Health Organization for Pudendal Education

Hi,
I just had an MRI done not (Potter) and I was wondering if anyone can provide feedback.
I'm not going to type the whole report as I already did, it took about 45 mins. to type and when I hit preview it made me log back in and my whole report disappeared.

Pn stared for me in early 2011. I had a nerve block in July of 2011 which confirmed it was my pn.I immediately stopped sitting. I was put on Amitriptyline 25mg and Gabapentin up to 1800mg. Even with the medication and not sitting my pain progressed but still mild most of the time (exception bm's) and also hurt when up and about. Only relief was lying down. So did a lot of lying around for a year which was not very good for the rest of my body. Of course I had a lot of muscular problems in pelvic area with trigger points in the back of my thigh. My burning pain was only on left side perineal area between inner thigh and vagina and felt very superficial. I never had, stabbing, electric shock, or foreign object feeling, just burning in area described. Just recently I've had some burning around anus, but that could be because I've just been diagnosed with having a rectocele and guess that could be the reason for new burning in that area.
Here is the short version of what MRI found:

There are somewhat prominent Tarlov cysts present posterior to the S2 vertical body. The larger of the two is to the left of midline and is seen to measure 1.6 cm in greatest dimension.

IMPRESSION:
1. Bilateral Tarlov cysts posterior to the S2 vertebral body.
2. Diffuse bulge of the annulus fibrosis with desiccation within the nucleus pulposus at all levels within the lumbar spine with findings consistent with concentric annular fissures within the posterior aspects of the annulus at the T12-L1-2 levels.
3. Bilateral facet arthropathy L4-5 and L5-S1

Forgot to mention I have been off all medication for the past several months. I do use a amitriptyline/ketamine creme in that area of burning and I'm doing better than last year. Of course I still have flares and muscular problems and cannot sit. My question is If it's from Tarlov cysts shouldn't I be getting worse over time and not better? I do wonder that it's noted that left sided Tarlov is bigger and I only have pain on that side.
Thanks

Hi Laura,
Having had tarlov cyst surgery myself I still can't say precisely if tarlov cysts can be the cause of your PN because since they cause compression all the way up at the nerve roots, they can cause any kind of pathology below and two patients will not necessarily have the same symptoms.
A typical but not universal hint that tarlov cysts is the cause is abnormal conduction in the feet and/or legs. This might be any or all of the following: foot and/or leg pain, lower extremity weakness, and loss of sensation. Weakness and loss of sensation might not be readily apparent without a neuro exam or neuroconductive studies; I did eventually realize my leg muscles were weak because I deteriorated to the point where I could not take a walk without injuring a knee or ankle; but before that it wasn't really obvious. I didn't notice the loss of sensation either until the neurologist demonstrated it to me with the pin prick test, which you can try at home - gently prod various areas of the leg and foot with the tip of a pin which should of course feel "sharp"; with loss of sensation it will feel "dull". It was dull to me over the tops of my feet and my calves.
A near universal symptom of tarlov cyst disease is sacral pain or tenderness. I did not have any sacral pain which is unusual, but when I actually checked I did have tenderness, meaning when I pushed over the sacrum with a finger it was sore.
If you have pudendal symptoms alone with no other abnormalities, tarlov cysts are less likely to be the problem but no rule hold 100%.
And yes they do tend to get progressively worse over time, but that is in the long term: I had significant long term remission after PT, and it sounds like you have changed your lifestyle significantly (no sitting, etc).
Objective viewing of tarlov cyst imagery by a Physician who works in this field can tell you if you are experienceing significant nerve root compression from the cysts. The Tarlov Cyst Disease Foundation website gives a full listing of Physicians working in the field, but I have my reservations about a few of them so I am not comfortable posting their info or telling you to go to whomever is closest. My surgeon, Dr. Feigenbaum, is the only one of the doctors that I personally trusted and so I will link to his info. While you can "jump the line" with an office visit, as you are getting better right now this seems unnecessary: Dr. F. gives free phone consults to patients who send him a full sacral MRI and medical records. It takes a long time (for me 6 months), because he only does the free chart reviews and phone consults at the rate of about 3 patients per week. But, it is a hassle free way to get a medical opinion in answer to your question. Here's Dr. F.'s website which explains how to access a phone consult: http://frankfeigenbaum.com/
I hope of course that you continue to improve!

