Post Surgery, Long Term Affects

[qhcrazy]

I hate to even bring this up, but I really want to know what's in store for me long term. Who out there has had an intramedullary ependymoma removed and what are your long term affects? Mine was totally resected last September, and I have read about others that have had signifant muscle loss and coordination. I am almost a year post op, and feel pretty strong. My muscles feel good, although my feet and legs are a bit slower, I don't feel "weak", but I hope that that won't happen later. I know everyone's stories are different, but what are yours in the long term realm? I'm having a problem coping right now and am getting anxious about the "future" and what it might bring. I'm trying to stay positive but it's hard when there's a possibility of lessened strength or mobility lurking.

[Linda51]

As my neurologist told me years ago we don't have a magical ball to look into to tell us the future. I don't think I'd really want to know anyway the future will take care of itself and there nothing we can do to change it. It seems like you are doing great or so so great so hang on to that and don't worry about everything else. I am 14 years out and some things gotten better and some things stay the same and other things gotten some worse. As you said there no 2 people alike in their outcome or recovery. Exercise is the key and get yearly MRI's up to 5 years than maybe your doctor will let you have a few years off until the next one. Keep a journal how you feel each year and you will be able to tell if you are getting better or see some changes.

I know we all have wonder how it going be years down the road for us but honestly there is no answer and today is all we got and tomorrow is another day. Live your life one day at a time then everything else will take care of itself.

~Linda

[Tmasgio]

I just wanted to add that medicine and scientific advances take place everyday as well. So, chances are good that there will be something out there to help. However, our bodies are not meant to last forever that is the cycle of life and no one can stop aging.

[Joel]

I concur with what Linda is saying. The only thing you can do is to keep up with the exercising and PT and pay attention to what your body and your docs are saying. It is a 100% certainty that your deficits will either get worse, stay the same, or get better. Your tumor could also come back. You've got to keep working, living one day at a time, and hoping for the best. That is all any of us can do. But, it sure beats moping around and doing nothing, right? Please don't go down that road. Believe me, it is very counterproductive.

[rugger8]

I too had my tumor totally resected and was left with some pretty big deficits. I progressively got better for about a year and for the last three years things have stayed about the same.... no better no worse. Everbody is different but Exercise/PT is key for us to maintain everything we gain back after surgery. You say that you feel 'pretty strong' which is pretty darn good after a year. You should concetrate on trying to keep feeling that way.
It's ok to have a bad day once in a while, (we ALL do) just make sure you get up tomorrow and have a better one!
Sinking is not an option....Swimming is much more fun!!

[Oscar Medina]

Intramedullary Ependymoma C4-C7. successfully removed by Dr. Ziya Gokazlan from Johns Hopkins in Baltimore, Maryland on March 29, 2005. Pathological tests were done during the surgery and it was benign. It has not returned after three years. I do MRIs once a year. The tumor was not encapsulated and in spite of that I have all my motor functions intact. The tumor had a cyst attached on top. Everybody seems to come out with some loss of sensation. I have 10 plates and 20 screws. I requested that and my neurosurgeon did everything possible not to fuse me. We did speak about it during our consult. I have 75% range of movement in my neck which I'm thrilled about. I have some loss of sensation from my nipples to my feet. I was out of the hospital after two weeks (one week of intensive rehab) and did a year of physical therapy back at Casa Colina in Pomona, California. Beware of the medication you're given after surgery. Don't take any strong pain medication for more than a month if you don't have to to make sure you don't become addicted. Some of the medications may have a negative effect on your muscles. Watch out for that.

What I came to understand after time is that our surgeries are in essence spinal cord injuries. The fact that some of us come out in good condition is nothing short of miraculous. Stay on top of your exercise (stretching, running and resistance and free weight lifting)and make sure you have yearly MRIs done during the first five years. If you're a year post op, don't worry too much, but do stay watchful.

Do you take medications?

Oscar

[qhcrazy]

As usual, you guys are right on! Thanks for the advice and I know I just have to live one day at a time. I am such an impatient person and it is sooooooooooo hard NOT knowing what to expect. I know what I have to do, it's just hard for me. I too am completely defecit from my armpits down to my feet. It's so good knowing I can come here and you all know exactly what all this feels like and what to do about it both physically and mentally. Thanks so much!!!!

[8338]

I think that it's wonderful that your muscles are strong and you don'tseem to have any mobility problems. I think that, and this is my own opinion, that if you don't have any deficits at this poing that with costant excercising you won't loose any mobility in the future either.
Like the others have said, even if you don't feel like excercising, do it! Otherwise, you'll get stiff. Besides, it makes your body feel good after doing it :-)

Good to have you here with us.
Barb

[stevieray]

Oscar,

I'm in San Diego, not too far away from Pomona. If you ever get down this way it would be nice to have coffee or something.

Steve
[e-mail]