newbie with pain flare

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Charlie
Posts: 214
Joined: Fri Sep 17, 2010 11:48 pm

Re: newbie with pain flare

Post by Charlie »

melissasev wrote:Thanks so much Charlie. I gets so frustrating and confusing. She did say that she was trying to break up some of the connective tissue then we would be doing internal work within the next couple of visits. Hermajesty-What type of treatment does your PT do on you. My pain flare is so much better this evening. My next appt is Thurs so I will see how I am feeling on Wed before I make any decisions. I have tried nerve blocks in the past. I had a total of about 5 of them. The first 3 helped alot, then the pain came back, and the last 2 put me in a flare. I have had a MRi with Dr Potter and there is definitely something muscular going on. This condition is just a roller coaster..Some treatments work for some, then others get into a major flare.
I think you are taking the right approach. Go to PT in a positive frame of mind and give it a chance. If it works - great , if it does not do not despair as there is other stuff you can try.

Regarding the 3T scan everyone I know who has been to Potter has said it was really helpful and recommended it . However again there is no real evidence that this is a reliable diagnostic tool. I am not saying it is a waste of time getting one but I would be weary of basing all treatment decisions on it. Lets say Potter really has found a way of diagnosing exactly where an entrapment is every time or ruling one out. Should n't she be getting nominated for the Nobel prize soon? Maybe it is a piece of incredible technology , I know the 3T MRI is being used for lots of other conditions. If you went by the Nantes criteria for surgery you would actually be considered a good candidate for surgery as your first nerve blocks helped for a short time. I am not saying they are right but it is something to consider. Please don't construe that as a recommendation for surgery, I am just presenting a different argument.
Last edited by Charlie on Mon Mar 21, 2011 3:07 am, edited 3 times in total.
Tried numerous medications as well as a long period of myofascial physical therapy combined with meditation/relaxation. My pelvic floor muscles are now normal and relaxed on exam ( confirmed by many Pelvic floor PTs) yet my pain remains the same. Also have intense leg pain. Deciding on next treatment.
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HerMajesty
Posts: 1134
Joined: Sat Sep 18, 2010 12:41 am
Location: North Las Vegas, Nevada

Re: newbie with pain flare

Post by HerMajesty »

Your welcome, you sound like a good candidate!
As to what kind of PT I get, I had my pelvic joints corrected and have had no more PT work at all (proper pelvic joint correction is an event, not a process).
We have had patients who have had no prior benefit from myofascial PT, who got benefit from myofascial work AFTER the joints were corrected: Then the muscles can be worked into relaxation without a constant exacerbating factor working against the process.
But frankly having done 6 months of myofascial / excercise PT prior to the joint correction, I had no patience to return to it afterwards. The myofascial / excercise PT was a lot of work for a little temporary benefit, and the joint work was easy and resulted in immediate and permanent benefit. I was ready to get out of PT and on with my life.
At the moment I am focusing on issues found in my MRN: Possible entrapment of the nerve in the piriformis (awaiting injections), and S2 tarlov cysts (awaiting a consult to see if I am a candidate for surgery). The PT chapter of my treatment is closed :)
Remember YOU pm ME...I really want to help but my brain is on pills, am doing the whirlwind trip to Somerville, getting back Monday night and just found out my son might be having sinus surgery Tuesday morning...so a reminder would be really helpful! I have a PT in mind but wish to confirm my impression in person.
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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melissasev
Posts: 9
Joined: Wed Nov 03, 2010 12:36 am

Re: newbie with pain flare

Post by melissasev »

Thanks Charlie-Thanks so much for your imput, I appreciate it. The nerves blocks helped the first couple of times, then I got rear-ended 3 times in a matter of 3 months, and went back then that's when the blocks put me in a flare. I think my pelvis is all messed up. With this condition we have to have an open mind. I'm so glad I found this site, and thank you everyone for your support. Hermajesty- I will PM you after your seminar for that name. I'm excited to hear who you would recommend. I know my hips and body are all out of whack....Thanks again!!
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catherine a
Posts: 291
Joined: Sat Sep 18, 2010 4:46 am
Location: Perth Western Australia

Re: newbie with pain flare

Post by catherine a »

At the PN Australian conference recently I was told by Dr. Bautrant that the obturator muscle/ nerve would cause pain in the inner thigh region. Investigation of the OI nerve might be a good place to start.

Catherine
2004 PNE following vag. hysterectomy and A & P repair. 2007 TIR surgery France. severe entrapment at Alcocks canal & SS ligaments . Have my life back. 90% cured.No longer have medical appts.or physio.Some pain remains but is tolerable. 2012 Flew from Australia to the UK without pain flare. Very manageable. Almost back to normal. Now hold support group meetings at KEMH Subiaco Perth WA. Every 2nd Sat. of the month. Still pace my activities. PN doesn't dominate any more.
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melissasev
Posts: 9
Joined: Wed Nov 03, 2010 12:36 am

Re: newbie with pain flare

Post by melissasev »

so should i stop the pt and just concentrate on my massages that helped me?? i'm so afraid that if i continue the flare may get worse..ugh!!
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Lernica
Posts: 960
Joined: Fri Jan 14, 2011 10:31 pm

Re: newbie with pain flare

Post by Lernica »

Melissa,

You say that your PN problem is strictly muscular in nature. I think my PN pain is the same. I have a lifelong history of endometriosis, which I think put my pelvic muscles into spasm and put pressure on the nerve. Have you seen a gyno for endometriosis?

Lernica
Athlete until pain started in 2001. Diagnosed with PN in Nov. 2010. Probable cause: 3 difficult labors, 5 pelvic surgeries for endometriosis, and undiagnosed hip injuries. 60% better after 3 rounds of shockwave therapy in Cornwall, Ontario (Dec - Feb/12). 99% better after bilateral hip scopes for FAI and labral tears (April and July/12). Pelvic pain life coach Lorraine Faendrich helped me overcome the mind/body connection to chronic pain: http://www.radiantlifedesign.com
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melissasev
Posts: 9
Joined: Wed Nov 03, 2010 12:36 am

Re: newbie with pain flare

Post by melissasev »

Hi Lernica

I have seen a gyno for endo, but everything was fine..I'm just so afraid to continue the pT, if it is making my flare worse..UGH!! how are you doing??
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