How long does one try physical therapy?

[pizzarios]

So I had the MRI

Showed diagnosis of Osteitis Pubis in addition to Sacral Hemangioma at the 4th and 5th segments.

1) can osteitis pubis account for all the typical PN type symptoms that I'm having (apart from the pubic/groin pain)??

2) can a non tumorous hemangioma account for nerve impingement??

I am dumbfounded. My pt is stumped and I'm getting the impression she may send me on my way real soon here.. Current pelvic PT is not effective.

[Faith]

One of my many MRIs said that I had a sacral hemangioma (but then it had a question mark after it -so I guess they don't know?). When you research this most of the time they say it's nothing, but talk to Her Majesty about it....she's had surgery for tarlov cysts and it has helped her PN pain. She is very knowledegable and has done a lot of research about the cysts (not that that is what you have, but maybe it will help you process things). As for the osteitis pubis, I'm not sure...but it's possible that is causing biomechanical issues that is putting tension on the nerve and causing PN. I think a lot of PNers have biomechanical causes to their pain. Fixing it though is not easy unfortunately.

[Karyn]

Hi Pizz,

I ask her what she thinks is wrong with me at every single sessions. She always just pauses and says that she thinks there are many things at play,

Did you ever get a diagnostic evaluation from the PT? Sacral torsion? SIJD? Anything?

I started to have debilitating lower back/hip pain in the place of the nerve pain. It was more tolerable than the burning/stabbing sensations in my vulva & urethra,

I'm concerned about the "Sacral Hemangioma". A hemangioma is essentially a bunch of blood vessels that form a tumor. Do you have any visible edema on your sacrum? Do you have a PCP you can discuss this with for clarification and to confirm/rule out Tarlov Cysts? Osteitis Pubis is inflammation of the pubic symphysis - the joint holds the two sides of the pelvis together in the front and are connected at the sacrum in the back of the pelvis. Do you have groin pain or pain in the front of the pelvis?

I think a lot of PNers have biomechanical causes to their pain. Fixing it though is not easy unfortunately.

I agree, Faith. With the exception of pelvic surgeries and autoimmune disorders, our common denominator is THE SACRUM. Unfortunately, any pathology associated with it is considered "uncommon or rare". There's an abundance of spinal neurosurgeons who will address the cervical, thorasic and lumbar regions, but I'm finding the buck stops at the sacrum. I recently asked a physiatrist why this was, and he responded by saying, "because the nerves that come out of that area really don't do anything".

[helenlegs 11]

There's an abundance of spinal neurosurgeons who will address the cervical, thorasic and lumbar regions, but I'm finding the buck stops at the sacrum. I recently asked a physiatrist why this was, and he responded by saying, "because the nerves that come out of that area really don't do anything".

WOAH! I would like to see them manage without them. What a mess there would be everywhere!!

Perhaps THIS is one of the reasons we are not taken quite so seriously as we should be. If the cauda equina is encroached upon at spine level (well has to be hasn't it as that's where it is) the nerves in the cauda equina (that then branch off in pairs) can be compromised and cause bladder and bowel problems which IS regarded as a serious problem (although I have also read that this problem is not usually accompanied by pain??).
Maybe because the scrum is fixed and there are no discs below S1/L5 that can cause a problem to nerve roots there, they don't see the sacral area as a potential problem, unless there is something seen on imaging (tumour or cyst)
Even then we know how difficult it is to get tarlov cysts recognised as a potential painful problem.
That is quite astonishing Karyn.

[Faith]

Interesting you metnioned swelling of the sacrum, Karyn. Almost every massage therapist I see says my sacrum looks swollen. But no Dr. or PT has ever been able to give me a reason for it. I always figured it was just due to the inflammation of the PN or the SIJD. I went back and looked at my lumbar MRI and it said under "sagittal images" "Sacral hemangiomata noted" (which apparently is the plural of hemangioma). But under the impression they didn't even mention it and my doctor who ordered the MRI never mentioned it. Don't even know where to begin trying to look into this. I get so tired of constantly having to be my own advocate and doctor. And the frustrating thing is I continue to search and try so many things and get absolutely NO WHERE. A lot of time I go to the trouble of investigating something and everything is normal. So it's hard to know when to pursue something and when to not.

