Entrapment or just pudendal irritation

[seawalker]

Hi all, first post to the forum. I have a ton of questions.

My medical history is complicated, but my problems began with a spinal cord injury.(so I do know nerve pain) .Since then I have have had rectal pain/fullness, proctalgia fugaux spasms and problems having complete bowel movements for over a year now. After six months of this, the rectal pain slowly got worse and my butt numbness increased significantly, and I have been unable to sit for months now. My butt feels like it is bruised all over when I sit, and I start to feel a "throbbing" sensation, different from the classic nerve vibration feeling. I used to be able to sit on a donut cushion but now all I can use is a toilet seat. I have always had numbness in butt since my spinal cord injury, but I can tell that these new problems are secondary to my spine injury. I have been unable to sit at all and can no longer work or even drive for more than 10 min from home on my make shift toilet seat. When I do go out, my wife has to drive while I lay down in the back seat of the car. It wasnt always like this, and it sucks! So, im pretty sure I have pudendal neuralgia at this point. Entrapment, im not so sure of.

I am currently in pelvic floor PT. Is there a way to tell if the pudendal nerve is entrapped or just irritated by my levator ani muscles? I did have a pelvic MRI but it wasnt on a 3T. Besides, I don't believe you can see enough detail to make this diagnosis with MRI right now.

I am scheduled to go to the pain management clinic at Johns Hopkins next month. Although it is one of the best, I am kind of concerned about what he will wan't to do. The flares from pudendal blocks sound extremely painful and useless from the post I have read here. One of my docotrs wants me to get an intrathecal pain pump, and I'm terrified of this.

Final question, has anyone had more success with suppository formulations (valium, gabapentin etc) vs Oral? I am going to pick up some B & O suppositories tommorow.

Nice to meet fellow sufferers,

Jason

[Violet M]

Hello Jason,

Welcome to the forum. I'm sorry to hear about your injury.

It can be difficult to distinguish between an entrapment and an irritated nerve from muscle spasms. Have you had any internal (via the rectum) PT yet and if so, did it help or did it make things worse? If your PT knows much about pudendal neuralgia they should be able to press along the course of the nerve via the rectum to see if you have pain at any of the typical areas of entrapment. That can be one sign of a possible entrapment. You may have read Hollis Potter is having some success using the 3T MRI to determine if there is an entrapment.

Some people have good luck with suppositories -- you really won't know until you try. B & O's work well for some people but typically they are considered a temporary solution while you are seeking other treatments that will bring more permanent relief.

I understand your concern about nerve blocks because some people have had problems with them but most people do not have any permanent problems and they can be helpful in the diagnosis. Once in awhile they can give permanent relief but we don't hear of that happening very often around here.

Best wishes as you search for answers,

Violet M

[HerMajesty]

Personally I have not found any difference with suppository vs. oral meds, except price.
What kind of spinal cord injury did you have? I wound up with tarlov cysts at the level of my S2 nerve roots (search this site to find our thread on tarlov cysts, if you are not familiar). My point being any kind of lesion or impingement at that level can indeed cause pudendal symptoms without an entrapment. Also I believe an injury above that level might impact anything below it (??)
There seems to be no evidence to suggest whether you "do" or "do not" have an entrapment. If you look on the MRI/MRN section of this page you will see that a lot of people are getting 3T MRI's with Dr. Hollis Potter in NY, who has developed software that seems to be successfully locating some scar tissue entrapments. It is also possible to have a mechanical entrapment due to pelvic joint injury - that was the case with me and I had excellent improvement when my pelvis was realigned. This will not show on an MRI and requires PT Manual Therapy assessment. It might be a possibility for you if the spinal cord injury was sustained during an incident of general trauma such as a car accident or fall.
Depending on the nature of your spinal cord injury, there might be any number of diagnostic investigations you could do to determine if the nerve is irritated secondary to spinal cord pathology. That and some more investigation into possible entrapment, and if so by what mechanism, would be necessary to determine your underlying cause. I think treatment is most effective when driven by determination of the underlying cause. We all have similar symptoms but the etiology varies.

[RJR]

Hello Jason,
Not sure who you are seeing at the pain clinic, but I can say that Dr Jim Campbell is very knowledgeable, having been a full prof of neurosurgery, having done a the pudendal decompression a number of times, and having a strong interest in pain management. He called me entrapped almost a year before my Potter MRI and surgery in Phoenix. He is leaving Johns Hopkins in the next few months but has the depth in perhaps understanding and guiding you on your complex case.
Best wishes,
RR

[seawalker]

Thank you all, great advice!

I will ask my PT next time to poke around for the pudendal. I just statred PT not long ago and we have not been able to do much internal work due to extreme pain. I am hoping that a nerve block might help me along. So far, oral drugs only take the edge off.

Not sure who you are seeing at the pain clinic, but I can say that Dr Jim Campbell is very knowledgeable

Of course! I'm assigned to see Dr. Christo, but I was actually hoping to get Campbell. Maybe Dr. Campbell is not taking new patients at this point, but I can only assume the few attending doctors at the clinic collaborate at least? But thanks for that, I will mentioned Campbell's experience to Christo and see what he says. I also see a doctor in the neurosurgery clinic ( head of peripheral NS) so I will ask him as well about all of this next time I see him.