Thank you for sharing your report, Laura.
Do you have lower extremity pain (legs/feet)?
Is your sacrum tender to touch?
Do you have symtoms of or have you been treated for SIJD?
I'm currently awaiting a phone consult with Dr. Feigenbaum for bilateral TC's at S3. I also have bilateral facet joint arthopathy, with fracture, from L3 - S1.
Kind regards,
Karyn

Ouch, Karyn, I didn't even know about the fracture, so sorry
Another thing I forgot to mention about lower extremity neuro issues you may be unaware of: When I was still out there without being properly diagnosed, I had an exam from a neurologist who said my ankle reflexes were absent. Testing of lower extremity reflexes should be done in addition to strength and sensation.
I did know subjectively that I had lower extremity involvement because i developed neuropathy in my toes before pudendal (and sciatica in the very late stages before surgery); but when I got neuroconductive studies done the report showed extensive motor abnormalities and only minimal sensory abnormalities. So I do suggest that if you have any suspicion of tarlov cysts as a cause, you do not simply say, "I don't have leg pain so that doesn't sound like me". Get your lower extremity motor nerves checked out thoroughly.

HerMajesty wrote:Ouch, Karyn, I didn't even know about the fracture, so sorry

Thank you for your compassion, HM. Honestly, with everything I've been through and still have going on, I'm just like ... whatever!!!!!
A Physiatrist sent me to get fitted for a custom back brace this past summer to try to stablize the fractures. Needless to say, I couldn't tolerate the compression to the sacrum, hips and lower abdomen. So, that was that.
I agree with you about having the lower extremity reflexes tested. Did you have yours done via EMG or manual? Interestingly enough - I had an EMG performed by a neurologist, who did both nerve conductivity and muscle response. They came back normal. However, manual testing of motor response was absent (ankles & knees). Also, manual percussion to the tarsal tunnel and lateral calves just below the knees produced a positive tinels sign. There's a note at the bottom of my EMG report stating "Bilateral H-reflexes had normal latancies when recorded (likely due to technical difficulties)." I only saw this neurologist twice and didn't get the record until after the fact; so I wasn't able to question him about it. This is the same neurologist who told me "he doesn't believe in PNE or ilioinguinal neuralgia".

Is right! If the EMG doesn't cost a lot out of pocket, it might be worth having it re-done to rule out "technical difficulties". I 1st was told I had absent reflexes by manual exam in 2009; and around the same time, I had an emg of the lower extremities and was told nothing further than that I had a "very mild neuropathy", and not given a report. in late 2011 or early 2012 I got another EMG of the lower extremities to use in my insurance appeal, and that was the one that had markedly abnormal results, with greater abnormalities in motor than in sensory. But, I first began to experience sensory neuropathy in my toes shortly after childbirth in 2004! So, it seems to me that marked abnormalities in EMG happen rather late in the disease process.

HerMajesty wrote:Hi Laura,
Having had tarlov cyst surgery myself I still can't say precisely if tarlov cysts can be the cause of your PN because since they cause compression all the way up at the nerve roots, they can cause any kind of pathology below and two patients will not necessarily have the same symptoms.
A typical but not universal hint that tarlov cysts is the cause is abnormal conduction in the feet and/or legs. This might be any or all of the following: foot and/or leg pain, lower extremity weakness, and loss of sensation. Weakness and loss of sensation might not be readily apparent without a neuro exam or neuroconductive studies; I did eventually realize my leg muscles were weak because I deteriorated to the point where I could not take a walk without injuring a knee or ankle; but before that it wasn't really obvious. I didn't notice the loss of sensation either until the neurologist demonstrated it to me with the pin prick test, which you can try at home - gently prod various areas of the leg and foot with the tip of a pin which should of course feel "sharp"; with loss of sensation it will feel "dull". It was dull to me over the tops of my feet and my calves.
A near universal symptom of tarlov cyst disease is sacral pain or tenderness. I did not have any sacral pain which is unusual, but when I actually checked I did have tenderness, meaning when I pushed over the sacrum with a finger it was sore.
If you have pudendal symptoms alone with no other abnormalities, tarlov cysts are less likely to be the problem but no rule hold 100%.
And yes they do tend to get progressively worse over time, but that is in the long term: I had significant long term remission after PT, and it sounds like you have changed your lifestyle significantly (no sitting, etc).
Objective viewing of tarlov cyst imagery by a Physician who works in this field can tell you if you are experienceing significant nerve root compression from the cysts. The Tarlov Cyst Disease Foundation website gives a full listing of Physicians working in the field, but I have my reservations about a few of them so I am not comfortable posting their info or telling you to go to whomever is closest. My surgeon, Dr. Feigenbaum, is the only one of the doctors that I personally trusted and so I will link to his info. While you can "jump the line" with an office visit, as you are getting better right now this seems unnecessary: Dr. F. gives free phone consults to patients who send him a full sacral MRI and medical records. It takes a long time (for me 6 months), because he only does the free chart reviews and phone consults at the rate of about 3 patients per week. But, it is a hassle free way to get a medical opinion in answer to your question. Here's Dr. F.'s website which explains how to access a phone consult: http://frankfeigenbaum.com/
I hope of course that you continue to improve!

