Back from another trip for four days of IV Ketamine and Lidocain for intractable PNE. I have been on IV pain meds for a year and a half now. Dr. John Claude Krusz has my pelvic pain under control and my quality of life is much improved by IV meds. I do have to have boosters every three months because my pain is centralized. This therapy is expensive. I am going to write my insurance a nice letter and ask them to help me. I try to write a little something now and then to hopefully give some other members or visitors some insight into this novel therapy for neuropathic pain and hopefully encourage them to stay in the fight and never give up hope. I hear that certain drug company's are working on some new channel blocking agents that could completely block neuropathic pain and give us the relief we have all been looking for for years. I pray that it happens soon, but in the meantime, I am happy to have Ketamine and Lidocain to keep my pelvic pain in check.
TCB
Ketamine & Lidocain IV for PNE
Re: Ketamine & Lidocain IV for PNE
My insurance company pays for my Ketamine and Lidocaine infusions but I have CRPS in addition to PN. I know there are individuals that have been successful in getting insurance companies to pay for Ketamine because Medicare covers Ketamine for CRPS. I would see what you can get your insurance to do.
I am so glad these two drug treatments help you. They help me too.
I am so glad these two drug treatments help you. They help me too.
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
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
Re: Ketamine & Lidocain IV for PNE
nyt,
Good to hear that you also are getting some relief with IV K&L. I will make the claim but have some hurdles to get over along the way.I have causalgia that started in my lumbar spine and legs 30 years ago following spine surgery then more recently (2007) moved into my pelvis following an injury caused by physical therapy. I opted not to go through a pudendal decompression and have been on IV K&L since June 2012. The IV works great for the more recent pelvic injury but not so well for the spine and legs. Dr. Krusz is out of network so I anticiapte it's going to be tough to get my insurance to help me. I can make a good argument that my IV therapy should be covered however I anticipate that they will deny the claims because my physician is out of network. I will argue that there are no in network doctors in my area that can help me and that it took me 4 and 1/2 years to find Dr. Krusz. It's a shame that we have to struggle to survive and battle our insurance carriers at the same time!
Good to hear that you also are getting some relief with IV K&L. I will make the claim but have some hurdles to get over along the way.I have causalgia that started in my lumbar spine and legs 30 years ago following spine surgery then more recently (2007) moved into my pelvis following an injury caused by physical therapy. I opted not to go through a pudendal decompression and have been on IV K&L since June 2012. The IV works great for the more recent pelvic injury but not so well for the spine and legs. Dr. Krusz is out of network so I anticiapte it's going to be tough to get my insurance to help me. I can make a good argument that my IV therapy should be covered however I anticipate that they will deny the claims because my physician is out of network. I will argue that there are no in network doctors in my area that can help me and that it took me 4 and 1/2 years to find Dr. Krusz. It's a shame that we have to struggle to survive and battle our insurance carriers at the same time!
-
- Posts: 164
- Joined: Fri Sep 24, 2010 8:56 am
- Location: Central California
- Contact:
Re: Ketamine & Lidocain IV for PNE
Ketamine is AWESOME! It is a shift in thinking to realize that many of us are suffering with not only pelvic pain, but centralized pain, or CRPS/RSD. I had this shift when a 3-day course of ketamine completely erased my pain for 3 days. Unfortunately, I have IC. Ketamine is a bad bladder irritant, so my bladder flared in response to it. However, the window of time that I had pain-free showed me that my brain and central nervous system were key players in my pain. In layman's terms, the ketamine takes your brain "offline" and reboots your nervous system. I wish I could reboot my brain on a regular basis. LOL
http://www.icandpne.wordpress.com
1995 First symptoms of PNE and IC
8/2010 Dr. Hibner, left TG- failed surgery.
3/2011 & 10/2011 - Dr. Dellon, left dorsal/perineal neurolysis -also failed.
1/2012 3-day ketamine infusions. Pain-free for several days! Bladder flared from IC.
11/2012 Intrathecal pain pump (bupivacaine, clonidine, morphine) Dr. Joshua Prager, UCLA.
2/13 My pain is reduced!
5/15 Living life again!
1995 First symptoms of PNE and IC
8/2010 Dr. Hibner, left TG- failed surgery.
3/2011 & 10/2011 - Dr. Dellon, left dorsal/perineal neurolysis -also failed.
1/2012 3-day ketamine infusions. Pain-free for several days! Bladder flared from IC.
11/2012 Intrathecal pain pump (bupivacaine, clonidine, morphine) Dr. Joshua Prager, UCLA.
2/13 My pain is reduced!
5/15 Living life again!
Re: Ketamine & Lidocain IV for PNE
Hi all this message is to TCP
Glad to hear you're feeling better with ketamine lidocaine IV!
