This might sound strange to some, since it seems the first step is self care and lifestyle changes. Some background, I'm 26 and have had PN pain for close to 2 years. I self diagnosed myself after 5 other specialists (including a colorectal surgeon who wanted to "stick a camera in your belly button and poke around abit")... Finally about 2 months ago I visited Dr. Antolak in MN. He's the first Dr to recognize my problems, and we did a guided nerve block on (i think) both sides. I had temporary relief from the numbing, but after about 48hrs I was back to square one. I try to use a pad or towel etc to lift my sitting area, and it does help when sitting at a desk etc for extended periods....
Here's the kicker and the point of my question....What if the other choices (totally avoiding sitting, lifting, bending etc) aren't an option. I build and race cars for a living. It has taken the culmination of my life's work to get to this point, and I won't give it up for anything. In effect, I am a professional athlete...I must perform under all circumstance, within time constraints, and have little margin for error. I can't not bend, and when tuning a car, I must sit in a racing seat for unspecified amounts of time...and the sit pad is not allowed. If i were to cave to the "self care", it would mean giving up everything, to essentially completely limit an otherwise healthy body...in effect to ease strain on one set of peripheral nerves. I can't believe that the best method of treating a condition is by catering to the symptoms...which is essentially the wrong way to treat or cure a "mechanical" condition. Since its not mental (yes I understand certain percentages of nerve pain and side effect, anxiety etc, are mental), there should be a "mechanical" fix. Again, the surgery seems to "hack up" for lack of a better descriptor, everything around the nerve....for possible relief, yet still the same limitations as pre-surgery.
My only relief comes from opiates, which is obviously not a cure. I do find that marijuana eases the "strain" and allows sleep and the "oomph" to power through on the bad days (i live in a safe access region). That being said....I'm young and don't want to fight this, and the dr's and insurance companies forever. I refuse to believe that this is "terminal", despite the lack of success stories I see.
Can you get a pain pump or SCS without surgery? OR (and I KNOW this is going to raise eyebrows) could I have the nerve removed or cut, if I would be willing to live with the possible side effects on bowel control. It might sound radical, but in my line of work those conditions would be easier to live with than my current pain.
Sorry for the huge post, and call it a rant...but I'm very serious. I've already come back from an even worse place with this condition (mentally), and I never want to go back.
Thanks guys...I know many of you physically feel the way I do.
What if lifestyle changes aren't really an option?
Re: What if lifestyle changes aren't really an option?
This is a tough situation you are in and I'm sorry you've had to join our club here.
As far as cutting the nerve -- not really an option because you can still have phantom pain/symptoms and you would most likely be incontinent.
You might want to read Kris's story http://pudendalhope.org/node/70 and consider re-engineering your seat to something that's more comfortable.
Best,
Violet
You can get a pain pump or SCS without PN surgery although they are considered surgeries also and have their own sets of problems. There are mixed reviews on how well they work. It might make more sense to at least try nerve release surgery to give your nerve a chance to heal, otherwise you may continue to do more damage to the nerve and you will just be masking the pain. Over time the SCS and pain pump may become less effective.brewcity wrote: Can you get a pain pump or SCS without surgery? OR (and I KNOW this is going to raise eyebrows) could I have the nerve removed or cut, if I would be willing to live with the possible side effects on bowel control. It might sound radical, but in my line of work those conditions would be easier to live with than my current pain.
As far as cutting the nerve -- not really an option because you can still have phantom pain/symptoms and you would most likely be incontinent.
You might want to read Kris's story http://pudendalhope.org/node/70 and consider re-engineering your seat to something that's more comfortable.
Best,
Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
Re: What if lifestyle changes aren't really an option?
Just a thought - have you tried any of the meds for neuropathic pain? - ie pregabalin/Lyrica, amitriptyline, nortriptyline, tramadol, gabapentin/Neurontin?
I do hope that you find a solution that works for you.
I do hope that you find a solution that works for you.
Re: What if lifestyle changes aren't really an option?
I was given gabapentin before my diagnosis (another doctor took a stab in the dark) but it did nothing besides give me a bit of a head *buzz*. I react extremely poorly to anti-depressant medications, ever since I was given Strattera (ssri). I nod out, and they have caused the *bad* thoughts you try to avoid with those kind of drugs. This wasn't ever put on my medical record, so when I first started having pain (and moreover the stress and anxiety that comes with it) I was given Lexapro, then that was switched for Cymbalta. The cymbalta "seemed" to help for a short time, but quickly faded away making me think it was just placebo effect. The problem with it is it still has some of the bad side effects I mention, and now the addition of lack of libido and fatigue. Pretty much meant I was still in pain, and a depressed, wet towel of a person. My mood and ability to cope have actually been more stable without them. Because of this, I am beyond scared to use amitryptaline, and let a drug like that back into my body.
I do use Baclofen but don't notice it doing much, but it doesn't have side effects so I keep taking it.
