Health Organization for Pudendal Education

Hi to all,
and thx to NYT, Larry, Lotta Nerve and everyone who posted on Ketamine. I recently read Lotta Nerves success story. I was so happy for her and also inspired that maybe there is something out there that can finally help me too, as I have had that "end of my rope" feeling for a long time.
I am looking into ketamine and pain pumps and possibly traveling to see the Dr Prager if necessary and if he would take me on..
Like others my pain condition has taken on a life of its own. I have been basically housebound since 2010, and at level 10 pain since an unsuccessful nerve surgery in 2011..
It has taken a huge toll on my marriage as my husband has had to take over all the "mommy' things" I can't do (we have 3 kids) esp the driving part, and husband is exhausted.
I know many here can relate to this..

A pain doc in NYC briefly tried ketamine in his office with me in Oct 2011. The first time he attached an IV drip with ketamine and lidocaine. I laid on a narrow uncomfortable table and had the same experience that Lotta Nerve described (like a psychodelic acid trip) All of my senses felt different and magnified..At one point the drip was too high and I felt like was spinning out of control like Dorothy's house in the Wizard of Oz! I screamed for help and the doc turned it down. My husband sat at my bedside the whole time with his usual comment of "Relax" ,basically what he says to everything! Sadly it is hard for him to conceive of the levels of pain we are in.
I felt no pain during the the treatment but when I woke up 4 hours later, the pain returned and I felt nausea, which passed within a few hours..
The doc scheduled a 2nd treatment two weeks later this time he left out the lidocaine saying he thought it caued the nausea..He also used less ketamine. I was under again for several hours but this time I felt mild pain (not as much as usual) and I had a similar weird experience as the first time.I was less "out of it" due to less of the drug.
When I woke up again, the pain returned..
After each of these treatments I had no continued pain relief... so the pain doc said this medicine wouldn't work for me.. thats it.
However, I researched Ketamine quite a bit and learned that a few hours in the doc 's office is not the common way ketamine is administered, so maybe this wasn't a proper trial.
Usually it seems to be done over several days in a row as we have read from NYT and others accounts and preferably in hospital setting
It did not, to my knowledge bother my bladder, which has IC issues also.
Just wanted to get opinions ..was this a proper trial of the drug? I would like to try it again in a different environment.
I am also thinking of proceeding right to the pain pump.. This same doc does pain pumps....He is good kind doc and well known in and expereinced in NY and aware of pelvic pain ... but it doesn't soundl like he is at the level of DR Prager. I was impressed by the comment that was determined to "get the pain" and he did for
'"lotta nerve"
I am in desperate pain and am currently coming down off methadone which over 6 mos helped very little. I use didlaudid supps which used to help a bit but I had to keep increasing to the highest dose 12mg and that does very little (but better than nothing)
There more to tell but just wanted to get folks opinion. I need to do something for this pain. I suspect I have centralized pain like many of us tho Im not senstive to touch or temperature.. instead, severe thobbing in the peri-anal area (near the surgical site) every waking minute.
Any comment advice on the above would be so appreciated
Thx so much to all,

Kathy

Any doctor who has experience with Ketamine always gives Versed and something for nausea. Some doctors also give clonidine. Versed helps to decrease the hallucinations and Ketamine usually makes most people nauseaus. If Ketamine is something you want to try again I would find someone who specializes in it. The range of doses that people need to find relieve really varies. For example, I've had both inpatient and outpatient protocols for Ketamine. The outpatient protocol doesn't last mean but a few days because I just can't get high enough doses of Ketamine but the inpatient Ketamine where I can get 3 times the amount of Ketamine compared to outpatient works quite well for me and lasts me about 3 weeks before it starts wearing off. However, Ketamine doesn't help everyone. There is a group on Facebook called "Ketamine Klub for CRPS/RSD Patients" that has alot of information about Ketamine and a list of doctors who administer Ketamine.

A pain pump is certainly a good option too. Just depends on what route you want to go. If the doctor you see now can put in a pain pump it would certainly save you from travel.

Thanks NYT for all your tips.. I
Tho we don't know if Ketamine would work, its clear that the way it was done by this doc was not optimal. Its tough to find an expert unless you hear through word of mouth who is the best doc. For instance my pain doc who had been treating pain for probably over 30 years ,presents himself as an expert and told me stories about other ketamine patients but as I remember none of them had pelvic pain.
What about Dr Hertz in NY? I have a call in to him now and will try again.I remember your mentioning him in another post. I believe he does more long term doses of ketamine I I have to see, but think its out- patient. Hope his wait is not long.
Also you had mentioned a doc you saw in Rochester (which is probably 3-4 hrs from me) If she is better than Dr Hertz than I love to try her. At this point whether its ketamine. pain pumps, or whatever, I feel like my life is their hands, so I want to make sure the doc is truly the best and very experienced. even tho I have no clue if I could handle a long flight i'd be willing to try for the best doc.
If something didn't work for someone, you have to wonder if maybe it wasn't the pain intervention, but the doc's lack of skill or experience. (Tho no one is perfect)

I will also try the ketamine club,, tho with my level of pain, and the emotional toll, sometimes its tough to go on these facebook groups, as people post some scary upsetting stuffthat its best not to see
I heard that one doc, mentioned there Schwartzman?? I think, has a 2 yr wait..
Hopefully Hertz is good?
Thx again NYT..Wishing you the best.

