Rectal pain, questions

[seawalker]

This is my first post, and a long, winding path has brought me here just like many others

A bit of background info:

Last year I was diagnosed with a rare, benign tumor growing inside my cervical spinal cord. Ironically, along with CPPS, this type of tumor seems to occur frequently in people in there there 30's (don't worry the chance of having one is literally 1 in a million. Lucky me!). Luckily I live next door to Johns Hopkins, and the world class neurosurgeons were able to remove it. But I am left with numbness and tingling from the waist down, muscle fatigue, and some trouble voiding both bowel and bladder.

About a month after the surgery I developed the "golf ball" sensation in the rectum. I had a colonoscopy which showed no pathology, so the docs (GI, Neuro, Internal) and I chalked it off as neuropathy. Seem to make sense. I dealt with the sensation until this past fall, when the intermittent golf ball sensation slowly developed into a chronic 4 x 4 block of wood up the wazooo as the weather got colder. I was essentially getting constant proctalgia fugax spasms. I went to th ER at Johns Hopkins and spent a week in the hospital on morphine, another colonoscopy, and an MRI of my pelvis. I was being told by neurologist that this rectal pain may not be coming from my spine as my injury was not in the lumbo-sacral region. Long story short, the diagnosis: Levator ani syndrome. The docs recommended I look into getting an implanted intrathecal morphine pump. Yeah Right!

Where I'm at now

Basically what I'm discovering from intuition, A Headache in the Pelvis, and now this forum, is that perhaps my horrible rectal pain is a result of tension and anxiety and unconsciously contracting my pelvic floor. Rather than this being caused by my nerves/spine directly, it is the mental trauma and weird new sensations that I've been fighting as a result of my injury.

I am hoping this is the case and that I can find some relief from this. My rectal pain is so bad now that I can not sit at all. I have the heating pad on high and up my but crack all day. If I go out of the house, my wife drives me while a lay in the back seat on my heating pad. Its crazy to think that this has become my disability rather than severe neuropathic pain or paralysis that many people with face with spinal cord injury. I can no longer get out much and had to stop working completely a couple of months ago from this.

I was kind of shocked coming into this forum and seeing many folks on a regimen of Elavil and or neurontin/Lyrica, the classic neuro pain combo. I found these indirectly help the rectal pain, but I was taking them for the tingling in my legs. Another reason I was believing that this was nerve pain for so long.

In addition to my god awful levator/sphincter spasms, I pretty much have all the other symptoms of CPPS. Perineum pain, testicle pain, bad hip and lower back pain, tip of penis burning, urinary urgency. My urinary troubles I think are more from my bladder sphincter (which is perceived as an enlarged prostate).This is common with a cervical spine injury, as well as a spastic external anal sphincter. Flomax helps a little with this. I take a low dose of Effexor (SNRI) because I find urinary retention to be much less than with tricyclics. But these are nothing compared to the rectal pain.

Some questions

I have started PT, but have only made it to the initial session do to pain. If I have to live with a heating pad up my ass all day how the heck am I supposed to let the therapist message and palpate my levator muscles! Its like a catch 22. No therapy no relief, no pain no gain. But the pain is just too severe to do any work, even with pain meds. I have been considering trying to just start with internal home therapy first, and then graduate to the real therapist. I'm not sure how I should proceed internally though Any recommendations?

My other question is in relation to trigger points. From what I have read on this forum, the tenderness and pain I am experiencing in my rectum are not trigger points necessarily, rather fatigued and sore levator muscle correct? Is this something that just needs to be massaged then? If i am looking for external trigger points to palpate for my rectal pain, should these points be sore spots, or are they just points that refer pain only?

Thanks for listening...er reading!

[superuse]

I'm not sure, but I seem to have read that c4-v5 or c6-c7 problems are related to L'hermittes sign. Tingling thru testicles/perineum /lower areas when putting chin to chest. Several other conditions including MS

viewtopic.php?f=37&t=5291

Seems to me this was the major link to c6-c7 problems, but there may be other pelvic pain probs also linked.

Some of this may relate to your exercise history also. (see bottom of signature)

get well
-jjf

[seawalker]

superuse, thanks for the reply. I'm a little confused, but I think you are saying that there is a connection between the cervical spine and the pelvic floor? Luckily I don't have the L'hermittes sign, but I do get shocks in my feet and hands. But yes, cervical spine injury is associated with spasticity of the pelvic floor muscles, especially the bladder and rectal sphincters, I'm not as sure about the levator ani, and I don't think many experts know to what degree.

I don't have a doubt that my injury plays some role if not to excite my nervous system, but what puzzles is the fact that I have met few others with the degree of pain and bowel dysfunction in the spinal cord injury community. So my hope is that a lot of my symptoms are from chronic tension of the pelvic floor, anxiety, fighting the pain, catastrophic thinking etc. That is my hope. I can change that. Otherwise I am screwed.

I've been talking with my GI doc about Botox. I was hoping to try therapy first. My GI said the one study she was familiar with showed no difference vs the placebo

[webslave]

Seawalker, there is a link between spinal injury and spasm. In spinal injury patients, reflexes may become exaggerated over time, causing spasticity (increased muscle tone). Cervical spine injuries are listed as causing "loss of normal bowel and bladder control (may include constipation, incontinence, bladder spasms)". MedlinePlus suggests:

Muscle spasticity can be relieved with medications taken by mouth or injected into the spinal canal. Botox injections into the muscles may also be helpful. Pain killers (analgesics), muscle relaxers, and physical therapy are used to help control pain

From the experience of chronic prostatitis / chronic pelvic pain syndrome patients, we know that spasticity in the pelvis can become self-reinforcing in a feedback loop (known as "windup"), and this could well have happened to you too.

I'd be interested to see how you respond to intrarectal massage and triggerpoint treatment.