Dr. Hibner - 3 Day Ketamine Infusion and Me

[nyt]

Faith, your question to me is quite timely as I was going to update on my plans with Ketamine.

1) I joined three new forums to begin to have a better understanding of Complex Regional Pain Syndrome (CRPS/RSD) and Ketamine. Between the three sources I have been able to piece together a wealth of information. It is like a full-time job!

http://neurotalk.psychcentral.com/forum21.html
Ketamine Klub on Facebook
RSD/CRPS on Facebook

2) I went to NYC the middle of October to see a Dr. Hertz. He is a CRPS specialist that trained under the world renowned Dr. Schwartzmann in PA. I would have gone to Dr. Schwartzmann but the wait time to see him is 2 years! Dr. Hertz looked at my legs and examined them carefully. He told me I should really consider the Ketamine Coma as he felt that was my best option. I told him currently I am not looking for a treatment quite so aggressive and would prefer an outpatient medium dose infusion. He said he would do a 10 day outpatient Ketamine protocol where you go in for a 4 hour infusion of 50mg/hr of Ketamine. They would treat all symptoms such as nausea, hallucinations, headaches, etc with other drugs. I would then return every 4 weeks for 2-3 months for boosters then every 3 months. I would need a cardiac and psychiatric consult before the infusion. His office called me and scheduled me for Feb. 20, 2012 to start the infusion. I had already discussed with both Dr. Hibner and Dr. Howard about putting off the surgery on the left side until we got my legs under better control.

3) However, I received a message from Dr. Howard telling me a physician in Rochester, NY is doing Ketamine and made an appointment for me to see her. I saw her on Monday 11/14/2011 and she also looked at my legs and said we will get you scheduled ASAP for Ketamine. Her protocol is quite similar to Dr. Hertz. They will start with 100mg total to be infused over 2-4 hours and increase to 300 mg total over the 10 day period. Because the Ketamine that I as given when I saw Dr. Hibner in October did not totally relieve all my pelvic pain the second week they are going to do Lidocaine infusions together with the Ketamine. On Wednesday 11/16/2011 I got a call from the doctors office saying my insurance had approved the Ketamine infusions and I am scheduled to start December 12th!! Now that is fast and I feel like it is a God send! Boosters will be determined on how I am doing and she felt like I wouldn't need to and shouldn't cancel my surgery with Dr. Hibner.

4) After my infusions I will post how I am doing. I will also be in contact in Jan with Dr. Hibner about what to do after my left pudendal surgery with Ketamine. When I was there in October I discussed the possibility of delaying the surgery until the CRPS/RSD is under better control. Dr. Howard thought if the insurance would pay they should admit me a day or two before the surgery and start the Ketamine infusion. Dr. Howard is thinking along these lines because the CRPS/RSD has moved into my right butt cheek and incision. When I stand now my pudendal incision turns all bluish/purplish along with my legs. Also, just pressing slightly on my right butt cheek now it turns red and has become hyperreactive to touch.

5) All the doctors are quite optimistic and so I am that the Ketamine will help. I had such a good response to it in Phoenix that getting higher and longer dosing should help. Even now I still see some improvements. For example, my legs would swell when I would stand and they no longer swell. Also, my right butt muscles were very tight since the surgery and just would not loosen up no matter how much massage, PT, heat, ice, etc but since the Ketamine my right butt cheek and the pain is sooooo much better in that right butt. I remember being in the ICU and feeling my whole body take a deep relaxing breathe and touching my butt and thinking "Wow, those hard muscle knots have finally given up." I still have some trigger points in my piriformis but it has come along ways! I don't mind nor care that I might need Ketamine boosters the rest of my life if it helps give me more quality to my life and stops the muscle spasms in my legs that will put in a wheelchair at some point if they can't get them to stop.

