Intradural Extramedullary Spinal Tumor diagnosis

[kayaker66]

Hello all,

I am new to this whole spinal tumor thing.  I am a 48 year old male.  It started with an MRI of my lumber spine because of low back pain that radiated into the right butt, leg and foot. That MRI revealed the likely cause of that issue being a bad disc between the L4 and L5 vertebra. That MRI also revealed a mass in the spinal canal in the T12 - L1 area. Another MRI of the whole spine was done as well as my brain and that was the only mass noted. It is diagnosed as an "Intradural-Extramedullary Spinal Tumor" and surgery is recommended. It is not immediately urgent but sooner than later is what my neuro surgeon suggested before it would start causing and neurological symptoms.  I am in the University of Wisconsin Hospital System and my research so far would indicate that I would be in good hands with the surgeon I had my appointment with.

This is all a little overwhelming and frightening.

What other research or steps does anyone recommend?

Thanks for any thoughts or comments anyone can give.

Kayaker66

[mateo]

Hi,

I was diagnosed with an intermedullary spinal cord tumor in the summer of 2014. My symptoms were similar to yours. Extreme back pain on and off for a few years. The pain would radiate to my feet in some cases. An MRI of the spince revealed a mass in the T-11 region. I was referred to a neurosurgeon and scared. I was beginning to urinary insues and retaining. Shortly after I was told surgery would be needed sooner than later I began having balance and walking issues. I started limping in my left leg. Im sure if i had waited longer I would'nt have been able to walk. My tumor was an ependymoma which is a benign tumor. It is a slow growing tumor which was likely in my spinal cord for 20-30 years per my neurosurgeon. My general recovery took about 1 year and I am still working on balance and quad strength which I lost due to inactivity. I would say im about 85-90% normal and I am in no physical pain. My back feels better than ever. I just need to continue to work on some small deficits.

I think it's good that you caught this now and would trust your neurosurgeon on what to do next. I would not wait too long before having surgery. I'm sure you will recover fine but it does take time since its a very delicate and sensitive surgery. I wish you all the best. Please let me know if you have any more questions.

Take care,

Mateo

[Mollymarie]

Hi there

Wow can I relate to your situation. I had a spinal cord tumor that was removed last year only to be followed up by another surgery to clear out a CSF leak. I want to be encouraging but I also want to be truthful It is NOT easy. It is mentally draining and physically draining. My life has changed dramatically.

I constantly think about what if my doctor didn't find it in time. I could be far worse  . But I am a whole new person with different issues.

It changes your whole life.

I am still struggling to get through the process as I was just diagnosed as having a Tethered Spinal cord that will require a third surgery. It can happen after your spinal cord is messed with. I wonder if it will ever end. I am tired, drained, depressed and I feel I am going to deal with this for the rest of my life. I am/was an outgoing, vibrant and energetic person who now has become a hermit.

I guess my reason for writing. MAKE sure you MUST have the surgery, ask a lot of questions. Be prepared for a lot of down time right afterwards.

Be kind to yourself and remember no matter what---- the doctor is the one saving you from future more dire issues.

But really - one year is about the time I started to feel better.

Take care- be well ,,,, do what's best for you.

[kayaker66]

Thank you mateo and Mollymarie for your replies. 

If anyone else has their story of something close to what I am facing please feel free to share with all or message me.  I am just trying to gather others stories, positive and / or negative. 

My situation again is diagnosed as a intradural extramedullary spinal cord tumor in the T12 - L1 area of my spine.  I am having NO apparent symptoms from my tumor as of right now.  It was found through having an MRI due to a suspected disc issue which I DO have and is likely causing my current RIGHT side low back pain and RIGHT leg / foot numbness and tingling.  Not that it couldn't be contributing to the pain, numbness and tingling on my right side, the neurosurgeon says the position on my tumor will likely cause left side issues when it gets bigger.  The tumor getting bigger sounds as though it is more of a WHEN than IF.  Could be months or it could be years.  Why my neurosurgeon is suggesting surgery sooner than later, is while it is smaller and not causing any real neurological problems would be better than if it gets larger and is causing issues.  As I am beginning to understand all this, I believe once neurological issues begin, those are things that could become permanent damage and never really come back or improve after surgery.  Obviously the surgery itself can cause issues.  This is all so difficult to sort through.  Darned if you do and Darned if you don't.

I am currently thinking of surgery in 2016 yet but later in the year.  Still trying to process all of this.

Kayaker66

[Matt]

I'm not a doctor but the symptoms that come with a spinal tumor are not enjoyable whatsoever. If I had the choice to remove it before the symptoms showed up I absolutely would have. As if now I am only suspecting a spinal tumor because I have several of the same symptoms that it comes with (leg weakness/pain, abdominal pain, bowel obstruction, and mid back pain). I do have a question though. I am getting an MRI of my spine later today and they told me they are not using the dye that apparently helps light up tumors. Why would they not use the dye if it can help find a tumor easily? Should I just insist that they use the dye?

[kayaker66]

Hi Matt, after my initial MRI where they were actually checking for disc issues and found a tumor, I had to go back for MRI's of my full spine and brain without contrast and also with contrast. As I understand it, the contrast does brighten the tumor.

[Matt]

Did they originally find the tumor with dye or without it? I'm just worried they may miss something because they did not use the dye on me. I should be getting my results Monday morning. This is a rare occasion when I do not enjoy the weekend. Too much time to think about what the MRI may show. Anyways good luck with your surgery whenever you decide to get it. From my understanding most spinal cord tumors that start in the spine are benign? I have a strong feeling that if I do have one it started in my spine because I have had CT scans/MRI's of pretty much my whole body. Thank you for your input

[kayaker66]

Matt,

My tumor was visible on my initial MRI without contrast and is on the smaller end as far as size right now.

Good luck with your appointments and hope it will all be the best it can be for you.

Kayaker66

[MicheleB]

This group also has a facebook page Spinal Cord Tumor Association, lot of helpful people on there. I am two months post-op, intradural, extramedullary schwannoma, 3.5cm T5-T7.

[jamiew]

I had a T12 to L2 intradural extramefullary tumor removed in January. It ended up being a grade 2 clear cell meningioma ( not the best news) . I had a laminectomy to remove the tumor and then a huge CSF leak the size of a grapefruit on my back requiring another surgery to repair the leak. 49 staples in all. The pain I endured with the tumor was horrendous. Where I live in Canada it takes many many months even years to get MRIs and surgeries so it was an excruciating period of time living with the tumor and the pain. You do not want to have the tumor grow and endure the pain I suffered with. Now a few months after surgery it is a slow recovery. Lots of nerve issues in my legs and aches and pains. Frustrating part is that it seems no doctors or physio or other medical professionals have ever treated a spinal tumor surgery patient so nobody knows how to treat me. Its been one hell of a journey and it's far from over . I don't know what to suggest to you but I would recommend getting it removed before the pain and problems become to severe and irreveresable .