happening ( based on the weather) that would be along the lines of a nerve thing right?? I mean people w/ arthritis ache more due to certain weather conditions b/c of "scar tissue" right.
This has been my gut feeling from the beginning. I have told countless people that I think it something to do with a nerve.
I am just thinking out loud here.
pianogal
Posts: 437
Joined: Mon Sep 20, 2010 2:11 am
Location: Orange County, CA

Re: The Journey of a child

Post by pianogal »

I don't know, but I am praying harder for you and for her!!!
-straddle fall age 4-7 w/bleeding labia, tampons hurt in teens, papsmere started annoying pelvic 'tingling' & pne in 02
-obturator surgery w/ Filler in 05 (useless, created sciatic & plantar fascitis pain)
-TIR surgery w/ Bautrant in 08 and vestibulectomy in 08 in France (vest. removed pain w/intercourse, pain w/sitting increased post surgery)
-chronic fatigue & food allergies/migraines (gluten, milk) from pain meds in 08
-want a life back. I'm 34 w/8+ years of pain
mom
Posts: 181
Joined: Sat Dec 04, 2010 3:15 pm

Re: The Journey of a child

Post by mom »

Bad day today.
Rained all day, itch was very bad.
She complained of a headache yesterday and most of today. Not sure what that is about.
She says she doesn't understand why this has to happen to her. I wish I could trade places with her.
GOD GIVE IT TO ME!!!!! Make her well!
Today was another mentally taxing day.
Last edited by mom on Sun Feb 06, 2011 3:38 pm, edited 1 time in total.
HerMajesty
Posts: 1134
Joined: Sat Sep 18, 2010 12:41 am
Location: North Las Vegas, Nevada

Re: The Journey of a child

Post by HerMajesty »

Headache: The kinetic compensation for a twisted pelvis is usually in the upper neck. I had headaches starting as a teen from the same time as my pelvic pain syndrome.

To explain kinetic compensation, you know her pelvis is tilted or twisted somewhat to the side, yes? But of course her brain is going to reflexively prevent her from reacting to this by walking in a diagonal line. So she twists elsewhere to straighten herself out. On exam, that "elsewhere" is usually the 1st couple of vertebrae under the skull.

This is important to remember if you see a Chiropractor: Do not allow adjustment of her neck. It can be adjusted for the rest of her life and will never straighten out permanently as it is the compensation not the problem. But the one time I saw a Chiro as a young woman, he fixated on my neck, never noticed the pelvis, and did neck adjustments until he gave me back pain. There are risks associated with neck adjustments and NO benefit under these circumstances.
pelvic pain started 1985 age 14 interstitial cystitis. Refused medical care from age 17, did GREAT with self care for years.
2004 PN started gradually, disabled by 2009. Underlying cause SIJD & Tarlov cysts
improved with PT & meds: neurontin, valium, nortriptyline, propanolol. (off nortriptyline & propanolol now, yay!)
Tarlov cyst surgery with Dr. Frank Feigenbaum March 20, 2012.
Results have been excellent so far; but I won't know my final functional level for a couple of years.
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A's Mommy
Posts: 447
Joined: Fri Sep 17, 2010 12:46 pm
Location: Pennsylvania
Contact:

Re: The Journey of a child

Post by A's Mommy »

Mom,

How agonizing for you. If my dear Athena was in pain I would trade places w/ her in a second. I am praying so hard for you and your daughter. Poor angel. Jesus have mercy on her.

As Mommy
Daughter grew completely on left side of pelvis
Multiple uterine surgeries to fix uterine adhesions, septum, and endo
Had all the conservative workups done, 3Tesla (Potter), recovering from L sided TG (Hibner) 11/10, Botox 6/11 failed, bilateral anterior PNE decompression (distal Alcock's/perineal branch), Aszmann, Vienna, 10/11; dx'd with CRPS Type 2, 12/11, Ketamine @ CCF 2/12, doing 75% better PRAISE JESUS!
http://fighting-pne.blogspot.com
http://www.thepelvicmessenger.org
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