Lumbosacral plexopathy diagnosis

[MelodyW]

Hi everyone,

My second EMG / NCS shows evidence of chronic left lumbosacral plexopathy and possible right lumbosacral plexopathy or L4-S1 polyneuropathy.

It seems to me that my issues would definitely be beyond just pudendal neuralgia. I also have bilateral SI joint dysfunction. The left SI joint is so twisted that it physically feels like it is twisted up and back, twisting and crunching muscles and nerves in the process.

My question is: Since my case is a polyneuropathy involving my whole pelvis and really my whole body I believe (my spine feels like it's twisted in a spiral when I lie on my back along with both SI joints feeling twisted), who would help me now?

I don't think my case is something surgery can treat and I am nearly bedbound due to loss of function.

I'm pretty sure I was partially born with spinal and pelvic malalignment because I am hypermobile and have scoliosis. I also noticed from a young age that both SI joints looked "off" somehow but couldn't pinpoint why. Unfortunately, I thought since I had no pain at the time that maybe it wasn't a problem. *sigh*

I'm not sure where to start anymore. If anyone has any suggestions, feel free to let me know.

[stephanies]

Hi Melody,

Have you had an evaluation with a neurosurgeon? If not, sometimes one very familiar with the issues you mention might be able to make some suggestions to help you even if surgery isn’t the best option. I believe that issues with the spine are contributing to my PN.

Stephanies

[MelodyW]

Hi Stephanie,

That's true, thanks for your input.

That makes sense that because surgeons like Hibner, Conway, and Possover are familiar with related diagnoses, it could still be helpful to consult with one or more of them. (Although I've just seen the posts about his departure from his former practice in Arizona...hadn't heard about that until now but he was closest to me - I guess it would be Castellanos then if I were to stay "close" to my home state).

I haven't met with a neurosurgeon yet, although strangely my sports med doctor claimed "my spine isn't involved" even after the abnormal EMG / NCS results (I know it is, but unfortunately sifting through docs to find someone who believes you is the norm as we all know).

I think this is partly why no one has referred me to a neurosurgeon here although I'm guessing it's better to see one of the out-of-state listed ones if possible. Maybe I will talk to my pain management doctor about it at my next appointment. Do you think an\ good orthopedic surgeon could be helpful too?

My sports med doctor did mention Conway and Possover but for abdominal nerves when I asked her about possible surgeons to see.

I'm sorry to hear about your additional spine issues along with PN and hope your day has been as calm as it can be.

[stephanies]

Hi Melody,

I have not seen an orthopedic doctor, so I can’t comment on that. I think a lumbar MRI and one of the sacrum/tailbone should be reviewed for all PN patients. I am familiar with people who have had PN (and sometimes more widespread symptoms) as well Tarlov Cysts, tethered spinal cord, Dural Ectasia, etc. In my experience, PN doctors have not taken a wide view of the symptoms or considered the spine when evaluating and making treatment recommendations. If I had known about my potential spine issues, which were present on imaging done by and reviewed by these doctors, I would never have had PN surgery or other procedures. I have heard that Dr. Hibner will be reestablishing a practice in Phoenix this fall and that Dr. Castellanos is out of the office until October 1, so it will likely mean you will need to wait several months to see either of them. I had my MRIs looked at by a urologist who previously worked with Dr. Irwin Goldstein in CA and is familiar with spinal causes of PN, as well as a neurosurgeon in the Washington, DC area familiar with Tarlov Cysts and other spine issues that can contribute to PN. Good luck with your consults, I think more opinions is always helpful even if the doctors don’t agree.

Keep me posted,
Stephanies

[MelodyW]

Stephanie,

Thanks so much for all this information. I don't know exactly what's going on but I read a couple articles about tethered spinal cord. The condition sounds at least very similar to my symptoms and what I'm experiencing and could maybe a lead to a more accurate diagnosis. I've also noticed that the left side of my body and the way that my SI joints are placed is very odd. It kind of looks like some kind of deformity forcing the SI joint to twist in order to be in somewhat the right spot and it feels like the left ilium/sacroiliac joint is running through the middle of my pelvis rather than on the left side.

I searched Dr. Goldstein and one page says he is 70 years old and not accepting new patients at this time.

1. Do you happen to know if Dr. Goldstein is still currently practicing?

2. If you're comfortable with it, can you tell me the name of the urologist you saw who previously worked with Dr. Goldstein? Was he located in California, too?

3. If you're comfortable, can you tell me the name of the neurosurgeon who you saw in Washington, DC?

4. Were any of the people you spoke to who had spine problems alongside the PN users on this forum? I might try to read their posts / related posts on here.

5. Would you consider your pain to be closer to intractable pain than chronic pain? I've read some articles about intractable pain and honestly related more to those descriptions than to any descriptions I have read about chronic pain. I'm not sure, but think I could possivbly be on the low end of the spectrum of people with IP.

Ok, I will keep that in mind about Drs. Hibner and Castellanos. I am so sorry you were not diagnosed with your additional spinal issues before your PN surgeries. That sounds very upsetting.

Yes, I agree, multiple opinions can be useful in looking at the issues from different angles and hearing differential diagnoses.

I'm not sure how soon I will be able to travel to see these doctors just because my energy and functionality are so low that I think it's going to take a while to arrange and I will need to set up a home health aide in the states I visit also.

I have been feeling desperate and hopeless and the neurologist I'm seeing thinks that it's auto-immune related lumbosacral plexopathy but I really don't resonate with that diagnosis. Thanks for shining a glimmer of light on my possible next steps. My latest pelvic and sacral MRIs have supposedly shown my sacrum and tailbone and that area is supposedly normal according to my providers. :/ But I have also read that those nerves will not alway show on an MRI image even if there are issues there. I've also heard a spine doctor on the radio mention that he looks for different issues than other spine doctors in MRIs. This makes sense because it seems like sometimes the MRI reading really depends more on the doctor/radiologist who interprets it.

I hope this isn't too long, I know it's difficult to read long messages with chronic pain.

Thanks so much again, I really appreciate it.

[stephanies]

Melody,

I believe that Dr. Irwin Goldstein is accepting new patients. I suggest calling his office. I saw Dr. Rachel Rubin who had worked with him. She currently practices in Washington, DC as a urologist. I also consulted twice with neurosurgeon Fraser Henderson, also in the Washington, DC area, who went over my imaging and discussed possible issues that could be contributing to my pain, including Tarlov Cysts. I don’t know of others on the forum who have seen either, but they may be here. My pain has been quite constant and severe for the last 6 1/2 years although it began much longer ago than that. I am not sure how to distinguish chronic pain from intractable pain. It has been 24/7 for me and certain parts are worse when standing, others worse when lying down. No relief in any position. Lately I have been getting an odd feeling in the top third of my foot, especially when lying down and it becomes painful at night and disrupts my sleep. I am not sure if this is related to anything else I have going on. Any stretch on the PN is excruciating for me, bending or even just sitting on the toilet.

I am so sorry you are having such a difficult time. I feel like I spent many years in a fog of hopelessness and pain, but I do feel that lifting somewhat recently.

Take care,
Stephanies