Ketamine treatment

[TCB]

helenlegs,

You are so right! There is nothing like having a doctor and staff who recognizes that you are in severe pain, treats you with dignity and respect, and goes after your pain like there is no tomorrow!

[kathyd]

Thanks TCB
for your helpful and encouraging post regarding ketamine. So happy that you are seeing improvement.
Like you I can't sit at all and have to travel in a minivan lying down ... this severity has been going on since about 2011 but worsened considerably after an unnecessary and misguided surgery with Dr Dellon in 2011.
My local pain mgmt docs have recommended me for ketamine ; thus my info was sent to one ketaimine doc in NYC ...by the name of Richman.. He refused to even see me saying that had he treated one PN patient without success.. and didn't want to try.again.
I then went to another doc in NYC i who is well recommended...He heard my history, looked at MRI pictures etc and said that he didn't consider my pain to be CRPS.,, and thus didn't think ketamine was for me.. My hubby and I asked why ..saying that this is centralized pain and neuropathic pain...etc etc... I even mentioned how I knew of other pn patients who had gotten relief from ketamine..
How do we get docs to see our symptoms as CRPS?? Its so frustrating..
He felt that pain pump trial would be better for me... which could be the case as I have bladder (IC issues) also..This is how all my pain originated..
Ketamine can potentially injure senstive bladders further so maybe this is for the best, in my case.
but I wonder why Docs won't see us as candidates when our CNS is so involved.
Your doc sounds wonderful...It is my prayer to find a team like that.

[TCB]

I try and return to the forum from time to time to keep everyone updated on IV Ketamine and Lidocaine treatment that I have been receiving for 4 years now. I have PNE and full body CRPS and I live in a world of hurt. I do however have a degree of quality life that I attribute to my regular Ketamine and Lidocaine infusions. The idea of IV Ketamine started with sever PNE and my visits with Dr. Hibner and Dr. Castellanos in 2011. Dr. Hibner felt I needed surgery but also said Ketamine infusions and or an On-Q Pain Buster Pump could help. Dr. Hibner did not have an outpatient infusion program so I looked around the country and found Drexel Neurology and a very special CRPS/ chronic pain program run by Dr. Robert Schwartzman and Dr. Enrique Aradillas. The only problem was it would take almost 4 years to see Dr. Schwartzman and Dr. Aradillas! While waiting my turn at Drexel I was considering spinal cord stimulator that required psych clearance by my very special Dallas pain psychologist. Dr. David Hanks cleared me for the SCS trial and suggested I see Dallas pain specialist John Claude Krusz MD. PhD to get immediate help for relentless pelvic back and leg pain. Dr. Krusz agreed to see me right away and I was delighted to have a chance to get my life back and get my pelvic burn knocked down a notch or two. Dr. Krusz saved my life by caring for me and getting me started on IV Ketamine and Lidocaine for the 3 years leading up to the time I got to see Dr. Aradillas at Drexel. Dr. Aradillas admitted me into the Drexel Program by putting me into the hospital in Philly for five days on IV Ketamine at 40mg an hour. The inpatient infusions went well because I had already been on IV and knew what to expect in the way of side effects. I improved more with the inpatient program and Dr. Aradillas put me back in several months later for a week of Lidocaine and steroid infusions followed by a second week IV Ketamine.This was truly a long haul but well worth it to get some relief from sever neuropathic pain we all know so well. I have continued to get my infusions and I tolerate them very well these days because my brain recognizes the meds just like any other. There are very few patients who have been on this medication as long as I have but I am here to tell you that it may not be every patients cup of tea but it sure enough works for me! I enjoy my family, my hobbies and my friends and they all understand that i am sick but still doing a good job life under under difficult circumstances. My IV's cost me about $50,000 dollars out of pocket because Dr. Krusz does not accept insurance. I am an attorney by trade so I fought with my insurance carrier Aetna for years and finally won on external review when a qualified doctor ( board certified in pain management) looked at my file and ruled my IV's were medically necessary. Recently I learned that the CEO at Aetna was diagnosed with CRPS and is suffering like us and the 50,000 new cases of CRPS diagnosed each year! I hope he helps change the position of big insurance when it comes to helping patients with sever neuropathic pain disorders like those who read this forum. I have to thank over and over the doctors named herein along with countless unnamed medical professionals who have helped me along the way. I plan to write a book some day to help patients in pain better understand how we navigate the pain highway despite numerous roadblocks along the way. Anyway it is getting late and sitting is not our favorite thing to do so good luck and God Bless all those who in this transitory life suffer pain sorrow or any other adversity! Stay positive and be well! TCB

[nyt]

TCB, thank you for sharing your story. Like you I also have CRPS and my ketamine experience started with Dr. Hibner. I was his first patient to go into the ICU to receive a very low dose for just 2 days before they were afraid of my insurance not paying for it. Since then I've received IV Ketamine and Lidocaine as an outpatient at the Rochester Pain Clinic, that was over 3 years ago. Dr. Aradillos is no longer at Drexel but has moved to the Vincera Institute in Philadelphia. This year I saw Dr. Aradillos and had back-to-back Lidocaine and Ketamine inpatient infusions. Before Ketamine and Lidocaine I could barely walk and prayed every day someone would cut my legs off because they hurt so bad. My pain is much better managed due to these infusions and rarely have days that my legs are intolerable. These infusions certainly aren't for everyone but they have given me some quality of life I didn't have before I started them. Again thanks for sharing your story.