From my life experience, my body tends not to react almost at all to a low dose of anything, then reacts negatively when the big dose is given. Because it effects my work, I'm trying to find a physically fix, or a pain fix that doesn't require tranquilizing medications. I'm intrigued with the EWST treatment mention in another thread, because it seems like as an "athlete" I may be able to not completely abandon my lifestyle permanently.
I do use Baclofen but don't notice it doing much, but it doesn't have side effects so I keep taking it.
From my life experience, my body tends not to react almost at all to a low dose of anything, then reacts negatively when the big dose is given. Because it effects my work, I'm trying to find a physically fix, or a pain fix that doesn't require tranquilizing medications. I'm intrigued with the EWST treatment mention in another thread, because it seems like as an "athlete" I may be able to not completely abandon my lifestyle permanently.
Re: What if lifestyle changes aren't really an option?
Hi Brewcity
In answer to your initial questions Yes you can have an SCS prior to pudendal surgery. I have had an SCS for nearly 5 years now.....it is definitely a help however I still do not sit for very long as that position aggravates my symptoms so much that I have to avoid it even with many cushions and ice.
The one thing to remember if you consider an SCS is that to take part in extreme sports etc will be contraindicated. The whole success of this therapy is to restrict movements that can cause tension on the spine which i expect in a racing field would be difficult.
Apart from the physical restrictions if you do have an entrapment of your pudendal nerve, sitting and continuing to do so if not going to help it...so therefore an SCS is not going to solve that problem. It can only mask the situation.
In answer to your initial questions Yes you can have an SCS prior to pudendal surgery. I have had an SCS for nearly 5 years now.....it is definitely a help however I still do not sit for very long as that position aggravates my symptoms so much that I have to avoid it even with many cushions and ice.
The one thing to remember if you consider an SCS is that to take part in extreme sports etc will be contraindicated. The whole success of this therapy is to restrict movements that can cause tension on the spine which i expect in a racing field would be difficult.
Apart from the physical restrictions if you do have an entrapment of your pudendal nerve, sitting and continuing to do so if not going to help it...so therefore an SCS is not going to solve that problem. It can only mask the situation.
PNE started 2003 following Vaginal Hysterectomy, pelvic floor repair and right oophorectomy; eventually after many tests had BilateralTG surgery Nantes 2004; following this tried many other treatments including 7 day epidural, ketamin infusions to no avail; Trialed and was implanted with a Neurostimulator in 2007- Dr Van Buyten Belgium, this has enabled me to manage my pain much better.
Re: What if lifestyle changes aren't really an option?
Thanks, I think I understand. What I fundamentally don't seem to understand, is what I really need to do. I understand that not sitting helps relieve pain, but what can I do to actually attempt to fix the issue? That I guess is what I'm having trouble grasping. I've had an injection, and I have another in a week, but those are supposedly diagnostic not treatment...I don't seem to understand the treatment? Is it eventually supposed to just heal? Dr Antolak, and the other information I have doesn't seem to say what you really need to do to attempt to fix the problem. I know its not "that simple", but if something caused it, and we can identify the nerve by injections (felt great for a little while), then WHAT needs to happen to fix it....
Re: What if lifestyle changes aren't really an option?
To fix the issue - depends on exactly what is wrong, and what caused it in the first place. And on many other factors as well - it is not straightforward.
I have heard from my consultant that he considers about 70% of people with PN get long term help from nerve blocks - we haven't seen that with many members on here. Yes, they are diagnostic, but the hope is that the steroid content of the block will also act long term to improve things. They are usually given as a course - I expect it would be a good idea to see the course of blocks through, and then give it some time, and then think about what to do next.
Other than that, you could consider PT, I know that some people have found it helpful. And I do think you should consider some pain relief, it can really improve quality of life. Long term pain can really drag one down, and it isn't a good idea to leave it running unchecked because the pain pathways can get 'stuck'....
You've mentioned gabapentin - I found the side effects of gabapentin to be too much to take. Many people find that they tend to subside with time (not me) - I don't know what dose you were taking? - most people need at least 1800mg a day, some need to take the dose much higher. If you were not getting any pain relief at all, it is likely that the dose wasn't high enough. Unless you were up to 3600mg a day, that is....
Here in the UK, the first line treatment for neuropathic pain of the sort that we all have here, is amitriptyline or nortriptyline, or pregabalin/Lyrica. These do all have some side effects when you first start to take them but most of these go with continued use, the thing that may continue is a bit of a dry mouth with amitrip/nortrip. Amitrip/nortrip are TCAs (old fashioned tri cyclic antidepressants) but for this purpose are taken at a small fraction of the dose for depression. They have been around for many years and are very well understood. Nortriptyline is better with regard to side effects than amitriptyline, but costs a little more, so amitriptyline is usually suggested first. They will make you a bit sleepy after taking them, so we are told to take them at bedtime. Pregabalin is not an anti-depressant at all, it is an anti convulsant, this is the one that worked for me. It is not cheap so many doctors look to try the TCAs first.
(Strattera is not an SSRI by the way, it is an NRI -not to be confused with SNRI. Clinical trials did not show any anti-depressant properties.)
Apologies if you already know all this.
