Help! PN getting worse and don't know what to do next.

[Barb]

Thanks so much Violet. It is nice to hear from someone who has been through the surgery. I am definitely not going to jump into surgery. It has only been a little over a year since the surgery that removed the mesh. I agree that other opinions would be wise. It is hard, as you know, to find doctors who even know about PN and flying is so hard because of the sitting issue, but I know there is help out there. It is just being patient and finding the right meds to help with the pain.

This site is invaluable and I appreciate all the info!

Take care

[HerMajesty]

I had the same issue with the hypermobile SI and trying everything...it was finally corrected by a different PT Manual Therapy method in which the HYPOmobile (stuck) joints in the lumbopelvic / hip complex are located and mobility is restored. This reflexively corrects the hypermobilities, which are really just compensations. The lax S-T ligament is also not likely to be a primary problem: It will become lax when the pelvic joints are stuck in a pattern which decreases the distance between the attachment points of the ligament. Not sure if your pain is caused primarily by the S-I since the mesh issue suggests scarring; but it you want the S-I fixed, locate a PT who chases hypomobilities, not hypermobilities.
Personally having the SI corrected helped me but did not fix me because i had dual sources of pathology. I consider it important though, especially as a 1st step because unlike most other interventions it is not invasive, and conservative care should be tried first to see what else if anything is necessary.

[Barb]

Thanks! I will look into that ........sounds feasible. I also have spondylolisthesis at L5-S1 so I have to be really careful with manipulations in that area.

How was your Tarlov cysts diagnosed? There was an interesting statement on my MRI that said I had a nonagressive lesion at the C1 segment? (images were only done on my pelvis) that was very likely a hemangioma??? Don't know what this means since I don't have anyone to explain my MRI. I wish Dr. Potter still explained it to patients.

Now that I know my diagnosis, I am determined to find answers and keep fighting for healing

[HerMajesty]

Tarlov cysts can be seen on a pelvic MRI; as far as I know from other Dr. Potter patients she does document them (some radiologists don't), and refers to them as perineural cysts, not tarlov ( they also go by a 3rd name, meningeal cysts). Do you mean S1, nor C1? C1 is your neck. One or 2 other patients have mentioned sacral hemangiomas to me; and my response is that while i don't have any real knowledge of sacral hemangiomas, depending on size I assume they have some potential to do the same thing that tarlov cysts do, which is mechanically compress the nerve roots within the sacral canal. The sacral canal is a very small space and if you have anything in there approaching or exceeding 1cm in size, I would say it's worth looking into further.

[Barb]

Yes, she said C1. That's why I thought it was so strange. Maybe she meant S1. My next step is getting a knowledgeable doctor to read my MRI and go through the images with me. I purchased the DVD of the images while I was in New York. This really is a jigsaw puzzle isn't it?

Thanks for your help.