New diagnosis of tumor in conus medullaris

[valerie]

I am a new member and have recently been diagnosed with a tumor in the conus medullaris. I am trying to find information about tumors in this particular location in the spinal cord. Most people seems to have them in the cervical or thorasic areas, and fewer in the lumbar region. Can anyone speak to experience with a tumor in the conus medullaris?

I have an appointment next week with Dr. Michelle Clark at the Mayo Clinic, and another appointment with a doctor in the city where I live and to whom I was referred by the orthopedic doctor who ordered the MRIs. I am also waiting on a reply from Dr. Jallo (thanks for the recommendations on this board!). So in a couple of weeks, I will know the opinions of three neurosurgeons.

Tumor measures 11 mm by 5 mm by 4 mm.  It is a non-expansile lesion that did not enhance on contrast. I really don't understand what this means or how it is relevant. Can anyone elaborate?

The radiologist is suggesting an ependymoma or less likely an astrocytoma.

The orthopedic doctor says it doesn't have the appearance of a cancer to her but I have no idea how many of these things she sees.

The reason for the MRIs was leg pain. An x-ray of my spine showed disk compression in two places in the lumbar region. The MRI confirmed severe right stenosis at L5-S1 (among other more mild conditions). So there is that too.

Many thanks to all of the helpful postings. I am still getting used to this diagnosis and have not spoken to anyone about my "problems" other than my husband. Guess I'm just not ready.

[landofconfusion]

I have a tumor at L5-S1 that also does not enhance with contrast. This is quite rare, from what I understand. Just wanted to let you know that I've known about my tumor for almost 5 years and there has been no significant change noted on MRIs during that time period. Obviously, I've chosen to watch and wait but your circumstances might be different based on your symptoms and any neurological problems that might be present. I am fortunate in that my symptoms are manageable and I am not experiencing neurological deficits. You are wise to seek multiple opinions. It sounds like you're on the right track. Please keep us updated.

[mcguyverdan]

Valerie,
My tumor was a schwannoma at L5. The neurosurgeon showed me the MRI both with and without contrast. You can see the tumor without contrast, but it lights up like a Christmas tree with contrast. It shows up almost white with the dark background. Since the conus medullaris ends at around L2 to L3 your stenosis sounds like it is below the tumor, so they theoretically should be able to treat each issue independently from each other. I wish you the best, and please know that you are not alone. Keep us posted on your progress.

[dolphintale]

Hi Valerie -- since your post was August 15 hopefully you have had the results from 3 neurosurgeons....I hope your diagnosis went well.

A couple of years ago I had a hemangioma removed from my cervical area C2/C3. My neurosurgeon ordered a complete "work up" of my spine and 2 intradural nodules associated with cauda equina were found. The lesions measure 0.6 x 0.8 cm and the smaller more caudally located lesion measuring a proximally 0.3 cm. They both enhance with contrast. My current doctor (of who I trust completely) informed me at my March appointment that surgery isn't really an option for me because he feels the outcome would not be good. I was devastated, I wanted these damn things out of me which is something I think most of us feel. He wants to continue to monitor me by doing yearly MRIs unless I start to develop more deficits. At that point I had slight weakness in my right leg and slight "drop foot", some bladder/bowels issue and sexual dysfunction. He referred me to a neurourologist of whom did a urodynamic test. He found my bladder is still emptying; however, he has me on a two-hour void schedule and Flomax. Some mornings when I get out of bed I'm fine....this morning not so much...I started peeing down my legs...by the time I got to the toilet I barely had to pee! ...he also referred me to a pelvic therapist...she helped with contractions of muscles that was occurring around my pelvic area and has me doing kegles to try to keep my pelvic floor strong. My insurance only permits 25 physical therapy visits a year so I haven't been back in the last couple of months. The urologist also told me I have Cauda Equina Syndrome (CES). In researching this it seems most people develop CES due to an accident to their back or bulging/herniated disks...haven't found many with cauda tumors.

Currently my thighs feel to be getting weaker....when I walk up the 15 steps to my office I can't wait to get up the last step (i used to be very active doing zumba two times a week). I have tried to start listening to my body. I tend to push myself but sometimes it seems my body let's me know when I need to slow down and gives me no options....it's like I hit a wall. In the past couple of weeks, I've really had no choice but to do more walking than usual...I started to develop a slight tremor in my right leg....after a couple of days the tremor was so bad it was causing my torso to shake, my leg would shake standing or sitting. I was worn out...the tremors caused my legs to stay very tense, I'd try to relax them but the tenseness would take over. I slept for a day, when I woke up the tremor was much better--just slight tremors right now--but I have noticed some different numb spots in my legs...the numbness feels like it's under the skin. When I shower, the hot water feels differently on various parts of my legs. I called my doctor when the tremors became bad but he was in surgery. His P.A. didn't feel the tremors were related to the 2 nodules however they did schedule me to come in for an MRI of my lumbar and cervical area in November. It seems many times doctors tell us some of the deficits or "weird" things we are having with our bodies are not tumor related...almost like it's in our heads. However, I remind myself that the first symptoms of the tumor in my neck were pain in my right arm (like I had a pinched nerve) and pain/tingling/numbness in my right jawline. I was told the numbness in my jawline could not be tumor related. Well...when they removed the tumor they had to sacrifice a peripheal nerve that the tumor had wrapped around. Now I have permanent numbness of my right jawline, back of head, ear and tongue. The right side of my tongue always feels like the novicain is wearing off from a dental appointment.

At the end of August, my family convinced me to seek a second opinion. I sent my most recent MRI results to John Hopkins in Baltimore. They scheduled me an appointment for October 15. I was going to cancel this appointment since my current doctor gave me an appointment for November but family and friends have once again convinced me to keep it...i am following their advice.

Sorry if I have babbled. Many times it's difficult telling about all the private things we have happening to our bodies. I can't tell you the number of doctors I have had to talk to about my sexual dysfunction or peeing down my legs, or explosive diarehea or constipation (all with my husband sitting by my side). He has been a great support to me. I have to remind myself that he is going through various stages of this, too. Prior to this we were very active...even after 35+ years of marriage. Who does he talk to about his wife's sexual dysfunction or the fear that someday my legs may not work any longer. Does he have anyone? He has some good buddies but I think he keeps a lot of this to himself.

I am thankful for this site and the ability to share...even though sometime I have second thoughts about posting some stuff. But, we are all traveling in the same boat together.

[funnywalk]

Hi Valerie, Welcome to this forum, where people truly understand how we feel and what we're going through. My astrocytoma is right at the base of my spinal cord and involves the conus too. It couldn't be removed as it has no edges. After three and a half years, I can still walk, swim and control bodily functions. My greatest problem is the neuropathy in my left foot and leg. No meds really help with this. I had radiotherapy for 6 weeks and this has held the tumour at the same size since the operation. I hope you will find this forum a support. It is so easy to feel alone with this rare thing we have.