What kind of spinal cord injury did you have? I wound up with tarlov cysts at the level of my S2 nerve roots (search this site to find our thread on tarlov cysts, if you are not familiar). My point being any kind of lesion or impingement at that level can indeed cause pudendal symptoms without an entrapment. Also I believe an injury above that level might impact anything below it (??)

HerMajesty, Im sorry to hear about your cyst. I had a cervical tumor inside the spinal cord itself and it left me with a syrinx (cyst at the center of the cord) down to my T spine. It has definitely made complicated the diagnoses of my pelvic floor problems. I was told all of this was "below level" neuropathic pain for a year. I do have some neuropathic pain from the chest down, but I never really accepted that it was just central neuropathic pain and I was right, but the tumor did indeed set things off in my pelvic floor.


Jason

[HerMajesty]

I looked up your condition and I found a lot of relatively vague info, such as "surgical treatment may be indicated" without any description of the type of surgery or any list of Doctors who do it. Have you found any good support websites for syrinx or any national / international provider list?
If I have surgery for the tarlov cyst I will do so with Dr. Frank Feigenbaum in Kansas City MO, I wonder if he also treats your condition since it sounds like there are some similarities? Before you go through all the pelvic diagnostics, I would think it would be smart to consult with a surgeon who specializes in your spinal condition and see if he or she believes the pudendal problem could be caused by the spinal disorder. Maybe there are diagnostics they could do to discern this (like maybe tap and drain some CSF to see if the temporary relief of pressure relieves your pudendal symptoms; just speculating here of course).
I know since surgeons that treat tarlov cysts are so rare, many of the ones who do it give free phone consults if you send in your records, to save you the trouble of running all over the country if they do not think they can help you. maybe this is the same for your condition?
Personal opinion, I would start there. it seems like it would be too much of a coincidence for you to have a major spinal disorder AND a pudendal entrapment. Not impossible but unlikely.

[seawalker]

Actually I had surgery to remove the tumor (intramedullary Ependymoma) in 2009 at johns Hopkins. Since the tumor was inside the spinal cord (central canal) they had to actually open up my cord, and it is not without consequences. Its extremely rare to have one of these, but I was a lucky guy. I'm lucky to still be walking. The cyst (called a syrinx if it occurs in the cord itself) is what really did the most damage. I'm not sure about tarlov cyst, which I read is also an accumulation of CSF, but once a cyst forms it does irreversible neuron damage. Any surgery at this point is to stop progression but that is unlikely. I can understand your hesitation with surgery. Im guessing there are no guarantees? Actualy, i'm curious how CSF even makes it to a nerve root?

I'm pretty positive my pudendal problems are indeed pudendal/peripheral for a many reasons. I had previous minor pelvic pain before all of this tumor stuff. As my levator ani has been progressively irritated, my butt eventually became very numb and painful, independent of any other new nerve pain or symptoms. Doctors were very quick to say it was due to my injury for a long time but I finally convinced them this was secondary. They are completely ignorant to pelvic pain, even my neurosurgeon and neurologist. Ive been straining with bowel movements everyday for over a year which has really flared things up. PT is the next step. My biggest concern at this point is that my spinal damage is causing some spasticity of my internal anal sphincter, in which case i'm going to have to look for something more drastic.

Jason

[HerMajesty]

I know botulinum toxin (BOTOX) has been used in the internal anal sphincter for spasticity; it wears off in a few months but doing that periodically might be a less drastic approach.

[seawalker]

Last week I had a Ganglion Impar block. While it improved the ease of my bowel movements temporarily it did not help with my deep rectal pain. My PT said that my levator ani was not tense or shortened at all while that block was in effect. However, she palpated along the corse of the pudendal and I felt a tremendous stinging sensation. Bingo! Yesterday, she palpated again and things were tight again.

So, I am not sure what to do next. I think a pudendal block. However, although my pudendal was still giving me pain when the pelvic floor was relaxed, I imagine it could still be irritated vs entrapped from chronic tightness.

My colorectal surgeon recomended a temporary colostomy to give the pelvic floor a break for a while. I am going to try botox and neurolysis to the ganglion impar first i think. its a tough decision. But as you guys know, its better than lying on your side all the time! I almost dont care what gets mutilated at this point as things are not resolving with PT and I want my life back.

[HerMajesty]

I got temporary relief from an impar ganglion block too, but the Doctor who did it explained to me:
1. The positive effects generally only last about a week, it is not expected to have a long term impact on your symptoms.
2. The only diagnostic information a successful impar ganglion block really gives, is that your autonomic nervous system is involved, which is kind of a no-brainer to begin with. It doesn't really tell you anything else about the source of your pain.
I made my own decision to try it anyway in case it "calmed things down" on a more permanent basis, but it didn't.
Not sure about pudendal nerve blocks or a colostomy, of course all this is your decision. The colostomy seems very drastic, I have never heard of it being done just to give the pelvic floor a break. How much break will it get, if you don't have to use your pelvic floor for BM's but you are still tensing it up due to pain? Regarding pudendal nerve blocks, I would suggest for you to read the section on this board dedicated to this topic. I don't read up on that section much because I already got my nerve blocks and they were diagnostic not therapeutic, so I don't take an interest in the subject anymore. But I know there was a thread recently about whether or not nerve blocks ever really helped anyone. Check it out and see the responses.