[pizzarios]

I can do nothing but read this forum and cry.
I am lost. No idea what treatment direction to go. Uro wants to rule out diverticula.

The burning pain is out of control this past three weeks, sice having to increase sitting. I am so depressed. Just thinking about all the money and hoops I'll need to jump through just to *maybe* get some relief is too much to deal with right now .

The last 4 months of my life have been a nightmare. I cannot envision th rest of it being the same without having this total emotional collapse.

[helenlegs 11]

Hi there pizzarios,
Try and keep positive, please. Easy to say, I know , harder to do.
You do have someone who seems to be actively taking your problem on board and is trying to rule problems out. Unfortunately, this does seem to be the usual course of action,and it does no harm, course of course, ruling things out. Although it can be time and cash consuming as you mentioned.
The only thing that I would add is that some experts can get stuck within their own speciality and go too far down that 'ruling out' road unnecessarily, when there may be symptoms that are obviously pelvic nerve related to those who are PN aware.
What symptoms do you have that could lead the Uro to want to rule diverticula out? How much will this cost to rule out too?? I know you are not the medical expert and in a painful situation we just expect the medical profession, 'the experts', to know, or at least be able to send us to someone who does. . . . Unfortunately I don't know anything much about diverticula, could it cause nerve pain?
I think the fact that some physio did have a positive result is telling. It is just a shame that the PT cannot give you better feedback but often the pelvic problem can be SO complicated.
If you have a high suspicion that your problems are nerve related or nerve/muscle related is there anyone on the PN Doctor list that could evaluate you so that you can actually get hopefully good, or at least better answers.
Best
Helen

[Karyn]

Hi Pizz,
Helen gave you some good advice - please try to keep positive! I know things seem overwhelming and hopeless right now but it appears you are truly at the point where you need to see a PN Specialist. Is that possible for you? Regarding the diverticula ... I have that. Prior to PNE, I had no bowel/colon problems what so ever. One of my symptoms before surgery was that feeling of something stuck up my rectum. This was accompanied by violent electric shocks which were unrelenting. In between the shocks, I could feel my colon (?) vibrating and spasming. I no longer experience these sensations any more, but I do believe damage was done.

Maybe because the scrum is fixed and there are no discs below S1/L5 that can cause a problem to nerve roots there, they don't see the sacral area as a potential problem, unless there is something seen on imaging (tumour or cyst)
Even then we know how difficult it is to get tarlov cysts recognised as a potential painful problem.

Well, that seems to be the consensus in the medical community. But even if there are no "discs", the sacrum is still a point of origin for nerves. It is possible for pelvic and lower extremity neuropathies to occur if the sacrum is torqued. It IS supposed to be a fixed structure, so when it's deviated, the consequences can be very serious. Muscles, joints, tendons, ligaments will be effected, causing tears in the soft tissues, which leak synovial fluid, which eventually ossifies. Sacral torsion may also compress the nerves arising from this fixed structure. If left untreated, the prolonged compression may cause nerve entrapment. It can effect your hips, piriformis, sciatic nerve ....This article has been posted elsewhere on the site but I think it's worth reading again:
http://www.ijav.org/2011/ijav_2011_123-127.pdf
Faith - the sacral edema was one of the very first things Dr. Conway noticed when I saw him for my initial consult a couple of years ago. I've also had it noted by PT's who gave me the impression it was one of the most bizarre things they've ever seen. No explanations and then dismissed.

But under the impression they didn't even mention it and my doctor who ordered the MRI never mentioned it.

Same here. I've had (2) MRI's done which picked up bilateral perineural (Tarlov) Cysts at S3. In the body of my reports they're noted as "stable and incidental findings". Nothing under the impression. Hmmmm .... So, the neuropathic pain I have in my pelvis, legs and feet are just a coincidence?!??!?!
Anatomy of the Sacral Plexus:
http://emedicine.medscape.com/article/1899189-overview

I get so tired of constantly having to be my own advocate and doctor.

Me, too.

[helenlegs 11]

I get so tired of constantly having to be my own advocate and doctor.

Me, too.

Oh yes, I am SO weary of this, so weary. Especially when everyone tends to treat everything I say with such a huge amount of scepticism or utter disbelief.
I have a diagnosis by an expert, yet still get no where!
Absolutely sick of fighting the system.
Take care all,
Helen