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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 19 of 19. This is the beginning of the thread.
Posted by kerria on February 3, 2006, at 19:30:40
Has anyone had surgery to help severe pain from PN? Thank you for sharing any info.
tc,
kerria
Posted by Larry Hoover on February 5, 2006, at 0:01:42
In reply to surgery for severe pudendal neuralgia?, posted by kerria on February 3, 2006, at 19:30:40
> Has anyone had surgery to help severe pain from PN? Thank you for sharing any info.
> tc,
> kerriaOn the off-chance that our respective neuropathies have some common elements, I offer you the idea that perhaps cannabis might offer some real help, without resorting to surgery.
I'm not advocating smoking the stuff. I'm talking oral intake. My preferred route is via milk chocolate made with cannabis butter. And the cannabis is not Cannabis sativa, but instead, Cannabis indica. The latter is not genetically distinct from the former (they cross breed readily), but the active ingredient profile is more effective against pain if the plant has strong indica traits. There is also an alcoholic extract (a tincture) with similar properties. A couple of mist sprays into the mouth, and you're good to go.
Unfortunately, I don't think that these products are obtainable in the U.S., without some serious commitment to avoiding legal sanction. It is a sad circumstance, that needy people are denied treatments with high efficacy, due to some antiquated legislation arising from the unfortunate period of time known as Prohibition. Unfortunately, the rich alcohol lobbyists won the day.
All you do by restricting access to a desired commodity is to drive up the price. Considering the difference between the market price for e.g. dried parsley and that for dried cannabis buds, current legislation has served to pump astounding profits into the hands of some shady characters, while simultaneously criminalizing behaviour, and people doing something with little risk to anyone other than the user.
One square of cannabis infused chocolate, twice a day. That's all I needed, to turn things around.
Lar
Posted by zenhussy on February 5, 2006, at 10:49:03
In reply to Re: surgery for severe pudendal neuralgia? » kerria, posted by Larry Hoover on February 5, 2006, at 0:01:42
quick note......medicinal cannabis isn't for everyone and especially in the case of dissociation extreme caution needs to be used when assessing if applicable.
we're all for medicinal cannabis but not as a adjunct for all disease or disorder complaints.
we wish there was something for kerria's pain non-narcotic.....however due to previous issues she has raised on this site we just can't back cannabis in this case based on what she has written about her situation.
tc both of ya kerria and Lar.
Posted by kerria on February 6, 2006, at 23:39:14
In reply to Re: surgery for severe pudendal neuralgia? » kerria, posted by Larry Hoover on February 5, 2006, at 0:01:42
Thank you, Larry, for your thoughts. Having anything to do with something illegal is impossible for me now for many reasons.
My problem is severe and i don't have many options to treat the severity of pain i'm constantly in when the neuralgia is active. It also makes my psych problem worse so i'm desperate to have a solution.It can't be illegal because i have to take pain meds. If i ever use or misuse and break the law that will be taken away probably and the pain is too severe to live with. Also i work part time in a municipal government service job that i love.
i had a pudendal nerve block last week and now have relief from most of the pain which proves that i'd be a good candidate for having a successful surgery. i wish i knew someone that had that surgery. It would make me feel better because the surgery isn't common.
It's been a very difficult time- i wish i had a doctor who helped advise me about everything. i'm always so alone, making decisions when i don't know what i'm doing.
i'm having severe pain that needs to be stopped. i don't have a choice but to try to find a dr to do the surgery. The dr treating me with pain meds will not treat me with this medicine for too much longer and i don't think it's safe, either.i don't think that cannabis would help enough to allow me to function and it would probably make it harder and more confusing to live with my parts. It's already a mess to have blackouts and fbs and live with parts of my mind so separated.
i'm so afraid of the pain coming back, so afraid of the solutions also. There's never a way out of all the dilemmas. Ever. There's never anyone who understands either. i wonder if this nightmare will ever be over- and all the rest of them also.
thanks for helping as you could.i know that you mean the best. i hope that the cannabis continues to work for you and doesn't give you any problems.
Tc,
kerria
Posted by kerria on February 6, 2006, at 23:45:45
In reply to Re: surgery for severe pudendal neuralgia? » Larry Hoover, posted by zenhussy on February 5, 2006, at 10:49:03
Thank you, ZH. i hope things get easier.
It's so hard to post anywhere. i feel so misunderstood.
take care,
kerria
Posted by ed_uk on February 7, 2006, at 16:32:59
In reply to Re: surgery for severe pudendal neuralgia?, posted by kerria on February 6, 2006, at 23:45:45
Hi K
I'm very pleased to hear that the nerve block was successful :) Please keep us up to date with your progress.
