Health Organization for Pudendal Education

Monday afternoon I was scheduled to have a clitoral nerve block, botox injection into the pelvic floor all under anesthesia with a 4 hour infusion of Ketamine. Then on Tuesday they were going to start an epidural with Marcaine for 5 days to try and get the CRPS/RSD in my legs to settle down. Well, when Dr. Hibner came in he said they had a brand new pain specialist, Dr. Sparlin, who he wanted to contact about doing a Ketamine infusion. Unfortunately, hospital policy at St. Joseph's hospital requires this has to be done in the ICU. I told Dr. Hibner I had no idea if my insurance would cover any of the Ketamine and ICU stay. He said he knew we could admit me at least over night with a Ketamine drip to the ICU for post-op pain management without problems from the insurance company.

I remember nothing of the of the exam for the botox injections due to Versed and very little of when Dr. Hibner came in to exam me in the recovery room to see how numb I was from the clitoral block. My Monday night in the ICU was spent in a very pleasant happy state with the world very out of focus and pleasant happy visions. One of the symptoms in my legs is they feel like they are on fire all the time. About 4:00 am on Tuesday morning I started to get real cold and the nurse gave me another blanket as she was concerned how cold my hands and feet had gotten. All the fire sensation in my legs slowly melted away over the next couple of hours and so far have not returned. They increased the dose of Ketamine about 6:00 am.

Dr. Hibner came in about 8:00ish and I told him my legs were feeling so much better and the only pain I had was in my left groin. My pain level was about 1. I was so happy. The pain specailist came in about 11:00 am and it was left that they were going to try and figure out what to do about the Ketamine infusion. Well, no one came back so the drip continued until Wednesday morning.

During Tuesday night and into the night on Wednesday it felt like my whole body just took a big relaxing breath and every muscle in my body started to relax. I had a generalized body itch over the last year that slowly resolved over the day and is still gone. I felt so much better on Tuesday I didn't think it was possible to feel better but Wednesday morning I felt like my old self with absolutely ZERO pain in my legs.

I was discharged at 9:00 pm on Wednseday night. I took a shower at the hotel that night and for the first time in 4 years I could stand with no pain in my legs. I was so happy I cried in the shower.

With standing I still get the rectal spasms, I still can't sit without the pudendal pain and groin pain, and I still have some of the SRPC/RSD sypmtoms in my legs such as the color changes but I finally feel like there might be an end in sight to the devasting pain I've had in my legs.

I have no idea what the insurance will cover but if I have to pay this off over the next 25 years with a payment plan so be it as for me it will be worth every cent just spent.

The plan is to put in a PIC line and do a 30 day home low dose infusion of Ketamine. The details are not worked out yet whether I can have this done in Buffalo, NY or whether Dr. Sparlin will put in the line here and my family dr. along with home health aids will monitor any problems with the insfusion. Dr. Sparlin could not promise me how long this decrease in pain will last but she is optimistic that we can make some headway in resetting my brain to remember what it is like to be normal.

nyt,
There is truly no feeling like having pain that you have lived with for years suddenly be gone. What wonderful news. I am so happy for you. Sounds like Dr. Hibner is innovating and searching for every way possible to succeed for all of us. Very encouraging development. Here's hoping the days ahead bring continued progress. This therapy sounds like a game changer. Big hugs and best wishes !

Don

NYT,

Thanks for the very interesting post on ketamine. It must be wonderful to have your devastating leg pain gone after so many years and I do hope this is just the beginning of better days ahead for you!

Best wishes,
Jeanie

Thanks for your post nyt! Dr. Hibner has spoken to me about Dr. Sparlin and due to my CRPS/central sensitization he recommends I due an intensive 2-3 day Ketamine infusion post TG surgery. I have to admit I am very nervous about the whole thing, but your experience does lessen my anxiety some. I am so happy the burning in your legs is so much better. I do hope it continues for you. It's so hard when you can't sit and can't stand either (I am in the same boat, though to a much lesser degree than you).

Do you think the LFCN and saphenous neuralgia are really just CRPS/RSD or an entrapement? I have leg/feet pain and worry that I have multiple nerve entrapement within the pelvis, but maybe it is just CRPS. The 30 day home Ketamine infusion sounds interesting. I do hope the insurance covers it. I too am worried about that if I decide to have the intensive post-op Ketamine.

Have you ever considered neuromodulation? I sometimes wonder if that would give me a better quality of life than surgery.

