newbie

[lilima]

Hi all,

MRI showed that I have small shwannoma on nerve roots L3-L4. But I have all the symptoms of pudendal neuralgia and I am constantly on Tramadol for pain. Does anyone else here have had any issues with schwannoma in lumbar/sacral spine but somehow related to pudendal nerve and/or pain?

Many thanks, Marina

[lilima]

Ooops,I have just realised that this is the part of the forum where I should have introduced myself. Sorry. So here it is.

So, I am a 53 year old. I've had the pain in the recto-vaginal area for almost 10 years now. I was diagnosed with endometriosis in 2005, had a couple of laparoscopies during which endometriosis was 'scraped off'. But pain was just not going away. Natural progesterone helped a bit though. In 2011 MRI showed that I had adenomyosis. Adenomyosis makes uterus bulky and heavy, so I decided to have hysterectomy. Logic was that the weight of uterus might be pressing 'something' and if the uterus is removed the pain will go away. So, in March 2011 I had a hysterectomy which was a success. The pain went away!

13 months later the pain came back, exactly same area, recto-vaginal. So, I am back to square one. In the mean time I learned about the pudendal nerve on this wonderful site, and I realised that I have all the symptoms of pudendal neuralgia. After visiting a physio knowledgable in PN he agreed with me that I have all the symptoms of PN.

I asked my doctor for a refferal for MRI which I have just done. The only thing they could see is schwannoma on the nerve roots L3-L4. Schwannoma is (usually) a benigh tumour of the nerve. It can be removed by surgery.

My current theory is: Endometriosis caused nerve (not sure which one yet) irritation which caused pain. Bulky uterus also contributed to nerve pressure and pain. Once uterus had been removed the pressure was gone. And being 53 I probably don't suffer from endometriosis anyway.

But I am not sure what is going on now.

Does this schwannoma on L3-L4 somehow affects pudendal nerve, or some other sacral nerves?
Is it possible to have a problem on L3-L4 and that is radiated down to low pelvis area?
Has anybody else experienced something similar?

Many thanks in advance for any comments, cheerio, Marina

[helenlegs 11]

Welcome Marina,
I haven't ever heard of anyone post that exact problem although I do know that a few people have wondered if there is any correlation between spinal issues and pelvic pain.
The only thing that would throw any straight pudendal and L3/L4 link out would be that the pudendal nerve originates from S2-S4 so a bit further down.
There could be a couple of problems perhaps? Unfortunately there aren't any absolutes in pelvic imaging (although it is advancing all of the time) to show pelvic problems so any spinal imagery that can show a problem is often used as the diagnosis. I have been in that situation, but have got an accurate diagnosis that makes much more sense now
You mentioned tramadol which can help with straight forward pain (I take it too) but there are other medications that may better serve typical nerve pain.
Click on the home page in red above for details.
Have you had any pelvic physio that may give you any indication of muscle problems within the pelvis? That is always something to consider again if you take a look at the home pages there is a list of physio's that may be able to help you.
I'm sure that something/one here will help you either rule the pudendal nerve problem in or out of your overall symptoms so that you can target whatever treatment would be beneficial for you.
Glad you have found us and hope we can help

OOPs just saw you have added a bit extra info but will still post what I have here so far
Take care,
Helen

[Violet M]

Hi Marina and welcome to the forum. As I read your post I as thinking the same thing as Helen -- that the pudendal nerve arises out of S2-4 which is lower down than where your schwannoma is. Most traditional MRI's do not show enough detail to determine if there is a problem with the peripheral pudendal nerve. Some of the newer MRI's with 3T capability and special software will show scarring or scar tissue that might be affecting the nerve and I have read MRN reports that show inflammation of the nerve itself. But there are only a few places where you can have the MRN.

It's been such a long ordeal for you it must have been very disappointing for the pain to return. Some people have reported they were initially better after a surgery only to have the pain return. Speculation on some of the possible reasons -- scar tissue formation, re-injuring a nerve somehow, aging of the musculoskeletal system (ligaments, etc.) with resulting misalignment or sagging of pelvic structures. I'm sure there must be additional possible reasons.

Violet

[lightmail]

Violet. Would you get a mrn if it was nearby or would you travel from seattle and all that includes, all the way across the country to get one. Do you trust them I guess I am trying to ask? Thanks for your time....Robert

[Violet M]

Hi Robert. If I understand correctly you are saying that you have to decide between getting an MRN nearby in Seattle or traveling to NYC for the Potter MRI - is that right?

There's been a lot of discussion about the 3T MRI vs. the MRN and based on what I've heard from other patients, if I could have the MRN locally and insurance would pay for it I would just go for that rather than fly clear across the country. The reality is that neither one are 100% accurate. If your symptoms are consistent with PNE and you've tried all of the conservative treatments I guess the question you have to ask yourself is whether or not the results of the MRI/MRN is going to change your decision on what treatment you will pursue next. The diagnosis involves so much more than the MRI/MRN.

Take care,

Violet

[lilima]

Hi all, thank you for your comments.

I am aware that the pudendal nerve originates from the sacral region. But I was wandering if it is possible that L3-L4 nerve, as it goes doen the pelvis, is close enough to pudendal nerve, so is it possible that L3L4 nerve somehow irritates the pudendal nerve?

I gues i am trying to find out if i have one or two problems ie whether 'fixing' L3-L4 would get rid of the pudendal nerve pain or i have two problems, nerve schwannoma/irritation on L3L4 AND a pudendal nerve irritation as well.

Many thanks again, Marina.

[Violet M]

Hi Marina,

You can look in google under "what is innervated by L3, L4" or in google images you can look for "L3 L4 dermatones". You will probably discover they go to the genitofemoral and ilioinguinal nerves and innervate areas close to where the pudendal innervates but not the rectal area. So, when your PT presses on the pudendal nerve vaginally does that elicit pain? That is one of the diagnostic tools used to determine if there is a possible entrapment of the PN. Have you tried any nerve blocks to try to narrow this down yet?

Violet

[lightmail]

Thank you Violet. I have a place about 60 miles from me that can do the mrn...One problem though is that I have severe tinnitus and hyperacusis. The noise would be so loud for an hour or so that i could totaly destroy my auditory system even with all the ear protection I could find.(sound goes thrue the bones of my head to ears). This is so frustrating. No rectum for some tests and no internal pt. Tests that would make hearing worse. Fun stuff...Violet do you still think ultrasound is as good as ct guided nerve blocks, I think this is my next logical step.
thanks for your replies....Robert

[Violet M]

.Violet do you still think ultrasound is as good as ct guided nerve blocks...

Personally I would pick ultrasound over CT guidance because CT guidance requires some radiation -- more than an x-ray/fluoroscopy. Ultrasound doesn't require any x-ray-type radiation.

http://www.mayoclinic.com/health/ct-sca ... TION=risks
http://tinyurl.com/6sehdx8

"Radiation exposure
During a CT scan, you're briefly exposed to much more radiation than you would be during a plain X-ray. This radiation from imaging tests has a very small potential to increase your risk of cancer."