Ed
Posted by kerria on February 12, 2006, at 1:45:27
In reply to Re: surgery for severe pudendal neuralgia? » kerria, posted by ed_uk on February 7, 2006, at 16:32:59
The pain gradually came back, a little more every day now. Now i'm waiting for the dr who does the surgery to review my med. records and give me an appt to talk about having the surgery.
It's so hard to have so many things done:(
i hope that the pain is over soon.Thank you for asking about me:)
love,
kerria
Posted by ed_uk on February 12, 2006, at 16:58:51
In reply to Re: surgery for severe pudendal neuralgia?, posted by kerria on February 12, 2006, at 1:45:27
So it looks like surgery will be an option?
Ed x
Posted by Ilene on February 23, 2006, at 20:46:50
In reply to surgery for severe pudendal neuralgia?, posted by kerria on February 3, 2006, at 19:30:40
I thought this page was pretty interesting, but you may have already found it:
http://www.pudendal.info/info/doctors/DrAntolak.htmIn fact, doing a search on google:
"pudendal neuralgia" surgery
pulls up a lot of interesting sites.Good luck,
I.
Posted by kerria on March 2, 2006, at 18:27:03
In reply to Re: surgery for severe pudendal neuralgia? » kerria, posted by Ilene on February 23, 2006, at 20:46:50
Thank you, Ilene for the link. i've been there a few times.
Hey, guess what- i met the surgeon in my area that does the surgery and he thinks it could help me. i'm so soooo thankful that there might be a chance that i could be out of pain naturally. well, not exactly naturally, just drug free and without pain.
No more waking up in the morning with terrible pain- i hope. i'll probably be having the surgery in about two months. i hope so so much it works. i feel so thankful that this Dr will take me. i hope that the surgery will help.It's not totally outpatient- i have to stay in the hospital a few days. It will be so worth it if it is successful.
kerria
Posted by kerria on March 4, 2006, at 18:35:28
In reply to Re: surgery for severe pudendal neuralgia?, posted by kerria on March 2, 2006, at 18:27:03
The surgery is very rare- as is PNE. Maybe i will go to the forums about PN and find someone there who has had the surgery- especially before the date comes up.
About getting off oxycodone- i was reading about the psychological benefits of taking it over at the babble board. i hope that i won't get worse with my head problems if i get off that or that i can stay on at a lower dose.
It would be so good to be out of pain though and not HAVE to take it. i'm in pain so much of the day anyways- it's too hard to keep on top of it and i can never do things like sit, take trips - that are more than an hour without a lot of pain. i have a cushion that helps but i don't always take it along - it's so embarassing i can't.
Also i haven't been able to have s. since the pain started. i've had to give up a lot. So has h.Lately it feels almost an emergency to get out of pain- we've been having fbs and a couple of days ago i woke up screaming because of a nightmare about a. The pain had become so bad as it always does towards morning.
Like waking up to a nightmare and finding out it's real. The scary part isn't real anymore thank God but the pain part of the nightmare is real.Take care everyone,
kerria
Posted by Larry Hoover on March 4, 2006, at 19:06:21
In reply to Re: surgery for severe pudendal neuralgia?, posted by kerria on March 4, 2006, at 18:35:28
I wish you the best of outcomes with your upcoming surgery. I know all too well what it is like to have your first conscious thoughts, every day, to be of pain.
Take care, and please keep us informed about how things go.
Lar
Posted by mike99 on March 26, 2006, at 19:15:19
In reply to Re: surgery for severe pudendal neuralgia? » kerria, posted by Larry Hoover on March 4, 2006, at 19:06:21
I'm wondering if I may have pudendal neuralgia. I've always called it pelvic pain, but i'm now thinking it could be pudendal neuralgia.
I know one of the symptoms is that it usually occurs while sitting.Might this feel like the sharp, shooting and awful sensation a man has after being struck in the testes?
Posted by kerria on March 29, 2006, at 20:53:01
In reply to pudendal neuralgia in men--possible trigger**, posted by mike99 on March 26, 2006, at 19:15:19
Yes. In Europe it's called sometimes "The cyclist's syndrome. Persons who have spent alot of time riding bikes get it sometimesespecially mountain biking. Also things like horseback riding can lead to PN.
Usually a dr will send you for a pudendal nerve block and make a positive diagnosis through your response. How free you are of pain when the nerve block takes affect can measure how succesful a surgery will be.
There is a site and a forum if you look it up on the web.i'm sorry that you're in pain. It's really hard to endure everyday. i was afraid of surgery and now i'm hopeful that it will help.
Medicine only goes so far in releiving it. In the morning when the medicine is worn off it's horrific. In fact, i was tired after work and went to sleep afterwards but had to set an alarm to make sure i wasn't late on medicine. If i managed to sleep beyond it's impossibly hard to manage to get up and get medicine, it hurts so badly.
