Mother with Ependymoma and need help please!

[mamamia13]

My mother has had a long road the past 6 months, and Im curious to know if it is usual what she's going through. Her doctors here have only seen 8 cases of this, and had to consult with doctors around the country for advice.

In september they found her tumor, I believe in L4. She went in for surgery, where they said they "couldn't" remove it, but took a biopsy, and found it was an ependymoma. She went through 6 wks of radiation going every day. She then was very weak and put in rehab facility.
After about a month there, she wasnt making much progress, had trouble holding her bladder and she wasn't sure of who we were, and what was going on. They did a cranioscopy (??) and found a viral infection in her temperal lobe. They put her on an antiviral medication, and claimed it was due to her lowered immune system from radiation. (She also had a shingle's out break). They took care of that, where her mind become stronger, and she became lucid, at least during the day. At night, she'd still be confused, because of "damage" to the temperal lobe, and tiredness.

She still wasnt making any progress in the rehab facility, and then her mind started going again. They recently put a shunt in to drain her cranial fluid that was building up against her brain, not sure of why it was backing up.

She is still very week, radiation was in october. Apparently the tumor is gone, but shes not making progress, and her body is very weak.

Is this normal? Is this all a possible effect from the tumor, or could something else be going on? The family and I are very worried, and honestly slipping faith with the doctors here, who, like mentioned, have only seen a handful of cases. They also claim the tumor with "most likey" be back in about 2-4 years.

Im just scared because of all of the events, and very unsure of what to believe, because their explanations and treatments have changed so often! (From two weeks before Christmas, being told not to expect her to last long after the holidays, to being able to go home early January!!)

Anything would be a relief! Thank you!

[IdaB]

Hi mamamia -

I'm glad you found us, though of course very sorry to hear what you and your Mom (and whole family) are going through. It sounds like she had and is having a very, very tough time, and I home things start to get better soon.

I should also preface what I'm about to write by saying that I am not a doctor, just another SCT survivor. But your mother's case seems unusual to me in several respects. First, I think most of the time surgeons (at least a really good surgeon) could remove an ependymoma at L4, and usually wouldn't do radiation instead. Now, there may be something unusual about your mom's case that makes everything her doctors have done the best thing for her - but without knowing more, I'd say you're right to be considering getting a second opinion. Some of it is water under the bridge now (especially if the tumor is gone), but combined with her doctor's lack of experience, I think you're right to be concerned.

Also, I haven't heard before of a tumor, especially a lumbar ependymoma, causing the other symptoms your describe. Again, I'm not a doctor, but I would be suspicious of either an unrelated problem, and/or a reaction to the surgery or radiation. If I were in your position, I would be trying to consult someone at a major medical center center. At this point, I'm not sure if you need a spinal cord tumor specialist to deal with the other issues, but probably it wouldn't hurt to find a great neurosurgeon or neurologist (and/or someone in one of those fields would probably be in a better position to tell you what type of doctor to see).

If you give your general geographic location, and/or your ability to travel, there's a good chance someone here can recommend someone to consult.

I hope you and your mom get some answers soon.

Best,
Ida

[Donna]

sorry to hear your mom is having such a difficult time. I had an ependymoma removed between L1-L-3 from the nerve root in March 2003. I suffered with this prior for almost 2 years before being correctly diagnosed. Have they given you a reason why it could not be removed? and what level the tumor was that would justify radiation? After surgery I did have bladder issues for awhile. I was very surprised that there is not much info out there on adult ependymoma's (where they come from or what causes them) I doesn't sound like your getting much info from the doctors. It is your right to get as many opinions as you feel are needed. it took 3 doctors before I found one that told me the pain in my back and legs was not all in my head. basically they told me I wasn't getting any younger and that the pain was from getting older. can you tell me the state you live in I live in Massachusetts and have found 2 very good doctors that take the time to answer all of my questions. The first 6 months after surgery was hard because not only are you physically overwhelmed but emotionally it hits you like a ton of bricks. Your mother is so lucky to have you. My family and friends helped me through a very difficult time. I also had a a case of the shingles and that is more painful than the back surgery cause every nerve in your body hurts. the wind blowing across your skin hurts. What medication is your mom taking? One of the things that I did was every time I had a test or MRI i would ask for a copy of the report. as far as a recurrence goes I would have an MRI every 6 months up till last June now I don't have to have one until June 2008. I'm not sure if this info has helped, but Idab is right keep pushing for answers until you understand what is happening. Good Luck

[mamamia13]

Thanks for responding. I will definitely look into speaking with other doctors.

Since the post, my mother has had a shunt (i think thats it) place in her head to drain the cranial fluid that was backing up, why I'm not sure and have not received a straight answer. But she has been much more lucid, which is refreshing. She has also been put in an acute rehab facility. They claimed they were not able to surgically remove it because it was intertwined with the nerves and the spinal cord wall, which I don't know if thats unique or not, and maybe that is why they used radiation.

I thank you for your advice, and I'm in Ann Arbor, Michigan. Any knowledge of doctors out this way, or phone numbers of others elsewhere that I could maybe call and just speak with about the situation?

Once again, thank you!