history leading up to PNE

[tig5]

Annmarie-History Leading up to Pubic and then Nerve pain
Since high school had occassional “tightness/pain in right buttock area. My primary care just said probavly bursitis and left it at that.

Also, before 1994, ran road race. Before race noticed my right hip flexor hurt a bit, but ran anyhow. Ran race fine and won. But then could not even walk up to platform to accept trophy due to pain in hip flexor.

Always had tight hip flexors (where messagist went) and glutes would not “fire” correctly. Also, Dr. Bailey said I had extremely tight adductor muscles. I know Dr. Potter’s report said no piriformis syndrome, but Dr. Filler’s did.

1994 I experienced extreme abdominal pain while running which led to groin pain and then nerve pain down right leg. Took off numerous months, but got no better. Frustrated, I tried to go for a run, even though I couldn’t even walk without pain. Had to stop mid way through run and get ride home from stranger. Could not move body at all withouth shocking pian. My college cross country coach rushed me to B&W to see a sports doctor. They could not figure out what it was so sent me to GYN to test for ovarian cancer-negative. After 6 months of severe pain, I went to a PT who told me I had a bulging disk on my right side hitting my sciatic nerve. He pushed it back into place and I could walk. Acted up a little 3 months later, but okay all these years later.

Never thought about it being maybe the wrong diagnosis but know that my initial pubic bone pain was on that right side, I wonder.

1994 right knee hurts on outside. Severe pain. could not walk. diagnosed as tendonitis. Took off six months. No better. At this time experience same outside of rt. buttock pain that would feel tight which Dr. previously said bursitis. This would continuously come and go. I also always had week hip flexors and adductor muscles.
Continued to run marathons on/off until 1999. Felt like I was running on only my left leg due to rt. knee pain. Tried PT, acupuncture, chiropractor, massage etc. In 1999, One Chiropractor sent me to Personal Trainer at gym. cont. below*

*After doing nothing for 6 months due to intense right knee pain again since running first long run in 1994; in 1999 a Personal Trainer said I needed to strengthen my glutes and core to keep better alignment. Therefore started to do squats, deadman lifts, roman chair, and stability exercise. Did run on off lifting days.

At this time, 1999, also introduced the following exercise to strengthen glutes.



This did it. Next day, both sides sore, but the right side much greater and deeper, right on the pubic bone. Never went away and left side now equal pain to that of the right. Tried massage. Took off 3 weeks of running. Could not flex knee to walk. Going uphill even more painful. Sitting very painful. Finally, after 4 months of pain went to doctors. Told I tore few hamstring muscles attachments from ischium tuberosity bone, which later proved inaccurate.

In 2003, had not run again since 1999, the same pain went to the left side in almost the exact same spot. (A little more towards the back of the pubic bone.)

Therefore, went to various Physical therapists, a massagist, an acupuncturist, did cold laser therapy and cortisone shots to help the hamstrings. The cortisone shot, when injected twice at the attachment site, did help the right for some time, but not the left. Cold laser also seemed to help a bit, but now it is not cutting it.

Did not exercise, but pain stayed therefore started doing the elliptical, squats, butt blaster, hack squat, as these did not increase the pain and actually made it feel better when using those muscles. Could not do deadman lifts or roman chair. Those exercises increased hamstring pain.

Lived in pain, especially when sitting and could not “stand” it any more. Therefore went to orthopedic who in 2006-2007 ordered a MRI of upper thigh and this showed no hamstring tear so he then ordered a MRI of lower back and this showed no disk problem.

Dog accident in 2008. Didn’t fall, but locked knees; knees hyperextended. Right knee pain occurred right away; left inner knee pain came next day or two days later. Outer right knee bone bruise showed on MRI done in Jan. 2008 and left knee ached and occasionally got a shooting pain on the inside of the left knee upward inside the thigh, pain got better on right knee, but worse on left knee therefore got MRI in May 2008, but no damage showed on MRI. Since then noticed I put pressure on only the outer part of left foot when bending over and squatting to go to the bathroom and not the whole foot itself. Also, I had been walking with left foot turned inward for past 2 years. This actually seemed to help groin pain on left side as well.

**2010 Pain still there for past 11 years. Angled feet certain way to lesson pain. Did get better with PT with Neil MacDermot and cold laser therapy, but worse then ever after I took some time off and then became a bit active again. When running, felt both lower hamstrings tighten immensely, then crept up to that same origin on pubic bone. Felt better after time and some PT with Neil, but then went to Camp with students and quickly darted across a road. This time pain came back even greater than before and causing much more discomfort. New feeling-right upper hip where thigh attaches so tight and left hamstring tight.

******Went to a massagist. On third visit he worked inner left quad as well as attachment site of hip flexors to the pelvis. Hip flexor felt a bit aggravated, but next day got burning tingling tearing sensation pain down left leg at first and then down both legs on the backside.

Now feel nerve pain 24/7 when standing, bending slightly over, laying down, and especially when walking and the worst when sitting down. throughout whole groin area as well as down both legs to the ankles. Burning tearing in fold of buttocks and crease of where buttock attack to hamstrings, burning down legs, electric shock feeling through glutes, and sharp stabbing and tingling in the vaginal area.

