New here - think I have PN ? Or is it a disc bulge?

[Jason85]

Hi,

So looks like I found my way here by looking up the symptoms sets in December.

I used to lift weights, Feb 2011 I squatted around 300 lbs and heard a snap in my pelvis. Had 3 months of severe back pain (nothing neurological), I got better then in July 2011, I lifted weights again and got the worst sciatica of my life. It went away after 2 months, though I did an MRI scan and it showed a left bulging disc at L5S1 that is touching the S1 nerve root. I thought it was pretty bad then but in Dec 2011-Jan 2012, I started getting symptoms in the butt and groin and caused me to panic thinking it was cauda equina. I had sciatica, back pain, a knife pain through the crotch, urine dribbling, and weak rectal pushes (but also felt I had a knife up it). I had another scan done and it turns out that they saw a central disc bulge at L5-S1. My penis basically turtled in and erections were noticeably weaker. Eventually the physio, traction, and massage helped out as well as getting a new bed that wasn't sunken in. I eventually stabilized in 3 months with minor pudendal symptoms, I was unable to sit on anything hard (upset pudendal areas) or anything too soft (caused sciatica). This December, as I was scheduled for a month long trip to Asia I got nerve hypersensitivity while sitting and cancelled the trip at the airport. Since Dec 4th, I've been unable to sit down. It started with having a numbness on the surface of the butt, then it going into a light perineal discomfort and then losing the ability to sit or feeling like I'm going to lose bladder control. I'm confused if this is pudendal neuralgia or if it's an L5S1 pushing on the cauda equina. I'm in Toronto Canada, so it might be awhile to get good help based on lack of PN experts up here and a really really slow health care system...I was lucky to get a neurosurgeon referral on Feb 14, but I doubt it'll be too fruitful since my MRI says minor bulges and just minimal indentation of thecal sac (2012), or minimally touching S1 nerve root (2011). Seems to be degenerative. I'm ok sitting on toilets though and in public transit to get to work (I work an office job), I have to sit on my coat that has gloves/hats in the pockets forming cushions underneath my legs so that the perineum does not contact the seat.

Any ideas? It happened recently so I'd like to have it dealt with quickly. It was worse last year which is why I'm not so freaked out but I would like to be able to sit again. I was convinced that I should have had a microdiscectomy all this time but now I have my doubts. So far I'm just walking on a treadmill and using a rumble roller on my piriformis (and stretching). I might introduce swimming soon since I'm getting out of shape...

Oh yeah I've had horrendous muscle guarding for the past 2 years. The spinal erectors get tight as does the piriformis and SI joint mobility sucks. I'm wondering if a microdiscectomy would at least help with the guarding. I'm wondering if I've gone past the best outcomes time? I'm getting pretty depressed by it, I'm 27 and I've barely started out life (I'm pretty slow at stuff). Hmm maybe if I'm fixed up I'll try for med school again (this back problem has been holding me back) and specialize in this area...seems to cause a lot of suffering and lack of decent help in Toronto...

[janetm2]

Welcome Jason,
of course I am sorry you may have PN but you are in the right place to help sort this out. I do not know much but I can warn against swimming that involves kicking as that would makes things worse if you do have PN or PNE. Please see the FAQs off the homepage for lifestyle adjustments and there is a good deal of info there to guide you as well. One or more of our more knowledgable people will be by to give you more support and advice. Very sorry this hit you so young and you have had such a rough time. Try to avoid anything that causes you pain, lifting stretching bending. For a makeshift cushion you can get gardening kneeling pad and cut a U from the back center where the cut allowa you sit bones to fall on that inside edge and that will keep the pressure off. To measure forthe cut put a piece of paper down and two hardback books on top with binding in facing each other the move 2-3 inches apart and sit until you get the sit bones on the bindings. Trace and the use to cut pad. Good luck
Janet

[Violet M]

Hi Jason,

If you are concerned about cauda equina you probably want to head for the ER to have it ruled out but if it's pudendal neuralgia, there are some excellent PT's in the Toronto area who treat people with PN or who could at least assist you with a diagnosis and give you some input on what to do next.

http://www.pudendalhope.info/node/62

Nelly Faghani, Carolyn Van Dyken....