[TCB]

NYT,

I can't thank you enough for helping me by introducing me to our mutual friend in NY. We are working together to support our cause and bring about awareness of CRPS
and the extreme treatments that are avialable for CRPS.I pray you are still responding to your IV therapy and please know that you are in my prayers as are all the folks who come to this site in search of answers to their pain concerns. If you can repost the below under the topic of CRPS and SFN I would be most thankful but if you can't i understsnd and I will return to the site and write it again under a different topic of SFN.
I want to post for the kind folks who visit this site that I have a new developement in my ongoing battle with CRPS of the pudendal nerve and many other nerves, and that is that I have been diagnosed with Small fiber Neuropathy "SFN". This diagnosis was made by Dr. Aradillas of Vincera Institute and confirmed by skin biopsies that I had done recently by my local dermatologist. This complicates things a bit, but opens up the door for some serious interventions that I would not likely be getting because big insurance does not believe us when we howl with pain and don't have anything objective to prove our suffering. If anyone has severe burning in the extremities or pelvis and thinks they might have SFN, they should ask their doctor to consider referring them to a neurologist who knows and treats patients with SFN and CRPS.I have been on IV ketamine and lidocaine since 2012 and I am doing quite well all things considered. The ketamine and lidocaine helps a lot with central sensitization. Plasma Pheresis is proving to be a treatment that helps with those of us with advance disease that has an autoimmune componenet. There may be a connection between CRPS and SFN which is an autoimune disease that has no cure just yet. I hope this helps someone some day and that is my purpose in writing and reporting on this site from time to time.
TCB

[Grammy]

I have been reading where ketamine can help reset your brain in the case of severe depression and anxiety. My pne of 24 years has made me mentally ill. I have mostly anxiety because I can not have a day where I do not feel vaginal discomfort. My symptoms cause a feeling of pressure and it is a sickening feeling. I feel like something foreign is going to fall out. I lost my husband of 53 years in August and without him I am devastated. I also suffer from severe fatigue from dealing with this day after day. My four failed surgeries were the biggest hurdle of my life. Currently thinking of a drg stim or pain pump.

I have tried so many treatments and shots I could not begin to count them. Pne has to be treated aggressively as soon as possible because I sincerely believe it causes brain damage over time.

Anyone who has had this treatment could you tell us if you feel better mentally after treatment. Because of the nature of pne I think it causes more mental anguish than some other types of chronic pain. Also if there is a combination of meds that help, please post. Cymbalta causes bladder restrictions that make my feelings worse. Actually Klonopin helps but drs don’t like that long term.

[Violet M]

Chronic pain changes your personality -- at least it did mine. It can cause physical changes in the brain and spinal cord. I agree with you that PN pain may cause additional mental anguish because of the nature of the pain.

Yes, I felt much better mentally after many of my symptoms resolved after treatment. So I think if you get the right treatments to help resolve your pain, that it is very likely you will heal mentally too.

Violet

[Shiloh48]

Hi all, I have been battling Pelvic Pain after a surgical injury in 2017 but in that short period of time it has devastated both I and my family's life. Besides becoming permantly disabled, it has taken away my two equally disabled children's caregiver from them ( Autism and Bipolar with suicidal Ideation) something which I cannot begin to fully express the devastation of.

There are many days when I want to give into the pain truthfully, even with the handful of medications I am on, but then I remember my children and my whom I adore, and I recommit myself even harder to my exercises and therapies- but it is getting harder every day. Recently I had second Botox procedure with Dr. Castellanos in July- the outcome however was disatisfactory, and my overall pain level is frequently an 8-10. Because of the poor outcome and the other procedures I had already tried with him ( trigger point injections, nerve blocks, Decompression surgery) he said there was not much more he could do for me. Frankly, I was heartily disgusted. Of my own volition, I asked my own pain doctor in a smaller city to refer me to an Internal Pelvic pain therapist. I am currently doing this now, but with my heightened pain state it is excruciating.

I know I do not have CRPS but could any form of Ketamine treatment be an option for me? I forgit to disclose that I also have BipolarII for which I have been in treatment since my early 20's ( I am almost 50). Please firgive this long treatise- I am desperate and will try anything.
Thank you.

[Violet M]

Ketamine helps some people but not everyone. Seems like it would be worth a try.

Sounds like Dr. Castellanos isn't recommending PNE surgery for you. Do you have any idea what happened during the initial surgery that might have triggered your symptoms?

Violet

[John Carter]

I went to set up to get the treatment... But the thing was you had to pay $2500 up front for the sessions.... sure it would do some good. but i only have $8500 to survive on each year;... so busted