My tumor is still in me.

[maryam]

Hi All
I was recently diagnosed with SCT. I had my first surgery last month but my Dr. didn't take it out. He said I would lose control and feeling on my legs, bladder, bowel movemnt and more or less.
So they just opened room for the tumor for now.
After one week my spina fluid was leaking out of my incision so i had to go in to fix the patch on my spine ( the one that they used to open room for the tumor) that is fixed now but I still have my tumor and have to do MRI every 3 months for now to make sure it doesn't grow. If it does, then they will take it out.
I have numbness and tingling on my feet and my entire butt and private area.
Has any body experience the same scenario that they left the tumor in for now after surgery?

[m1ta]

Very sorry to hear about your problems maryam. I have a few questions if that's OK:


Did they biospy the tumor and determine the type of tumor it is?
What is the size and location of the tumor?
What reason did they give for you suffering paralysis if they attempted to remove the tumor? e.g. The tumor is close to nerves.
When you say they 'made room' what does that mean? Did they debulk some of the tumor or just perform a laminectomy?
The numbness and tingling you mention - Did you have that before surgery?

Sorry for the questions. I am not a doctor, but I am SCT 'survivor' and will try to tell you how I might proceed, in your situation if you are able to answer them for me.

If you are from the UK I may be able to put you in touch with a doctor who could give you a second opinion. If you are from the USA many people that use this site have had tumors successfully removed by George Jallo:

spinalcordtumor.proboards.com/index.cgi?board=neurosurgeonslist&action=display&thread=684

I know he often gives second opinions if you send him your MRI images.

All the best James.

[maryam]

Hi
thank yo so much for responding
I am in San Jose ,Ca.
My tumor is in T9 to T12 and it is benign ependymoma.
It is sitting inside my spinal cord.
It is 1cm wide and 7.5 cm long.
They took a biopsy and that caused the numbness and tingling.
Before surgery I had a lot of pain that I couldn't functoin any more ( sleeping, sitting, walking, driving, ETC...)
They carved few bones and put a patch on the cord so to open room and the tumor doesn't pinch my nerve any more.
They said let's just hope that it doesn't grow any more and that is what I am hoping now.
They said the location of my tumore is very uncommon.
I hope and wish you the best of luck in your journy and looking forward to hear back from you
Thank you,
M

[kezmc3]

Hiya Maryam,

Is it possible you could get a second opinion? My tumor is in the spinal cord in the neck area. I had an op to try and remove the tumor. They couldn't take all of it, due to it being entwined in my spinal cord, it would have completely paralysed me if it were to be removed.

As a result I have to have radiotherapy. Did they say what grade your tumor is? From my understanding a grade 2 tumor will continue to grow, albeit slowly.

I think to be honest it doesn't matter the location of the intramedullary tumor, they are all very rare. I hope you get the answers you need xx

[m1ta]

If I was in your position I would try to get a second opinion, if the second neuorosurgeon says the same as your current then at least you know you have done everything you can.

[kansasmom]

I agree that a second opinion would be good. After my son's first surgery, when his benign, incompletely removed, myxopapillary ependymoma continued to grow, we started getting second opinions from Dr Jallo.

My son's neurosurgeon also talked with Dr Jallo, so that he could report what he saw when he was in there doing the surgery. It is good to get a copy of the surgical report forwarded with the MRIs, but there may also be specific individual stuff about your tumor that the second opinion doc needs to know, not all of which might be in the report.

It's my understanding that typically ependymomas are slow growing, except in kids (my son was 15 yrs old when his started causing significant problems). Here's hoping yours will prove typical and stay stable now.

[maryam]

Thank u all for all ur responses. I will do that then.

[cwallis2girls]

I really think you should try Dr. Jallo for a 2nd opinion. He is in John Hopkins in Baltimore MD, but the best there is!. I know he wouldn't have recommended biopsy and waiting. If it is an Ependymoma in your cord you should go ahead and have it removed. I don't know if that is what he would recommend now since you've been opened up once already but it wouldn't hurt to see. He usually reads MRI reports and surgical reports for free and gives you his opinion. I had an Ependymoma in my cord that was removed C6-T1 last June (2011). I do have loss of sensation from my belly button down but he monitors nerves closely during surgery and backs out if he sees there will be nerve damage. His email address is:
[e-mail]. Tell him your situation and you found out about him on this site and see what he thinks. He is very quick to respond.

[Scott Andersen]

I would strongly recommend a second opinion as well. I have had a situation very similar to yours. It was determined that I had a benign intramedullary ependimoma back in 2006 at the age of 18. Before the surgery I had a large amount of back pain. They were not able to remove the entire tumor due to the chance of me going paralyzed so they removed all they could safely. After this surgery I had constant numbness and tingling from my stomach down, I learned to live with it and had a very normal life.....I went through radiation after the surgery and I too had MRIs every three months


Four years down the road, I started having a very hard time walking, like weeks before my second surgery I could hardly stand up anymore. They went in a second time and they said they had never seen anything like it and my doctor was able to remove the entire tumor easily. They think the radiation treatment I had after the first surgery may have made the second surgery easier than it normally is. Today I have my troubles as I have always been very athletic and active, but am unable to run or do anything physical, but I just remind myself things could be worse and I am very lucky to be where I am.


Its tough living your life 3-6 months at a time, but you always just have to remember things could be a heck of a lot worse and be fortunate for what you do have in life. Just remember your not alone and these experiences I think are harder on those around you then they are on yourself.

[Lostinthewash]

Absolutely get a second opinion. My intramedullary ependymoma was slightly bigger than yours and was T6-T11. I had an excellent neurosurgeon who never even considered leaving it in unless it biopsied as cancerous (it didn't).

I am only 3 months from surgery, and I have some issues, but all were expected. I have no proprioception in my right leg so I have had to re-learn how to walk, but because that nerve was surgically cut and surgically repaired, they have high hopes that it will heal over time.

Aside from nighttime back pain, I had almost no symptoms. I could tell from my neurosurgeon's surprise that I was still walking (and had full bowel/bladder control), that surgery, and surgery fast, was my best option. In the two months between diagnosis and surgery, it grew enough that my surgeon thinks I had about six months left before paralysis.

I am finding that recovery from the removal of an ependymoma that big in my spinal cord is tough, but it beats paralysis. And the thought of something growing in me just totally grossed me out.