Have you tried walking backwards and sideways, if that is possible for you? This exercise, if done only for a short while every day can make a big difference to your balance (which is important for weakened and numb legs) and to your knees and ankles.

srinmav wrote: Have you tried walking backwards and sideways, if that is possible for you? This exercise, if done only for a short while every day can make a big difference to your balance (which is important for weakened and numb legs) and to your knees and ankles.

I was capable of walking sideways and backwards pre-surgery but I did not try to do it regularly as a balance excercise. Instead I got the surgery I needed 8 months ago and my legs are just fine now; I am back to walking 2 miles daily without injury. The sensory neuropathies in the pudendal and toes are not 100% yet and my bladder function is still off, but the average time to get full benefit from tarlov cyst surgery is 2 to 3 years, so I am confident. I agree various excercises such as those done in PT and yoga can benefit some people in the short term, but in the long term if a nerve is compressed it needs to be decompressed, or deterioration will continue.

Sorry, I haven't had a chance to respond.

Thanks HM and Karyn for all the good information. I did the pin prick test on top of feet, ankles and calves and seemed ok. Actually, I had hubby stick me. I told him I would not call the cops and have him arrested for "domestic violence" . I did have some thigh tingling occasionally last year in my upper front thigh on my pn side and just figured it was nerve cross talk. I don't seem to have lower extremity problems and after last year of much inactivity I've been on my treadmill and doing quite good for someone out of shape and old with no leg weakness or problems. I'm almost up to a 20 minute mile. I will continue to monitor the situation of Tarlov cysts.

HM or Karyn, can my own doctor do a ankle and lower leg reflex test? I mean, is it the same test where they hit your knee with that rubber hammer thingy and you leg flexes out?

HM, after looking at Dr Feigenbaum's website I wouldn't consider anyone else to do the surgery if I needed it done.

Karyn So sorry to hear of all your problems...you're are so sweet and such a caring, nice, person; I wish you much healing! What is bilateral facet joint arthopathy? Never mind, Karyn I don't want to know. I rather live in ignorance. They say ignorance is bliss, and I'm ready for some bliss! I suppose everyone on this forum wants some bliss for a change. Seriously Karyn, the reason I don't have any info on this condition is because I was given the MRI report but haven't had a chance to talk to my Dr. as I have an appointment on the 31st of this month. I guess I'll have my bliss bubble broken then.

Blessings and healing to all on this forum. I'm not giving up hope that one day I will be able to sit again! Boy, did I use to take sitting for granted!

Yes, the reflex tests are the simple ones that your primary physician should be able to do.
Not everyone does have lower extremity issues with tarlov cysts; I think sacral pain or tenderness is the closest thing there is to a universal symptom, and as I had no sacral pain I didn't even think about my sacrum until it was brought up...then I realized that it was indeed tender if I pushed on it. I don't think there are really universal symptoms for any pathology: That is, in my experience, a group of people with a single objective pathological finding are all likely to have a somewhat different set of subjective symptoms.
The important thing is to thoroughly investigate all possible causes of your symptoms and try to figure out which one(s) are really causes and which are not significant. I think the commbination of PN and sacral tarlov cysts, in itself, makes the tarlov cysts highly suspicious.
But, I tend to be biased because surgical recovery has been going so well for me. It can be a very long, difficult recovery and there are surgical failures / people worse off after surgery just like pudendal decompression surgery. Whereas, my story is that my tarlov cysts were found on MRN and I was advised by several physicians to disregard them; but instead I pursued the issue, had the surgery, a very easy recovery, and have been improving steadily ever since. This is not typical, and it does make me biased, and I just want to make that clear because I admit it gives me the attitude, "If you have tarlov cysts they must be the problem and you should go have them fixed already". Take what I say with a grain of salt ...but do keep those tarlov cysts in mind as a possible source of your symptoms.