I have heard from my consultant that he considers about 70% of people with PN get long term help from nerve blocks - we haven't seen that with many members on here. Yes, they are diagnostic, but the hope is that the steroid content of the block will also act long term to improve things. They are usually given as a course - I expect it would be a good idea to see the course of blocks through, and then give it some time, and then think about what to do next.
Other than that, you could consider PT, I know that some people have found it helpful. And I do think you should consider some pain relief, it can really improve quality of life. Long term pain can really drag one down, and it isn't a good idea to leave it running unchecked because the pain pathways can get 'stuck'....
You've mentioned gabapentin - I found the side effects of gabapentin to be too much to take. Many people find that they tend to subside with time (not me) - I don't know what dose you were taking? - most people need at least 1800mg a day, some need to take the dose much higher. If you were not getting any pain relief at all, it is likely that the dose wasn't high enough. Unless you were up to 3600mg a day, that is....
Here in the UK, the first line treatment for neuropathic pain of the sort that we all have here, is amitriptyline or nortriptyline, or pregabalin/Lyrica. These do all have some side effects when you first start to take them but most of these go with continued use, the thing that may continue is a bit of a dry mouth with amitrip/nortrip. Amitrip/nortrip are TCAs (old fashioned tri cyclic antidepressants) but for this purpose are taken at a small fraction of the dose for depression. They have been around for many years and are very well understood. Nortriptyline is better with regard to side effects than amitriptyline, but costs a little more, so amitriptyline is usually suggested first. They will make you a bit sleepy after taking them, so we are told to take them at bedtime. Pregabalin is not an anti-depressant at all, it is an anti convulsant, this is the one that worked for me. It is not cheap so many doctors look to try the TCAs first.
(Strattera is not an SSRI by the way, it is an NRI -not to be confused with SNRI. Clinical trials did not show any anti-depressant properties.)
Apologies if you already know all this.
Re: What if lifestyle changes aren't really an option?
I knew some but not all of that. I guess I'll see the blocks through, ive been dealing with it for a while and its really starting to take my life apart. I feel like as time goes on its getting a bit worse, and I'm already not working. I know this really isn't considered a "Terminal" problem, but its really taken my life away from me. I've started the amitryp this week. IS this something that can "cure" or "heal" completely? I know thats a complicated question, but I feel like I don't see many success stories. I know "happy" people don't post their problems (the success story area is limited), but I'd like to hear " and I don't deal with it anymore" from someone who has been treated.
I'm also speaking to Dr Andrew on the phone tonight about Eswt, to see if it might be right for me.
I'm also speaking to Dr Andrew on the phone tonight about Eswt, to see if it might be right for me.
Re: What if lifestyle changes aren't really an option?
Cool! Let us know how it goes and what you end up deciding. Also, please give my warm regards to Dr. A.brewcity wrote:
I'm also speaking to Dr Andrew on the phone tonight about Eswt, to see if it might be right for me.
Athlete until pain started in 2001. Diagnosed with PN in Nov. 2010. Probable cause: 3 difficult labors, 5 pelvic surgeries for endometriosis, and undiagnosed hip injuries. 60% better after 3 rounds of shockwave therapy in Cornwall, Ontario (Dec - Feb/12). 99% better after bilateral hip scopes for FAI and labral tears (April and July/12). Pelvic pain life coach Lorraine Faendrich helped me overcome the mind/body connection to chronic pain: http://www.radiantlifedesign.com
Re: What if lifestyle changes aren't really an option?
Just wanted to join in saying sorry you are dealing with this and I can relate to having life taken away and would love to say I don't deal with it anymore. Although even if it seems I won't need a cushion I fear going without and having it come back. I am just hoping to work my last 4 years and then at least I can sit less as a retired person but you do have more years ahead of you so I hope you find a good solution. There are a few cured folks, Celeste comes to mind and actually posts now and again. You have some good advice by the others to get you started. Best of luck.brewcity wrote:I knew some but not all of that. I guess I'll see the blocks through, ive been dealing with it for a while and its really starting to take my life apart. I feel like as time goes on its getting a bit worse, and I'm already not working. I know this really isn't considered a "Terminal" problem, but its really taken my life away from me. I've started the amitryp this week. IS this something that can "cure" or "heal" completely? I know thats a complicated question, but I feel like I don't see many success stories. I know "happy" people don't post their problems (the success story area is limited), but I'd like to hear " and I don't deal with it anymore" from someone who has been treated.
I'm also speaking to Dr Andrew on the phone tonight about Eswt, to see if it might be right for me.
Janet
2007-08 pelvic muscles spasms treated by EGS. 6/27/10 sat too long on hard chair- spasms, EGS not work Botox help, cortisone shots in coccyx help, still pain, PT found PNE & sent me to Dr Marvel nerve blocks & MRN, TG left surgery 5/9/11. I have chronic bunion pain surgery at age 21. TG gave me back enough sitting to keep my job & join in some social activities. I wish the best to everyone! 2019 luck with orthotics from pedorthist & great PT allowing me to get off oxycodone.