3-Tesla MRN at Johns Hopkins

[Anna]

Hello all,

I am currently consulting Dr. Marvel in Annapolis for my problems (see signature for details). He advised an MRN and guided pudendal and femoral cutaneous nerve blocks.

The 3T MRN showed "disc desiccation at L4-L5 and L5-S1 without significant spinal canal narrowing. Mild neural foraminal stenosis, moderate at L5-S1 on the right" and "mildly increased signal in the bilateral pudendal nerves, slightly greater on the left, suggestive of mild neuropathy. No evidence of mass effect, displacement, or thickening." Also, under the L5-S1 section, the report says "8 mm left Tarlov cyst 2.8 x 2.1 cm right renal cyst." Finally, there's a 4 mm left Bartholin duct cyst.

The blocks induced mild numbness but very little immediate pain relief, if any. However, the pain was possibly reduced in the succeeding 2 weeks (perhaps as the steroids kicked in) although I'm not sure as my pain has always gone up and down.

Because the blocks were inconclusive Dr. Marvel referred me to a back specialist to see if the pudendal and leg pain is originating further up the nerves. The back doctor in turn suggested either an epidural or a nerve root block, which I have doubts about. He said he didn't "believe" in Tarlov cysts.

I don't have the greatest confidence in Dr Marvel either. He initially missed a painful area inside when examining me, for which I'm now trying PT again. This may or may not be a trigger point (feels more like the therapist is actually pressing on a nerve).

My questions relate to the MRN report and what to do next.

1. If the pudendal nerve showed evidence of neuropathy, surely that's where the problem is, not further up at the root? But what's causing it? And is the pudendal nerve problem now having a knock-on effect causing the leg pain?

2. The report states "no evidence of mass effect, displacement, or thickening" of the pudendal nerve. Does this mean there's no entrapment?

3. Is a repeat MRN with Dr Hollis in new York likely to throw up any better analysis? Johns Hopkins has a very good reputation. I note that Hollis appears to be diagnosing entrapment, although according to Stephanie Prendergast there is no way of actually seeing this on a scan.

4. Is the spinal wear and tear noted in the report normal for my age (58)?

I welcome any of the very expert opinions I see on this site. It is outrageous that we have to consult each other on this horrible condition and cannot find many true experts.

With thanks.

[Violet M]

Anna, have you read HerMajesty's posts on tarlov cysts? There are docs who do believe in them so you probably want to get a second opinion. Did it say what level the cyst is at? I could be wrong but an 8 mm cysts seems like it could be significant depending on where it's located.

MRN's aren't 100% conclusive on showing a neuropathy but unfortunately nothing is, so you are going to have to follow your instincts.

Violet

[helenlegs 11]

Hi Anna,
Welcome to Hope
I agree with your last sentence. . . but at least you do get good advice here Violet's message to chase up on the Tarlov cyst pathology for instance. As she mentioned Her Majesty discovered that this same problem, now sorted, was the cause of much of her pelvic pain. There is a particular doctor that she consulted with who does recognise this as you will see from her posts.
Not to say this HAS to be the reason in your case, I am not sure about the other cysts at all, I would say they need to be taken into account too?? but nothing else from the scan explained why you are having the problems you are experiencing. I don't think that Stephanie is correct saying that nothing can be seen from these scans but they are not always judged as the best tool for diagnosis but may be helpful in conjunction with a knowledgeable clinical examination. However a cyst will never be spotted on examination. I would say that the pudendal nerve 'signal intensity' reported on the scan is significant too, especially as it concurs with your pain. You do have the problem bilaterally?
Any spinal details reported, don't explain the problems as there is no account of any nerve impingement.
If the pain that you experience during physiotherapy is more acute than tense/spasmed muscle pain, if it 'travels' even slightly, burns or ' zaps' it could well be the nerve btw. I know I can locate my pudendal nerve but then I don't have any problem with tight pelvic floor muscles so perhaps it's easier to identify. Nerve pain is quite specific with manipulation however.
If the therapist can identify areas of pelvic floor tension this could explain your problem too, however this could have occurred as a secondary problem to the 'actual' reason but pelvic physiotherapy is definitely worth pursuing if tension has been found.
Take care,
Helen

[Karyn]

Hi Anna,
Welcome to HOPE! I agree with Violet and Helen - please explore the tarlov cysts prior to embarking on any further treatments. I'm hoping HM will catch this post, but in the mean time, here are some helpful links:

http://www.tarlovcystfoundation.org/tar ... tion0.aspx
http://frankfeigenbaum.com/

You may also try sending Hermajesty a PM. She's a very nice woman and a great source of information.