This year, 2010, tried trigger point injections in the hamstring and right buttock area and did provide relief in outer right buttock area and decreased right attachment site but did not solve problem. The trigger point doctor ordered an MRI of pelvis and X-ray of hip and they were normal. She then sent me to get a hip injection which did not relieve the pain.
Also since August 2010 tried acupuncture, myofascial therapy, PT, variety of meds, cold laser therapy, sensory nerve block. Also told I have sports hernias, but then later ruled out.

New diagnosis is obturator internus and maybe obturator externus muscles as well as maybe the adductor brevis muscle. Don’t know if tight or overstretched. Also all muscles in buttock area extremely tight causing pelvis to tilt.

Yet another new diagnosis by Dr. McGinnis of MGH-Obturator Internus muscle in spasm. Sent me to Dr. Bailey through MGH. Saw her and her PT for a year.

*Feel pain 24/7 burning/tingling/irritated/tearing sensation from crotch area up into buttock fold area and across where upper hamstring meets bum crease and sometimes nerve pain shoots down legs. Feel pain always even when laying down on stomach. Pain worse when sitting, then walking, then laying down, the standing.

Thought squats and elliptical helped, but now even those hurt.

Origin of pain, on both legs, on pubic bone. Sore to the touch/sit! But know nerve pain is problem and don’t feel as much on attachment site.

That the pain on the right side of bone is further to the front of my body than that of the left side.
Lower hamstring muscles feel tight more on left leg and upper outside of right buttock feels tight.
When sitting or going into squat position, right upper outer buttock tightens
When standing left lower hamstring and right outer buttock tighten
When laying on facedown on back, arching up back right lower back/hip area feels like a ball or lump of something hard there.
When standing, seem to stand on outer side of left foot.
When sitting Indian style feel tingling in ischium tuberosity area. Also when laying on back feel tingling/burning down back of both legs.
When walking, feels I am tearing muscles in the bum area, but doing certain glute exercises seem to help with tingling/pain down leg.
Certain stretches for lower hamstring muscle can causes more pain at top attachment site.
Sitting hurts and more sensitivity walking up ramps/curbs
Pain can shift according to how I am positioned. Can be sharp pain on one leg or both legs depending position. Can be burning down both legs(when sleeping on stomach or just one leg, again, depending. Can tingle at both attachment sites or just one. But always feel some sort of pain.

Major concern is on pubic bones.
2006 MRI upper thigh = normal
2006 MRI lumber spine = normal
2007 MRI pelvis = normal
Jan. 2008 MRI right knee = bone bruise
May 2008 MRI left knee = normal
2010 MRI pelvis = normal
2010 Xray hip = normal

Since nerve block on 12/22/2010 OI left side
Never went through honeymoon period.

Major noticeable factors:
Burning at tailbone/coccyx area when something touching the buttock area and electric shocks through buttock area when something touches this area or I slightly bend over (eventually goes down legs to ankles), and then tingling sharp pain in vaginal area.
When I try to stretch the right outer hip/glute area, the left leg goes more numb/burning down to ankle.

*Two days after procedure felt that sore feeling on left glute bone. Further back than before. Past 11 years further up on pubic bone. But upon touching Rt. pubic bone had that same sore pinpoint site where the whole thing started in 1999!

***Forgot to mention dog accident in 2008. Didn’t fall, but locked knees; knees hyperextended. Right knee pain occurred right away; left inner knee pain came next day or two days later. Outer right knee bone bruise showed on MRI done in Jan. 2008 and left knee ached and occasionally got a shooting pain on the inside of the left knee upward inside the thigh, pain got better on right knee, but worse on left knee therefore got MRI in May 2008, but no damage showed on MRI. Since then noticed I put pressure on only the outer part of left foot when bending over and squatting to go to the bathroom and not the whole foot itself. Also, I had been walking with left foot turned inward for past 2 years. I also think angling left foot in and up on outside of left foot helped pelvic pain on left side. Just recently, on Day 12 after nerve block on left obturator, am doing this again due to pain returning on left inner knee, but I think nerve pain in groin area better when the knee pain came back. Left inner knee extremely sore and trying not to angle and walk “normally”. Inner left knee pain continuously still to this day since Day 12 after nerve block.
Related?

*On Day 14 went to Dr. Bailey for trigger point injection. She said that knee pain was muscular and was hesitant to do injection on that area of left knee because it overlaps with adductor muscle and obturator nerve, but she did do injection. Got many jumps, especially in left quad. No pain until next day. Had more pain in rectal and vagina area more tingling. Lasted two days, then just noticed a tingling in left knee/quad area.

Bending forward to look at muffins in oven, notice numbness down left leg.

Still have pain in rectal area and vaginal area more so upon walking and sitting, then upon laying on back.

Still notice when standing still, feel burning down to ankles.
When standing still for long period of time, feel as if nerves being pinched throughout sacrum area and tingling in vaginal area.