[helenlegs 11]

Well done nyt, love your progressive attitude. I can read that wonderfully positive vibe in your post and you certainly seem to be on track for the best outcome possible.
Good stuff!
Helen

[donstore]

nyt, I am really excited for you. You are lucky to have Dr. Howard locally as your doctor. It sounds like you may very well be on the right track here with the big K. Larrry's story was pretty amazing. He couldn't have been in worse shape and he came back and was generous enough to share his story. We are out on the cutting edge here, that's for sure. Good luck and keep us posted.

All My Best,

Don

[LottaNerve]

Wow, nyt, count me in as another fascinated follower of your story! And thank you so much for posting it.
I am also going to be checking out those forums you mention. I have been reading everything I can about ketamine and how it works.
Your writing is very moving - I felt like I was right in that ICU with you while the ketamine was releasing your body, and then your most recent post about being able to resume your life again - to work, talk a walk in the park, belly dance, make love and rock your grand babies - well, those are my hopes and dreams too.
I look forward to more of your posts!

[LottaNerve]

How are you doing nyt? Are you having more ketamine infusions with Dr. Howard?
I am so so hopeful about this treatment for you!
Let us know how you are doing.

I must confess I have some self- interest here as well -- as I will be seeing Dr. Prager at UCLA this month and one of the treatments he uses is ketamine.

[nyt]

Ketamine treatments start on Dec. 12th. I'll post my experience and how I'm doing after the first of the year. I'm very excited about this. I'm not anticipating a cure but I did so well with it in Phoenix I am quite hopeful I should get pretty good relief for a while. It didn't last so I'm anticipating I'll need boosters.

[LottaNerve]

Ketamine treatments start on Dec. 12th. I'll post my experience and how I'm doing after the first of the year. I'm very excited about this.

I'm excited for you! I will be thinking about you as Dec. 12th approaches!

[nyt]

Just to clarify, Dr. Howard is NOT doing the Ketamine infusions. He referred me to a pain specialist named Dr. Thakur who does Ketamine infusions in Rochester. She is a sweet, very gentle, middle-aged Indian woman. I am very blessed that Dr. Howard works so closely with the pain clinic in Rochester so he knows everything they are doing. Overall I am feel very blessed with the healthcare providers that treat me as I have been able to find those who are willing to be partners with me on this journey.

[A's Mommy]

NYT

Having increased RSD symptoms lately.... esp. leg burning, noticing it in both limbs, left leg worse, discoloration especially after showers. Reduced pudendal pain but increased RSD sx.... just don't get it... only 5 wks out though.... doing everything i can... water walking, etc.

Looking for treatment locally --- I'm in Pittsburgh.... could you ask DR. Thacker or Dr. Hertz if they know anyone at UPMC (University of Pittsburgh Medical Cetner) doing low dose Ketamine infusions?

I have to kill this sucker before it kills me. I have too much life yet to live.

Much love and hugs to you,

A's M

[nyt]

A's Mommy, here are some physician names that I obtained from the Ketamine Klub on FB that do Ketamine treatments in PA. This is the most current list as patients keep the list updated. If you haven't yet received a diagnosis of CRPS/RSD from a physician these physicians should be able to and that way if any of them take insurance your insurance should pay for the treatment since Ketamine is the recommended treatment for CRPS. It is very common for CRPS symptoms to flare, get worse, or spread after surgery. Many patients with CRPS won't have surgery due to fear of CRPS spread. There are some anesthesia protocols that are recommended when one has surgery to help stop flares or spreading of the CRPS from surgery. I recommend you join the Ketamine Klub on FB as there is alot of useful information. I have recently seen a couple of PNE patients join. Keep up that water walking. Prayers sent your way.

Bryn Mawr
Matthew Kline Center for Pain 610-527-9500

Philly Area Dolestown, Jenkenstown PA and Marlton NJ:
Fox Chase Pain Management 215-576-1800

Hahnemann Philadelphia:
Dr. Robert J. Schwartzman 215-762-6915 At least 2 year waiting list to see him.