It can be very tricky to sort out whether the problem is from the nerve roots or the peripheral pudendal nerve. Typically the PN comes off S2,3,4 so I don't know if your L5-S1 issues would be the cause. There can be variations in anatomy.

But if you could get into see one of these PT's, that might give you some more pieces to your puzzle.

Best,

Violet

[Jason85]

Oh I'm not concerned about cauda equina (I am but I doubt this is urgent since it's been going on for months lol, I have to wait my turn to see a nerve specialist (likely unfamiliar with PN) it seems). I was referred to a urologist after waiting 5 months and the best he could do is give me cialis...MDs haven't been too useful, physios and RMTs are better, even if not 100% correct they at least care more. From what I read, the neurosurgeon I'll be seeing won't be too helpful unless he wants to slice the protruding edges of my disc. I'm sure if they sliced it in 2011 I probably wouldn't be in this prob. I heard back pain can change it's story every year or everytime it comes back to strike. Microdiscectomies seem to have good success rates, I know a few people that have done surgery and are happy about it (everyone I know, though everyone is different). But whether that will solve PN symptoms...who knows, but it'll make things easier to work with if the muscle guarding subsides.

Yeah I checked out the physio list, I'll make time to see them but now that HR knows about my problem at work, it's become much more inflexible ironically enough. Have you had experience with the two names you've listed? They're out of range for travel, I can probably see Angelique Montano-Bresolin or Laura Disenhaus...

L5S1 could be part of the causal chain. The myotomes and dermatomes associated with L5S1 nerve roots are damaged. A central bulge can do it, but also that bulging disc can cause the muscles in the area to tense up in a really nasty way to grab my sciatic and pudendals...It's hard to tell...All I really have to go by is the MRI picture which may or may not be significant and my symptom set. Reading that people have been cured/relieved gives me a little hope - just wish there was more research or awareness of this area. Though given the stats, I'm probably 1 of 300 unfortunate people in Canada to have this.

Thanks for all the help, I'll look at the FAQ for lifestyle adjustments and I was thinking the same thing with the gardening pad. I think at this point I should try to avoid making it worse. Sometimes I can't avoid sitting =/. I work at an office job which is a definite risk factor. *sigh* I don't know what possessed me to lift weights that heavy over so long...Everyone I help out now with fitness and stuff I just keep them off squats/deadlifts or heavy rep low weights.

[helenlegs 11]

It is just such a conundrum Jason. Sorry; I know you have already got that one figured. Welcome btw.
I have had both L5/S1 and then pelvic problems separately (and a successful microdiscectomy) so I'll say what I think the main pain differences are.
Any bending and getting back up from that bend was awful with L5/S1, had to 'climb' back up, hands gradually progressing up on thighs for support . Could NOT do a straight leg raise without crying out part way. Of course these are the standard back problem clinical tests,forward/back and side to side flexation and SLR; with good reason. Pain more in the morning, had to take medication to get out of bed, where as now a.m. is the better time for me.
I can do all of those spine tests now . . . . I'm not saying they don't cause any pain but not the excruciating kind that L5/S1 did. Now I can feel the nerve pulling, tightening when bending at a certain point (still have sciatica but from piriformis) I put it down to my piriformis issue being a 'softer' muscle/scar tissue entrapment than against spinal bone. This is my theory anyway.
I can still reproduce the involuntary cry out, but that is when I locate the path of my nerve and press (sometimes you can get the exact right/wrong! place ) More a palpitation/press than a mechanical movement test.
My microdiscectomy worked a treat, I have to say. Apparently there isn't much left of the disc as it was ' very large'. BUT I had done every physiotherapy, tens, chiro, therapy available and COULD STAND IT NO MORE!!! It was 100% necessary.
There can be both situations of course, there is a double crush syndrome, sometimes as you say there is a secondary pathology and resulting pain but it could be both together. . . . Sorry would love to say something much more positive. . . .
Not sure if you can relate to this at all? Personally I would hold off on any spinal surgery, until you get to the CAPITAL LETTERS and APOSTROPHE's!! and try and work things out a bit more in your head.
I would always say that usually L5/S1 solutions won't solve PN entrapment although it could help PN irritation brought about as a secondary (knock on effect) to the lumbar spine issue, BUT I have been trying to tell the medics around me that it is 'not my former back problem' causing me pain now (the clue is in the word former and no nerve impingement showing on MRI) So I do shout this one a little louder than others
Take care.
Helen

[Violet M]

.