Sounds wonderful, nyt! I want some of that ketamine!

Seriously though, my pain doc just added 5% ketamine to my custom-mixed ointment of 5% lidocaine and 6% gabapentin which I apply to my perineum. I'll post if I see any reductions in my pain.

Good of Dr. Hibner to add that pain doctor to his team! It's going to be quite a state-of-the-art CPP facility by the time he's finished with it.

I'm very happy for you and hope that you can now see the light at the end of your chronic pain voyage. Thinking about you always.

Amazing nyt!!! your post, the treatment and how you have responded so well to it.
I am so pleased for you. I am also hopeful that this will help many more sufferers, Fantastic!

Wonderful news, NYT! I am so happy for you.

Faith, Dr. Sparlin, Dr. Peterman and Dr. Hibner are working on trying to change the hospital policy from having to be in the ICU when on a Ketamine drip to being on a regular floor on low dose infusions then hopefully insurance payment won't be a problem as it will be billed as pain management.

I had been very reluctant to try Ketamine. However, after much thought and some reading I began to feel like: 1) Ketamine was the best option to get the CRPS/RSD under control or into some type of remission that I had not tried and 2) it doesn't seem to be any worse than any other drug we have to take for pain management at low doses. I had to really exam my fear of trying Ketamine. I am so glad that I did and the length of stay in the ICU wasn't intentional just happened because Dr. Sparlin thought Dr. Hibner was going to move out of the ICU and Dr. Hibner thought Dr. Sparlin was going to do it. All I know, for me it worked out. I have no idea what my insurance is going to cover but I'll figure it out when the insurance starts paying or not paying.

As far as the saphenous and LFCN nerve entrapment that Dr. Dellon diagnosed me with. It is clear that the saphenous nerve is entrapped due to symptoms and positive Tinel sign. However, Dr. Howard is not convinced that it is a true entrapment of scar tissue and he thinks is might be just because my adductor muscles are so spasmed that is what is causing the entrapmenet. So, if we can get my adductor muscles to stop spasming then if it is not an entrapment due to scar tissue then those symptoms should subside. Dr. Howard has just started doing trigger point injections into the adductor muscles and so far I can't say I notice any difference but I am willing to give it time. I don't know what I think about the LFCN. The PSSD testing done in Dr. Dellon office shows I have no two point discreption in the distribution of the LFCN. However, I have never had pain in the distribution of that nerve. Dr. Howard isn't sure about the whole LFCN and at some point we might do nerve blocks to confirm Dr. Dellon's diagnosis. Personally, I think it is due to my CRPS/RSD but I have no proof of it other than my own opinion. Since I don't have complaints of pain in the specific distribution of the LFCN this is the least of my worries to investigate right now. For now it is my adductor muscles, pudendal pain, and left lower quadrant/groin pain, and getting this CRPS/RSD under better control.

Lernica, I use Lidocaine 5% ointment and Dr. Sparlin wants to get some made with Ketamine and Lidocaine. I need to find a compounding pharmacy to do this.

Since Dr. Sparlin is so new to St. Joseph's she has no protocol in place with the hospital to do the at home Ketamine infusions nor all the state regulations in place to do this. She is figuring it will take 2-3 months before everything will be in place for us to do this treatment. I would imagine once this is in place Dr. Hibner will be using this on more of his patients.

Some of the CRPS/RSD pain is starting to return in my legs but not yet to prior levels. I am so ever thankful for this short reprieve in my leg pain and know that there might be a treatment out there that can get this under control is nothing but short of a miracle for me. If during this journey that I will need some type of regular Ketamine treatments, then that is what I will do. I am no longer afraid of Ketamine and am glad that I have moved beyond that fear. I'm not anticipating that I will ever be totally pain free but I what I would love is to have my pain managed to the point I can return to work, take a walk in the park, belly dance again, make love to the hubby, and when those grand babies come be able to rock them to sleep. Those are my goals and I am still optimistic with time and more treatments they will happen.

The very best of luck NYT. Sometimes I think the acceptance of 'never being pain free' actually helps although admittedly that pain needs to be controllable and at a lower level to be able to 'work with'. All of your wishes for yourself are on my wish list for you too, you deserve them
Helen x

nyt,

I was just re-reading your Ketamine experience. Have you figured out a "next-step" yet for more ketamine infusions? Would love to hear an update if you want to share!