If you live in or near France- the most experienced drs to correct (hopefully, the surgery is not totally sucessful with everyone) are there- many travel to have surgery there also, There's a place in Texas - i'm thinking of having it there and have a phone interview soon.
i hope you're able to find help,
kerria
Posted by mike99 on March 30, 2006, at 15:04:15
In reply to Re: pudendal neuralgia in men--possible trigger**, posted by kerria on March 29, 2006, at 20:53:01
thank you kerria.
still not sure if it's PN...went to see a specialist about it just the other day and he said it may be a "sports hernia", but still don't know. Running is my main culprit---no pain while running, but while I'm sitting the day *after* running it hits.
i so hope you can find relief. may i ask if you're consulting with a neurosurgeon or another type of doc (orthopaedic surgeon...)?
best wishes to you whatever route you take.
mike
Posted by mike99 on March 30, 2006, at 15:07:07
In reply to Re: pudendal neuralgia in men--possible trigger**, posted by kerria on March 29, 2006, at 20:53:01
...hate it when i forget to click the "add name of previous poster" feature.
Posted by kerria on March 31, 2006, at 0:54:33
In reply to Re: pudendal neuralgia in men--possible trigger**, posted by mike99 on March 30, 2006, at 15:04:15
Hi Mike,
Sitting is the most painful thing for me also. i try to never sit at all. my dr gave directions to make a pad to us but find it's better to not sit or sit on my feet- kneel/sit so the painful part doesn't hit the chair.
i'm a hiker and don't have any worse pain when i hike long hikes. My pain is all the time though-since the injury on the backpacking trip.
Because your pain is worse when sitting you should try to find a dr who at least knows about a diagnosis of PN. i went to so many drs- every kind of workup was done- because the pain was so bad my dr kept sending me for one dr to another. i even had major gyn surgery- it didn't help the pain at all. i hae scars and feel so bad i had unnecessary surgery.
There is a dr in MD and drs in Houston that do the surgery as well as the first team of drs in France. They're neurosurgeons and sports medicine specialists.
i hope the surgery works.
You should check it out maybe.
Don't sit- it makes it worse.Take care,
kerria
Posted by mike99 on April 1, 2006, at 13:16:49
In reply to Re: pudendal neuralgia in men--possible trigger** » mike99, posted by kerria on March 31, 2006, at 0:54:33
> Hi Mike,
Hiya back =)
> i'm a hiker and don't have any worse pain when i hike long hikes. My pain is all the time though-since the injury on the backpacking trip.
Was this an initial injury that caused the PN?
The only injury I can think of is when I landed really hard on a jetski---though this was many years ago and my symptoms only began about one year ago. If I don't run I don't have any problems. But when I do...> There is a dr in MD and drs in Houston that do the surgery as well as the first team of drs in France. They're neurosurgeons and sports medicine specialists.
Yeah, my doc does sports med. Think I'm gonna see a neurosurgeon also, cuz I have a back issue as well, so hopefully he could also distinguish whether I have PN or sports hernia.
> i hope the surgery works.Me too. May I ask if you're going ahead with the surgery?
> Take care,> kerria
Ditto...Mike
Posted by kerria on April 1, 2006, at 15:22:19
In reply to Re: pudendal neuralgia in men--possible trigger**, posted by mike99 on April 1, 2006, at 13:16:49
Hi Mike,
Yes, i'll have the surgery - i'm just not sure where yet. The pain is constant- i don't have any good days. It's too hard to manage.
Yes, the fall on the backpack trip while carrying the heavy pack is what caused it. i was saying that at first but after MRIs were taken my dr sent me to a gyn dr who wanted to do surgery.
i feel so badly i had unnecessary surgery.Make sure that they have facts before getting exploritory surgery on you- trying to find what the cause is.
i'm convinced that PN is the problem and the more experienced surgeon will probably be the best.
Thanx- i hope that it works, too.
Some drs don't believe in PN at all. My pain management dr was like that- i looked it up myself and found that i had all the symptoms- i looked up the nerve that governed the place where i felt pain. It was the pudendal nerve. i asked that dr about PNE and he said "Nobody ever has that."
So you have to find a dr who believes in PN as being a true diagnosis. i went to the Mayo clinic in MN. They don't believe it there either. They tested me so thousands of $ worth of stuff and at the end told me that they didn't know why i had pain. Not only that- then they accused me of it being psychosomatic and then seeking pain medicine. it was terrible.
For your own sake make sure that your dr is PN aware anyways and believes it could be a real diagnosis.
take care- i hope you can be pain free-
kerria
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