Best,
Karyn

[HerMajesty]

Hi, I just did notice this post; this thread probably contains most of the useful info I have to offer, although we went off on lots of tangents so you would have to sift through to get it all: http://www.pudendalhope.info/forum/view ... arlov+cyst . I had bilateral symptoms, right worse than left, and my smaller cyst on the left was 8mm. I am not sure a single unilateral cyst of that size could cause a bilateral pain syndrome, but as stated in the thread, Dr. Feigenbaum can take a look at the images for free by mail to let you know if the cyst looks problematic. Also I think it's worth noting that every single person I have met so far who has had tarlov cysts, has also had sacroiliac joint dysfunction (SIJD) - I am beginning to suspect that both might be related to a 3rd factor such as a connective tissue disorder. SIJD is a hands-on Physical Therapy diagnosis and will not show up on an imaging study. If you haven't been checked for it, I would recommend it, because SIJD alone can cause significant pelvic pain. The tarlov cyst is a "hint' to me that SIJD might be present as well; whereas the size of the tarlov cyst and the fact that it is unilateral, causes me to suspect that it would not be the sole and primary cause of pain...a little hard to conjecture though since I'm not sure what the exact nature of your pain is.
Could the painful area you are describing (the one you say Dr. Marvel missed) be the bartholin's cyst? Have you looked at online images of those to see what they look like and where they are located? It seems like a bartholin's cyst could be mistaken for an internal trigger point, and it's probably not a good idea to manipulate it as if it were a trigger point.

[Karyn]

Hi HM! Glad you noticed this and responded.

Also I think it's worth noting that every single person I have met so far who has had tarlov cysts, has also had sacroiliac joint dysfunction (SIJD)

I did speak with Reta, President of the TCD Foundation about this very subject and she agreed there is a large correlation of SIJD and TC's. However, the SIJ is imagable via standard MRI and CT scan. My findings were bilateral ankylosing of the SIJ, bone spurs and synovial cysts measuring 7 mm in diameter.
The contact info for doctors who acknowledge TC's at Johns Hopkins is as follows:

Kathuria, Sudhir, M.D. (Interventional Neuroradiologist)
Johns Hopkins Hospital
Department of Interventional Neuroradiology
1800 Orleans Street, Bloomberg 7218
Baltimore, MD 21287
410-955-8525
(Office)
410-614-8238
(Fax)


Long, Donlin ,M.D. (Neurosurgeon)
Joppa Green II 2328 West Joppa Road
Suite 103
Lutherville Maryland 21093
Phone: 410-828-7513
Link to Dr. Long's website: http://www.donlinlong.com/


Note: Dr. Long retired from clinical practice at Johns Hopkins Medical Institute effective July 1, 2010 and joined a medical practice in Lutherville MD. His new practice will focus on spinal diseases, which are painful, including patients with perineural cysts. He will not be actively involved with surgery for Tarlov cysts but will refer surgical patients to active surgeons.

Although Tarlov cyst surgery is no longer being performed at Johns Hopkins Hospital, the aspiration & fibrin glue injection procedure is still being performed at JHH by Dr. Sudhir Kathuria, Interventional Neuroradiologist (contact information above)

Also, while speaking with Reta, I thought she told me the aspiration & fibrin glue procedure was being abandoned due to complications and lack of effectiveness. I may have misunderstood her, so it might be worth your while to see what your options are, if you decide to contact Johns Hopkins.

