Health Organization for Pudendal Education

nyt,
I am so happy to hear that ketamine has helped with your pain. It is a little coincidental that you mentioned something about your adductor muscles may be involved somehow, just as my doctors and I have suspected for me also. I think you mentioned something about yur Saphenous nerve or Posterior Femoral Cutaneous Nerve. Has any surgeon or doctor suggested the best surgical approach and surgeon for these nerves? I also just recently learned about RSD/CRPS and was not aware of it it until now. Ketamine, seems like a promising treatment for some with PN/PNE pain and glad to see some are getting relief from it. I agree that you want your pain level to be as low as possible prior to surgery and think you are doing the right thing. Good luck. Keep us updated. There's Always Hope!
Shawn

Shawnmellis, I have obturator nerve damage due to a transobturator bladder sling and this is the main cause of my adductor muscle spasms. Plus, add on to it a very unhappy pelvic floor that spasms around my obturator nerve just adds to my adductor muscle spasms. Unfortunately, the adductor spasms are starting to cause me knee problems and hip problems. Sometimes they spasm so bad that it is like a charlie horse and pull my knees out when it happens. Thank goodness the worst Charlie horse type spasms don't happen very often and for a chiro that puts my knees back into alignment. Dr. Dellon recommended saphenous nerve decompression surgery because I have a positive Tinel sign but Dr. Howard wasn't convinced my saphenous nerve problem is a true entrapment but due to my spasmed adductor muscles. Currently, Dr. Howard is trying some trigger points into my adductors but it has been very slow going because my legs are very hyperactive to the injections due to the CRPS/RSD and the trigger points into the adductors make me feel awful for several days. Dr. Hibner and I have talked about trying botox into the adductors but he has never injected adductor muscles before so for now we have not tried it. Dr. Dellon was suspicious that I have PFCN entrapment but because we spent most of my visit discussing all the problems on the ventral side that he felt it would be best to wait and discuss the dorsal side at a later visit. For now, I'm looking forward to trying the Ketamine with hopes it settles things down enough that physically and psychologically I can manage my left-sided pudendal decompression surgery with Dr. Hibner in Feb.

I can't believe that I have developed RSD/CRPS. I had symptoms of this all along after my Hibner surgery. Maybe even started before... can't remember. But it is definitely worse now after the recent surgery. What can I do to stop the flare up? I've been water walking 4 x a week. I am determined!!!

NYT --- I am at too much of a vulnerable place mentally to get involved with the Facebook Ketamine group. I just wanted to know a few things:

1) Do you have the scientific article about the benefits of Ketamine in CRPS/RSD? What about the 10-day outpatient protocol?

2) Will this make my healing nerve vulnerable to damage?

3) What about bladder side effects? I think Lotta Nerve mentioned that one to me.

thanks

fightpne@yahoo.com is my email

1) I'll email some of the research articles I have.

2) There is some published literature suggesting that Ketamine might have a protective effect for nerves during nerve surgery.

3) I have not seen nor heard on the forums that anyone has had problems with bladder retention when given Ketamine.

Regarding water walking. Aggressive physical exercise can make CRPS worse and continue any flare. It is important to continue to exercise ie water walking but never to the point of increased pain. It is extremely difficult to find that balance. I personally can't water walk because of the adductor nerve damage and only makes my legs 10x's worse. I do much better lap swimming with gentle kicking.

I should clarify my answer to #2 and then #3.

2) If Ketamine is given via an IV then the literature suggestions that it might have a protective effect against nerve damage during surgery but the literature is not clear cut on this topic. However, Ketamine should never be given via an intrathecal pain pump which gives pain medication directly to the spinal cord because doctors believe that will cause damage to the spinal cord due to the Ketamine. So far I haven't been able to find published literature on the latter so for now if I doctor suggests using Ketamine in an intrathecal pain pump do your homework before saying "yes."

3) I did a little bit of reading this morning and the literature I could find on Ketamine and bladder dysfunction were all related to individuals who use Ketamine as a street drug. That raises many questions regarding dosage and frequency of Ketamine use when abused as a street drug and possibility of contamination with other drugs. I'll post the question on the ketamine klub forum.

Hi A's Mommy, Have you been properly diagnosed with RSD yet? If so, how did they diagnose it and what type of Specialist diagnoses it?
Shawn

CRPS/RSD is usually diagnosed by a pain specialist or a neurologist. Diagnostic criteria are below.

CLINICAL DIAGNOSTIC CRITERIA FOR CRPS
1) Continuing pain, which is disproportionate to any inciting event
2) Must report at least one symptom in three of the four following categories:
Sensory: Reports of hyperesthesia and/or allodynia
Vasomotor: Reports of temperature asymmetry and/or skin color changes and/or skin color asymmetry
Sudomotor/Edema: Reports of edema and/or sweating changes and/or sweating asymmetry
Motor/Trophic: Reports of decreased range of motion and/or motor dysfunction (weakness, tremor, dystonia)
and/or trophic changes (hair, nail, skin)
3) Must display at least one sign* at time of evaluation in two or more of the following categories:
Sensory: Evidence of hyperalgesia (to pinprick) and/or allodynia (to light touch and/or deep somatic pressure
and/or joint movement)
Vasomotor: Evidence of temperature asymmetry and/or skin color changes and/or asymmetry
Sudomotor/Edema: Evidence of edema and/or sweating changes and/or sweating asymmetry
Motor/Trophic: Evidence of decreased range of motion and/or motor dysfunction (weakness, tremor, dystonia)
and/or trophic changes (hair, nail, skin)
4) There is no other diagnosis that better explains the signs and symptoms

This was taken from http://www.rsds.org/pdfsall/TXguideline ... oistic.pdf.

For more information on diagnostic criteria read the above publication.

shawnmellis wrote:Ketamine, seems like a promising treatment for some with PN/PNE pain

Please correct me if I'm wrong, but I don't think Ketamine is a treatment for PNE.

Hi Nyt,
I am so happy to read how the ketamine relieved your leg pain. When I read you cried in the shower out of joy for feeling somewhat normal again, I cried too! I am so happy for you and wish you continued success!

Although my story is elsewhere on this site I too would like to offer up my experiences with Ketamine. Between 2001-2003 I went back to France 4 times (after surgery in Nantes), checked myself into their awesome pain clinics, where they keep you 24/7, for a slow drip IV Ketamine infusion that lasted round the clock for 7 days. This therapy, which at the time was unavailable in the states was the only therapy that brought my post surgery 'suicidal pain' down to zero. I will also state that when the IV came out the pain returned and it was just as bad except for the 4th time - about 3-4 months later I began to feel better. It's been about 9 years now that I am 100% better - cured. I still find it hard to believe myself. As I've said elsewhere I have no proof that Ketamine ultimately cured my condition. It could of just been time or even maybe a miracle. But, I can not still put into words how much pain I was in post surgery - pain that never let up - ever - a constant 10 level. All I knew at the time is that the only therapy that really worked was a slow drip Ketamine infusion.