Have you had experience with the two names you've listed? They're out of range for travel, I can probably see Angelique Montano-Bresolin or Laura Disenhaus...

I haven't had personal experience but other forum members have highly recommended Nelly. I've e-mailed with Carolyn and she seems very knowledgeable -- I think she does training/seminars for other PT's. You could do a search using the search bar to see if anyone has posted about Angelique or Laura.

Violet

[Jason85]

I'm back.

So I've made a lot of progress in the past month.

1. I had a new bed constructed though it's much too firm, I came back to this site tonight to figure out what people were doing about beds. It seems like my searches found that a lot were using 3-4" memory foam toppers. I've been researching beds a lot recently and I've successfully been able to find factories that can build memory foam mattresses with 5.3 lbs/ft^3 high quality foam for 750 in Canada (in USA it'd be much cheaper). So I'll have to modify a bed I just received that just sparked up my symptoms by putting tons of pressure on my butt (very firm latex which I'll modify to memory foam).

2. Books - Headache in the Pelvis graciously suggested by medguy via PM Amy Stein's Heal Pelvic Pain [related search] - those helped tremendously with morale and exercise suggestion. Talks about mechanics of this problem.

3. Exercise - rumble roller foam rolling on trigger points suggested in books listed in #2 and stretching - these helped a lot. I feel so much looser

4. Physio - I contacted Nelly - she said she has a protege named Angelique that operates in the downtown core. I'll continue seeing Nelly - she's very good, calm, re-assuring and very knowledgeable. Definitely helps with morale when first getting this thing. I felt like my life had ended since I lost most mobility (I always have to hit the floor when symptoms get bad). She suggested #3 (which I had been doing already) and using an Acuball to break ventral triggers. She is not taking new patients apparently at Richmond Hill and Aurora location but I'm going to the Vaughan location. She's very popular though fortunately she's trained others, Angelique being in the downtown area. It's good she's having me do homework. Nelly can't speak for L5S1 but it definitely isn't cauda equina lol, she confirmed tight muscles internally so she said that's a good indication. It's more of a conundrum if there's symptoms with no muscle tension.

5. Cushions - I've ordered Interstitial Cystitis network cushions at Nelly's suggestion, got 2 of them with their cold packs for about 109 =/, Canadian shipping was killer but I hope those will at least give me the 'luxury' of sitting down for just a bit.

Thanks for all your help on this board. Great resource.

[Jason85]

Oof missed Janet's sage advice on the cushions. It's ok, with no social life or dating etc b/c lack of mobility I have plenty of disposable lying around lol [I'm thankful everyday for public transit where I don't have to sit to get to work]...Just hope those cushions can make it through Canadian customs. Nelly also said I could do elliptical or swimming for 5 minutes at a time. She knew about this site.

I think it'll help to shed off some weight. As an ex weightlifter, you're in a whole different world when you can't work out...

[Violet M]

Hi Jason,

Glad to hear you have found some helpful strategies. Just wanted to say that the elliptical sort of sent me over the edge from bad to worse but maybe Nelly has other patients who are doing fine with it. Just wanted to put that out there since you said you are a weightlifter and I was also when PNE hit. There is a lot of repetitive hip motion which according to Dr. Antolak can be a problem for PNE'ers and is one reason we are supposed to avoid going upstairs. I don't want to make you feel like there are no exercise options left for you though -- just proceed with caution. And good luck!

Violet

[Jason85]

Did some searches on bodybuilding websites to see how they dealt with it. I'm hoping my muscles are tight, easiest fix:

http://tnation.t-nation.com/free_online ... ve_problem

What kind of surgery did you have? What was causing your PNE (anatomywise)?

Yeah she said to take it easy on elliptical, start with 5 min. Same with swimming.