Questions about Conus Medullaris & Cauda Equina injuries, and Arachnoiditis

[anthonyh]

Hi my name is Neal, but also go by Anthony.

I have some questions about conus medullaris syndrome, cauda equina syndrome, and arachnoiditis. As all three of these to have very similar symptoms. And each one seems as likely possible as the others to be causing the hell that is my neurologic symptoms.

A little about my symptoms to give you a view to what I am going through. There is a rather painful swelling sensation that stretches from my sacral area, to just where my thoracic area starts. This is combined with an intense burning sensation, and periodical sharp stabbing pains. Bilateral leg weakness with very noticeable foot drop. Swelling sensation in my ankles combined with sharp stabbing pains.
There is also pain in both of my buttocks, this pain seems to stretch from my thigh area down to my ankles/feet and occurs along the outermost part of my thighs, but especially the left one. Feet also hurt along the bottom, feels like walking on rocky gravel. Severe urine retention roughly 600-800 ml on average, and I already have a catheter in place for that, and also fecal incontinence pretty severely to as I am afraid to go out in public.

All of my doctors urologist, neurosurgeon, PCP, and PM. seem to agree it has to do with the nerves in my back, most likely compression; however they are not quite sure where it is occurring yet. As back in Feb.1, 2013 my diagnostic tests came back relatively normal MRI's brain, cervical, thoracic, and lumbar "except for minor lumbar stenosis". SSEP, and EMG did not say much of anything either. But all four doctors have watched my symptoms just worsen till now and all are in agree there is definitely something wrong.

Which leads me to my questions I am told that both conus medullaris and cauda equina syndromes can slowly develop from back wear and tear over time.
What are some signs/symptoms of the slowly developing forms of these two syndromes?

As well as many of my symptoms also seem to point to another possibility, arachnoiditis, many of my symptoms also reflect this disorder, as I also have trouble swallowing food, pills, etc on top of all the other symptoms.

So what are some signs/symptoms of arachnoiditis?

Any help with these questions are really appreciated as my suffering only continues to worsen, and I am already past my wits end.

[SCI-Nurse]

I think you are a little confused. Arachnoiditis is not a condition that is limited to a specific area of the cord (as are conus and CES), but can occur any place within the cord. This is not the damage, but the MECHANISM of damage, such as trauma or infarct would be. So the problems you have with swallowing, etc. would not be from conus or cauda equina arachnoiditis, but could be from problems with your brain stem or upper cervical cord.

Have you seen a neurologist?? What do they say?

Arachnoiditis is inflammation of the arachnoid, which is one of the 3 meninges of the central nervous system (including the dura mater and the pia mater). It can be caused by trauma, or infection, or can be ideopathic (with no known cause). It can resolve without any neurologic deficit, or can cause long term and permanent damage to the CNS in the area of the inflammation. Have you been given this diagnosis?? What tests were done to determine this?

The neuropathic pain you describe is classic in either CES or cauda injuries or damage. The tests you have appear to have ruled out any compression or the cord or roots though, which would be the case if your injury were due to back "wear and tear" over time. It could be due to non-traumatic causes such as arachnoiditis, TM, or myelomalacia, although the latter would have shown up on an MRI.

Meanwhile, you need to see a good physiatrist, get referred to at least an outpatient (if not inpatient) acute SCI rehabilitation program, and get onto both a good neuropathic chronic pain management regimen and bowel and bladder management programs that work and are healthy in order to manage the problems you are experiencing.

(KLD)

[anthonyh]

Thank you for the response.

No there is not a diagnosis yet, these names just keep coming up in discussions with my doctors. Arachnoiditis being the most recent possibility suggested by my neurosurgeon. He believes it may be the possible culprit of much of my pain and inflammation occurring. But wants an EMG done before making such a diagnosis in that direction.

Cauda Equina seems to be the problem they are most concerned about as all the symptoms are there, but past diagnostic testing came back relatively normal except for the minor lumbar stenosis the neurosureon found. So this seems to be the most reoccurring prognosis so far.

Saw Urologist most recently to rule out any kidney damage as well but that ultrasound came back normal "thank god".

I live in Reno NV. But am quite close to such medical treatment centers like UC Davis in California med center. Not sure if you know of any SCI specialists in my area or down there?

But thank you for the insight as you seem very knowledgeable in the area of SCI injuries.

So not sure if it is a cauda equina injury yet, but it is the most talked about possible diagnosis between my team of doctors. I have considered seeing a physiatrist but I do not know what exactly do they specialize in?

[SCI-Nurse]

Thank you for the response.
Saw Urologist most recently to rule out any kidney damage as well but that ultrasound came back normal "thank god".

An ultrasound does not test for kidney function, only for anatomical problems with the kidney, such as hydronephrosis, shrunken or dilated kidney, tumors, cysts or stones. Blood and urine chemistries are needed to test for kidney function, and for your bladder, urodynamics (CMG & sphincter EMG) is needed.

I live in Reno NV. But am quite close to such medical treatment centers like UC Davis in California med center. Not sure if you know of any SCI specialists in my area or down there?

I believe Marca Sipski, MD (physiatrist) is still practicing in the Reno area (tel. 775-982-3500). Otherwise both St. Mary's and UC Davis have physiatrists on staff in the Sacramento area.

So not sure if it is a cauda equina injury yet, but it is the most talked about possible diagnosis between my team of doctors. I have considered seeing a physiatrist but I do not know what exactly do they specialize in?

A physiatrist is a physician specialist in Physical Medicine and Rehabilitation (PM&R) and are the specialists most knowledgable about the management of the results of spinal cord injury or disease. Some also have an additional board certification in Spinal Cord Medicine, which is a plus if you are looking for a physician in this area.

(KLD)

[anthonyh]

Yeah sorry it was my first ultrasound since they placed in catheter,so I was not really given a full detailed explanation of what it was to do. The urologist pretty much just assured me everything was OK, at least as far as the kidney was concerned.

Thank you so much for the physiatrist recommendation, I will give that doctor a call.

And thank you very much for all the help in answering my questions.

I do just have one last question, is it common to have pinprick sensation remain but not touch in the saddle area for cauda equina injuries?