Hi
One more quick question re: ketamine infustions..
Must a person have the burning/ itching component of PNE pain in order to be helped by ketamine infusions? Its seems that many or most PN patients have that burning type of pain. One patient referred to it as the "hallmark of PNE". Is the burning what indicates central sensitization? Or is it just one of the symptoms etc.?
My pain is not burning, instead a constant throbbing like an incredible migraine or toothache in the anal rectal and peri area and vicinity ...also urinary complaints.

I have a consult set up with Dr Hertz.. he wouldn't talk to me first on the phone, and just want to make sure that burning pain isn't a pre-requisite for ketamine treatment.
My husband has schlepped me on soo many long trips to NYC or other places and wasted a fortune on so many things that I just want to check in advance if I can.
Of course after all this time I know there aren't guarantees, you do just have to take a chance and try.
Thanks in advance for any info!

I saw Dr. Hertz and he is a really nice and knowledgeable physician. He does a 10 day outpatient program and then you go back for regular boosters. You have to have a cardiac and psychiatric consult before he will do the Ketamine infusion. I do not know if he will do Ketamine for pelvic pain or if it is just for his CRPS patients. I was all set up to do infusions with him when Dr. Howard referred me to Dr. Thakur in Rochester. Rochester is much closer for me so I've been going there for just over 1 year. Dr. Thakur is also a very nice and knowledgeable physician. Dr. Howard refers some of his pelvic pain patients to the practice that Dr. Thakur is in so they are quite familiar with pelvic pain, at least compared to many average pain specialist and I think that is just because of the referrals they get from Dr. Howard. Dr. Thakur also does a 10 day outpatient Ketamine program and she also does Lidocaine infusions. She does NOT require a cardiac or psychiatric consultation prior to Ketamine infusions. However, if you have post traumatic stress syndrome they will probably not do the Ketamine infusion but that is also the case with Dr. Hertz. The nurses are absolutely outstanding that administer the infusions and I can't say enough good things about them. Depending on how well the Ketamine works on your pain determines whether they will do boosters.

Hi NYT
Thanks so much for the quick reply and info regarding Dr Hertz and Dr Thakur.
The problem I had in NYC with another ketamine doc--(Richman) is that they hear pelvic pain as a term and refuse to treat it saying they just treat CRPS
or RSD. , not pudendal etc.
But I think in my case and others, the pain has become part of the CNS, a centralized thing and as Lotta Nerves' Doctor Prager said, is really a form of CRPS...(based on my symptoms)..so I will use that term in discussing my pain. I am scheduled for next week.
Also at pain doc at NY's Hosp for Spec surgery referred me to Dr Hertz telling me that I have neuropathic pain..in his opinion.

Since Dr Fred Howard sends Pelvic pain patient to Dr Thakur would it be smarter to just go directly to her, since we know she treats pelvic typpe pain? Just want to make sure I don;t get bumped by Dr Hertz after having hubby take off from work to schlepp me yet again to an appmt>

Thanks so much for all the detail on these docs...both sound good!
Kathy

I can't advice you on what to do only give you my personal experience. I do not know how much Dr. Hertz's knows about pelvic pain beyond what any general pain specialist knows. Even though we briefly discussed my pelvic pain the focus was on the CRPS I have in my legs. If you join the Ketamine Klub forumon Facebook you could ask on there to see if anyone has seen him for pelvic pain and got Ketamine. I know that there have been a few pelvic pain patients that have had Ketamine infusions with Dr. Thakur but I do not know if they have CRPS in their legs also and that is the reason they got the Ketamine. They also do Lidocaine infusions. I have been very impressed with the pain group in Rochester and I can't even tell you how many general pain specialists I saw over a 5 year period before I went there.

Karyn wrote:

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.

It is a treatment that may help reduce PNE pain. I have had the ketamine infusion in the ICU at St. Joes with Dr. Hibner for 4 days straight and only got relief for 1 day after the procedure. It may work differently with others but people should be aware insurance usually will not cover this & it has a low sucsess rate.

Hi NYT and all,
With regards to Ketamine it sounds like the usual rule applies ... the fact that we are all different in our pain and with what's going on in our nervous systems/brain etc.
So we can't know how we will respond until we try it.
I think the chances of it working are higher if we pick a doc who has treated patients with symptoms similar to ours with success, and done it with the correct protocol in place.
Thats why Im doing my homework on this and other treatments.

Thanks NYT ...I feel that like "Lotta Nerve" I have a chronic regional pain syndrome. that is instead.. in the pudendal (peri-anal)and bladder areas). My docs feel it has become hard wired so that "the pain" is the disease..

Dr Hertz 's office did not say to bring anything but just to come,but I think y docs office should let me know the above before we head there so he does not turn me away etc...
Your group in Rochester sounds wonderful too.
Thx for all the details.
Like manyI I've had a few negative experiences with pain clinics that are simply block factories and I thinks its so important to find a doc who cares and is determined to help the patient until the pain is finally turned down.. I think that makes all the difference; sometimes a procedure that didn't work shouldn't be crossed off your list ..maybe it the was the doctor who did it and not the procedure.
I pray that all who need it can find the right source of help!

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