Best,
Karyn

[HerMajesty]

A couple of things to piggyback off karyn's last post -

Last I heard, aspiration and fibrin gluing had been abandoned by ALL physicians, internationally, except ONE, and Reta said that one is not providing any data to show his results...and if i recall he might be located somewhere in that same geographic area (as Johns Hopkins and Dr. Marvel)... So, BEWARE! There have been some serious complications from this procedure; and even in the absence of serious complications it is usually a temporary fix (pain tends to reappear in about 2 years), which will greatly complicate the later permanent fix of surgery because the fibrin glue mucks up the surgical site. I would strongly advise you to avoid it.

2nd note - Bone spurs, arthritic changes, etc. in the SIJ are notable on imaging; but that is the (unfortunately more complicated) minority of SIJ dysfunction. Most SIJ dysfunction involves a joint that is functionally "stuck" or hypomobile, often paired with other joints which compensate through excessive motion (hypermobile). This is due to subtle changes in the articular position of a joint, almost never dramatic enough to shown on imaging studies. It is a problem of movement, not of anatomy, and hence cannot be picked up on a still image. Karyn, your SIJD showed because it was a problem of anatomy; but mine was a problem of movement which is more expected when the joints can be displaced too easily due to connective tissue laxity. The type of SIJD which does not show up as an anatomical change, is the type which can reversed with manipulation and targeted excercises.

[janetm2]

I think you have been given thebest advice so far but thought I would give another possible idea which may or may not be applicable and some of my local Maryland experiences. I had SI joint injections just this past month from Dr Matsunaga at the Comprehensive Pain Center next to Howard County General Hospital 2 rounds that really helped. I had been getting manipulations and exercises (newly added aqua therapy, along with chiropractic, regular PT from Her Health and acupuncture). I had surgery from Dr Marvel almost 2 years ago and from history and nerve blocks and PT input (did not show on MRN from Johns Hopkins) PNE was determined and verified at surgery. If you have any questions I would be glad to expand. Also I believe the acupunturist has finally found a way to clear out the remaining rectal pain so I will be looking into moving off meds.
Janet

[Anna]

Many, many thanks for these comprehensive replies. I see more sense and expertise on this site than I have done in over 21 years of pain and inappropriate treatments.

There is a lot to consider in these replies and I'm not sure where to start. One avenue, however, will definitely be to investigate the role, if any, of the small Tarlov cyst discovered by the MRN. I should be able to do this here in Baltimore with Dr Kathuria. I have now read HerMajesty's account and found it very thought-provoking. I'm not sure how much effect such a tiny Tarlov cyst as mine could be having, but of course I need to check with an expert. I will also look into the possibility of SIJD - the connection there is pretty interesting.

Meanwhile I intend to talk to my PT about whether she is working on a trigger point, a nerve, or a Bartholin's cyst. (It does feel more like nerve pain - electric and burning, and seeming to kick off pain in other directions.) It's all very difficult to disentangle so I certainly sympathise with PT practitioners trying to sort it out. Not sure I sympathise with Dr Marvel though - surely we are entitled to expect a doctor specialising in this field to be able to know his way around the topography?

Again, my thanks to all. I will post up any more progress. I've also made myself a promise to report back if and when I get a cure - success stories are vital.

Anna.

[HerMajesty]

Dr, Kathuria is in fact the one doc still doing the aspiration and fibrin gluing, unless he has quit in the past year. Not all docs who work on tarlov cysts are equal, which is why I travelled from Nevada to Kansas for my surgery. If you fill in the contact form on the Tarlov Cyst Disease Foundation website, you will almost certainly get a personal call promptly from Reta the President of the TC Disease Foundation, and she can answer any questions - But FYI what she told me to do, was to send a copy of my MRI to the Tarlov doc closest to me geographically (who happened to be Dr. Schrot at U.C. Davis), and to send a 2nd copy to Dr. feigenbaum, who works out of Kansas City and Dallas. I wasted 6 months of my life by ignoring her advice and only sending one to Dr. Schrot, because Kansas seemed kinda far. 6 months later when I got the consult, he told me he would like a urogynecologist at U.C. Davis to look at my pelvic floor, and would like to do a spinal tap to see if lowering the CSF pressure in my tarlov cysts made me feel better. If the spinal tap helped, he wanted to install a permanent shunt in my head. EEEK! Hence another 6 month wait to talk to Dr. Feigenbaum and get a sane assessment and treatment plan. I strongly suggest that you learn from my mistake.