Best Pain Clinics in USA

Discuss different Pain Management Options; Medication options including side effects and Worldwide variances in names etc.
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A's Mommy
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Joined: Fri Sep 17, 2010 12:46 pm
Location: Pennsylvania
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Best Pain Clinics in USA

Post by A's Mommy »

Friends,

I am really struggling with the fact that of all the "pain specialists" I've seen, none seem to know anything about chronic pain, let alone chronic neuropathic pain.

I am asking for your help. Does anyone have any idea what the best pain clinics are in the USA? I'm ready to fly there.

And if anyone prescribes me a Vicodin, I will literally crush it with my bare hands in front of their face.

It's NEUROPATHIC pain. Help Help Help.

Thank you,

A's 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
Lernica
Posts: 960
Joined: Fri Jan 14, 2011 10:31 pm

Re: Best Pain Clinics in USA

Post by Lernica »

I wouldn't go near any "pain clinic" unless it were associated with a major teaching hospital. If it is, you will be in good hands. They are the experts in chronic pain management.

As an added bonus, seek a pain clinic with a neurologist on staff (not on standby, or visiting when needed). My pain clinic is headed up by a neurologist, Dr. Allan Gordon. He is one of Canada's foremost experts on chronic neurological pain.

Good luck in your search, AM. I am sorry that it is taking you so long to find a good doctor.

Warm regards,

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
HerMajesty
Posts: 1134
Joined: Sat Sep 18, 2010 12:41 am
Location: North Las Vegas, Nevada

Re: Best Pain Clinics in USA

Post by HerMajesty »

I would be shocked if you had to fly anywhere. My pain clinic guy is a PA in my local area who I met through my PT, because PT's in Nevada can't dry needle and he does trigger point injections. He can't possibly be the only well read, empathetic pain clinic practitioner between here and Pennsylvania.
In my experience in meeting several pain clinic PA's, they have actually all been more attentive and interested in problem solving for their patients than are the Doctors they are associated with, maybe that is something to consider?
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.
Lernica
Posts: 960
Joined: Fri Jan 14, 2011 10:31 pm

Re: Best Pain Clinics in USA

Post by Lernica »

Please excuse my ignorance, HM, but what's a "PA"?
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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A's Mommy
Posts: 447
Joined: Fri Sep 17, 2010 12:46 pm
Location: Pennsylvania
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Re: Best Pain Clinics in USA

Post by A's Mommy »

Lernica,

Thank you for the encouragement; however, I did go to a pain clinic at a major teaching hospital and was sorely disappointed many times. I guess there just aren't any good ones near me. I didn't know if there was some "world renowned" pain clinic in the US or something. I think I will next try a Google search.

Sincerely,

A's 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
HerMajesty
Posts: 1134
Joined: Sat Sep 18, 2010 12:41 am
Location: North Las Vegas, Nevada

Re: Best Pain Clinics in USA

Post by HerMajesty »

Lernica wrote:Please excuse my ignorance, HM, but what's a "PA"?
A Physicians Assistant. They are mostly people from other fields who go back to school later in life and do an intensive 2 or 3 years program kind of like a Master's program. After that they can function in many ways as a Physician, but are limited in the procedures they can do ( definitely no surgery!) and in that they must work under Physician supervision (Doc countersigns their orders, reviews their charts, etc).

JMO, a Doctor is often a smart kid in high school and undergraduate school, who gets into Med school and then does a Residency; result = 30 year old individual working 1st real job in their life, has been raised entirely in a certain medical culture, and thinks the world owes them something. I know this is a generality but it's my theory as to why I meet so many more respectful, helpful PA's.
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.
Faith
Posts: 697
Joined: Fri Oct 15, 2010 5:15 pm

Re: Best Pain Clinics in USA

Post by Faith »

I like my pain doctor. He listens to me and seems to know what PN is (although not super educated). He did my PN blocks. But he seems to be an interventional pain doctor-he just wants to find the source of the pain and try to fix it. Not prescribe meds. I feel like I need someone to manage my meds better. Like I tried Cymbalta 30mg while on 2400mg Neurontin and it was too much Central Nervous System depression for me.I want a doctor to help me get better control of my pain while I wait to see Dr. Hibner. A urogynocologist who specializes in pelvic pain doesn't really know enough to do pain management for me. It seems like every pain doctor I read about online within a 2 hour radius of me also does intervtional pain management. Any suggestions?
-11/08 vulvodynia began around conception of first & only pregnancy
-3/10 sacral/sitting pain began after SIJD manipulation
-Progressive widespread pain- central sensitization
-PT, meds, injections, botox, ESWT = debilitated.
-5/12 Potter MRI - scarring of left ST, coccygeous & posterior alcock
-12/12 - left FAI/labral hip tear surgery
2014-2019 managed w/ gabapentin, massage, and lifestyle mod
2020 - big flare up
www.thepurposeofpain.blogspot.com
Lernica
Posts: 960
Joined: Fri Jan 14, 2011 10:31 pm

Re: Best Pain Clinics in USA

Post by Lernica »

Faith wrote: I want a doctor to help me get better control of my pain while I wait to see Dr. Hibner. A urogynocologist who specializes in pelvic pain doesn't really know enough to do pain management for me. It seems like every pain doctor I read about online within a 2 hour radius of me also does interventional pain management. Any suggestions?
I would phone them to confirm the online info. It could be that the primary doctor does not actually do the "interventions" but instead brings an anaesthetist in to do them. In which case I would assume that the primary doctor does the prescription management. This is how it works at my pain clinic. The primary doctor does the prescriptions and the overall pain management plan, and his anaesthetist does the interventionist stuff.

Good luck in your search, Faith.

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
RJR
Posts: 157
Joined: Mon Nov 15, 2010 11:26 pm
Location: Northern VA

Re: Best Pain Clinics in USA

Post by RJR »

Dear AM,
Roger all that other forum members say.

My reco is Dr James Campbell at Johns Hopkins. He is a full professor of neurosurgery and had done a modified TG PN decompression procedure back in the day. He retired from neurosurgery couple of years ago, and is currently director of the Johns Hopkins Pain Clinic. His interest is peripheral neuropathy and pain mgmt. He always has a resident in tow, and is very oriented to teaching. Nice guy.

Dr Campbell was my surgical second opinion ~ 1 year ago...and I followed up with him last week re: Lyrica and pain management going forward during recovery. Having recently gotten/read the second opinion report (reflecting his assessment from a year ago), I was struck by his strong reco for surgery for me, that it was the only way for me to get better (versus drugs and PT and injections). It was 3 pages in length, reflecting our 1.5 hr meeting.

So I would consider him to be a top doc and he is not too far from you.
Best to you,
brother RR
Cyclist till perineal pain onset R side (Apr'08). Dx with PN (Aug'09). Lyrica gave 30% pain reduction. Potter MRI (Oct'10) validated at surgery with Dr Hibner (Nov'10) - found nerve attached to scarred STL. Now sitting 10 hrs/day vs 1 hr/day pre-op. Surgery video = http://www.youtube.com/watch?v=6FDwana6SQU

Deep neuropathic burning pain flares have been gone since surgery...Grateful to Dr Hibner.
Ymei5
Posts: 1
Joined: Sun May 27, 2012 6:15 pm

Re: Best Pain Clinics in USA

Post by Ymei5 »

Thank you for this helpful info.for this best pain Clinics. I guess there just aren't any good ones near me. actually if you search such kinds of best paid or free medical clinics online, you may find them which you really needed!
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