When angled(in crouch-up side position) or laying flat and something, even something very soft, hit buttocks feel nerves being pinched or inflammed and burning and electrical shock feeling through buttocks and really more burning pain right at tailbone/coccyx area. This then causes tingling in vaginal area and eventually numbness burning down leg.

When sleeping and curled up position, feel electric shock feeling through buttocks and worse burning rt. at tailbone/coccyx area and tingling in vaginal area. Eventually will feel burning down to ankles on the side I am laying on. Tend to want to angle and curl up on right side because laying on right side seems to lessen nerve pain, but this causes outer right hip to tighten and become very painful. No matter how much it gets relaxed from massage, acupuncture, chiropractor, it comes back!

When laying on back, same burning at tailbone/coccyx bone and then will feel tingling in vaginal area.

When whipping self after urinating, clitoris is painful. Also is painful feels painful with clothing touching it. After walking, feel I need to stretch it out.

Going upstairs seems to help nerve pain. Always has. Seems if I can strengthen upper hamstrings/glutes then will help pain, but feel like my those muscles don’t fire right no matter what exercises I have tried in the past.


Continued with numerous nerve blocks, obturator, pudendal, clitoris, and piriformis injection with Dr. Quesada. Seemed to help. Had 3 Telsa MRI with Dr. Potter. Showed entrappment of PUdendal nerve, more so on right; marked deviation of pelvis tilted to the left; and cyst on right obturator nerve.

Had MR Neurography with Dr. Filler; showed “IRRITATIVE CHANGE WITHIN THE PUDENDAL NERVE IN THE ISCHIORECTAL FOSSA ASSOCIATED WITH BILATERAL PUDENDAL VEIN DILATATION, WHICH IS INDICATIVE OF OBTURATOR INTERNUS MUSCLE SPASM. ADDITIONALLY, THE RIGHT S3 SPINAL NERVE IS SEEN TO TRAVERSE THE RIGHT PIRIFORMIS MUSCLE WITH ASSOCIATED HYPERINTENSITY CHANGE AT THIS LEVEL. THESE FINDINGS WOULD BE CONSISTENT WITH A PIRIFORMIS LEVEL PUDENDAL SYNDROME AT LEAST ON THE RIGHT SIDE AND IS SIMILARLY EVIDENCED BILATERALLY OF MORE DISTAL PUDENDAL IRRITATION AND POSSIBLE BILATERAL OBTURATOR INTERNUS SPASM. BILATERAL PUDENDAL IRRITATIVE CHANGE WITH PUDENDAL VESSEL DILATATION ON THE MEDIAL ASPECT OF THE OBTURATOR INTERNUS MUSCLE. THESE FINDINGS ARE CONSISTENT WITH MUSCLE SPASM BASED PUDENDAL SYNDROME.”

I will post these two reports as well.

Currently
Bilateral TG surgery on July 12, 2011 with Dr. Conway. EMG numbers did not decrease as Dr. Conway would have liked. He said it would take long time due to number of mechanical and muscular issues over the years.

Since surgery, “fluttering” feeling in the vaginal area is gone. Still have rectal burning and burning down thighs when laying down. When walking, rectal and vaginal burning as well as buring down thighs into ankles and feet. Right hip/upper glute continously painful and feels tight as well as left foot pain continous. Occassionally, left hamstring and thigh feels pains in various spots and tightness in left hamstring. I don’t sit. Standing still causes pain down to ankles and since August 17th of this year, got injection into left hamstring muscle by Dr. Quesada for muscle spasm, but immediately it sent pain to outside of top left foot. Pain still present, but moved to top, more inside, of left foot.

[Lernica]

Wow! Good job! You might want to post this under Case Updates where only members can view it.

Are you taking any pain meds? Are you still working? Have you tried swimming as a form of PN-friendly exercise?

How do you think you developed your PN? Do you thinking it was related to your marathon training?

Hugs.

[carolynm]

Anne Marie,

I dont' have much to add just that it's nice to meet you and I'm sure so much of what you are going through must be post-op nerve pain from that nerve being handled. I'm sure you are anxious for your symptoms to go away but you are now far out from surgery and that nerve has been handled. I send you my best wishes for recovery.

cari

[Violet M]

Ann Marie, it sounds like you've lived with pain most of your life and that you have a bunch of things going on at once. I hope that as you recover from PNE surgery the worst of your pain will diminish. Please take it easy -- it takes time to heal from PNE surgery.

Best wishes,

Violet

[helenlegs 11]

I hope you continue to improve post surgery.It would be wonderful if coming round after this every pain would just melt away but as the girls have already indicated, it seems to just take time.
It would be good to see what Dr Conway's surgical report said.
Are you having any physio now? If your pelvis is deviated and tilted have they targeted your SI joint before surgery at all?
What happened when they targeted your piriformis muscle? (you mentioned tight buttock as one of your first symptoms) I just wondered if this muscle is continuing to spasm and drawing the hip pain into it as your hip mri was normal. You do seem to have sciatic involvement where do any of the Dr's think this is coming from have they said?
We seem to have very similar symptoms btw although I don't have any pubic bone tenderness.