Could you please tell me where Dr. Kurtz is located? Sorry spelling error im on my iPod at the moment
I am hoping to give ketamine a try if necessary and wondered if this doc is near my area
(Ny metro area)
Pretty desperate pain wise and willing to travel
Hopefully by car
Any info would be so appreciated good luck and thanks!! So much of
this involves luck and persistance and we just have to hit the right thing for each of us!
Glad to hear you're feeling better with ketamine lidocaine IV!
Could you please tell me where Dr. Kurtz is located? Sorry spelling error im on my iPod at the moment
I am hoping to give ketamine a try if necessary and wondered if this doc is near my area
(Ny metro area)
Pretty desperate pain wise and willing to travel
Hopefully by car
Any info would be so appreciated good luck and thanks!! So much of
this involves luck and persistance and we just have to hit the right thing for each of us!
Re: Ketamine & Lidocain IV for PNE
Hi Kathy,
I was just googling that doctor's name, and found this : http://www.anodyneheadachepain.com/
John claude Krusz Phd M.D.
His clinic is in Texas
I'm NOT sure if this is the same M.D. TCP was speaking of, but most likely?? Look under Research, then Research Posters.
There is a little blurb about neuropathic pain, but it's mostly for migraines.
Hope this is what you are looking for. Maybe TCP will say for sure.
Debbie
I was just googling that doctor's name, and found this : http://www.anodyneheadachepain.com/
John claude Krusz Phd M.D.
His clinic is in Texas
I'm NOT sure if this is the same M.D. TCP was speaking of, but most likely?? Look under Research, then Research Posters.
There is a little blurb about neuropathic pain, but it's mostly for migraines.
Hope this is what you are looking for. Maybe TCP will say for sure.
Debbie
Vag pain, leg burning 3/11, SIJ inj 7/11, Pelvic PT, Chiro/acupuncture,
2-CT pudendal blks 11/2012, did help, less deep vag pain
Potter MRI 04/2012 - Scar tissue/thickening at SS/ST, scar in Alcock canal -bilateral,
Hibner 6/12 suggests Botox (didnt do), 8/12 more pelvic PT w/ dry needling
Gabapentin 1800 mg, Lyrica 200 mg, 5mg valium, vicodin as needed
Trying to get rid of central sensitization burning pain in my legs, Valium seems to be helping
Looking into more mindfulness options. . . . .
2-CT pudendal blks 11/2012, did help, less deep vag pain
Potter MRI 04/2012 - Scar tissue/thickening at SS/ST, scar in Alcock canal -bilateral,
Hibner 6/12 suggests Botox (didnt do), 8/12 more pelvic PT w/ dry needling
Gabapentin 1800 mg, Lyrica 200 mg, 5mg valium, vicodin as needed
Trying to get rid of central sensitization burning pain in my legs, Valium seems to be helping
Looking into more mindfulness options. . . . .
Re: Ketamine & Lidocain IV for PNE
Hi Debbie
Thx so much for the info
In looking under REseach and then REsearch Poster do I first need to at be Dr Krusz's website?
Oh well I was hoping he was closer to my area.. but maybe TCB can verify.
From my research it seems that states out west like Texas and CA seem to be much more advanced in pain mgmt for PN and related pain than here ih the NYC area.
Thx again.
Kathy
Thx so much for the info
In looking under REseach and then REsearch Poster do I first need to at be Dr Krusz's website?
Oh well I was hoping he was closer to my area.. but maybe TCB can verify.
From my research it seems that states out west like Texas and CA seem to be much more advanced in pain mgmt for PN and related pain than here ih the NYC area.
Thx again.
Kathy
Re: Ketamine & Lidocain IV for PNE
Yes, Kathy go to the website first. Well Wisconsin isn't any better as far as good pain options - I'm with you there
Debbie
Debbie
Vag pain, leg burning 3/11, SIJ inj 7/11, Pelvic PT, Chiro/acupuncture,
2-CT pudendal blks 11/2012, did help, less deep vag pain
Potter MRI 04/2012 - Scar tissue/thickening at SS/ST, scar in Alcock canal -bilateral,
Hibner 6/12 suggests Botox (didnt do), 8/12 more pelvic PT w/ dry needling
Gabapentin 1800 mg, Lyrica 200 mg, 5mg valium, vicodin as needed
Trying to get rid of central sensitization burning pain in my legs, Valium seems to be helping
Looking into more mindfulness options. . . . .
2-CT pudendal blks 11/2012, did help, less deep vag pain
Potter MRI 04/2012 - Scar tissue/thickening at SS/ST, scar in Alcock canal -bilateral,
Hibner 6/12 suggests Botox (didnt do), 8/12 more pelvic PT w/ dry needling
Gabapentin 1800 mg, Lyrica 200 mg, 5mg valium, vicodin as needed
Trying to get rid of central sensitization burning pain in my legs, Valium seems to be helping
Looking into more mindfulness options. . . . .