Doctors prognosis

[tyler1212]

I just recently had another MRI. While I was pleased to hear that there had been no growth of my remaining tumor, I wasn't as pleased to hear what my new surgeon had to say about his thoughts on my life expectancy. The doctor who had originally done the surgery, gave me as a prognosis, a pretty good one. He said that he thought that I should be able to live a pretty average life span. Of course, if the tumor would start to grow again then I would need another surgery to remove more tumor. I just couldn't leave well enough alone and I just had to go ahead and ask my new Doctor what his thoughts were on the subject. He said he thought that I had at least a few years left, maybe more if the tumor behaves itself. I liked the first prognosis better. I suppose my original doctor was saying the same thing but in just a much nicer way. I mean the way it was put the first time, I really felt that my future was looking pretty good, sure, I would have to deal with the issues of pain and so forth, but at least I could put the surgery and the left in tumor behind me. Now, I'm not feeling quite so confident about my future. tumors grow right? I mean thats what they do, thats there only purpose. Why would the remaining tumor not grow. My tumor is a subependymoma and it's totally benign, but I guess that doesn't give a person a ticket out of the world of uncertainty. Sometimes a second opinion bites you in the butt. Unfortunately I'm a, the glass is half empty, kind of guy and this prognosis really threw me for a loop. The roller coaster ride continues. Please forgive my ramblings, but my wife needed a break.

[peilynne]

Dear Tyler,
I am sorry for everything you are going through. There is a lot that goes along with being diagnosed with a spinal cord tumors. I'm glad that you come to this site for understanding and support as everyone on here knows exactly what you are going through and feeling. I had an intramedullary subependymoma removed, benign, from c3-t2 last june. I am still in therapy as my left side is still somewhat parayized. I have to use a power chair to get around. That being said, I intend to make a full recovery and remain very positive about my outcome. The doctor was not able to remove all of my tumor. My 1 year mri showed no regrowth, thankfully. It is my understanding that these tumors are very slow growing. I never think about my tumor regrowing. Please just try and make the most of every day you have. There are always medical advances so try not to worry about something that has not happened yet, and if I were you I would seek a third opinion as there seems to be quite a descrepency between the first two. The best thing to do right now is live your life to the fullest. We all have our days of doubt and worry but try to put it aside. I always think to myself when I'm really down is that there a million people out there who would trade places with me in a heartbeat. I know, because I've met some of them. Take care, stay strong, and know that you can always come here for support. My thoughts are with you,
Lynne

[Linda51]

Hi Tyler,

I have not heard anyone dying from a subependymoma tumor. The worse kind of tumor to died from is the Astrocytoma or some kind of high malignant tumor that keeps on growing and spreads up to the brain. And there is a few in our group that is still living 30 years with the astrocytoma so no ones really know these things.

I wouldn't let this doctor worried me at all he probably not experience with these sct and just the thought of a tumor in the spinal cord does scare some doctors and that because they are not familiar with them at all. I remember talking to a pain doctor in Las Vegas over the phone when we were trying to get that kind of doctor for our conference. He was like I don't want to see that kind of patients they are always in a wheelchair which I told him they aren't. He did come to the conference to speak to us and he got an eye opener when he was looking around to see that none of the sct survivors were in a wheelchair. So sometimes it takes educating even our doctors out there. Another example for you there is a person in our group that got diagnose a few years back his doctor told him his tumor was inoperable and he needs to go home and get his life in order. He went home got on the internet and went searching for answer. He found the SCTA website he found out hey i'm not going died there is folks out there that had successful surgeries and he did more researching found out about Dr. Jallo and wrote to him Dr. Jallo agree to do his surgery it was a good surgery outcome and within the first 6 months to a year he was walking 5 miles and still doing good the last time I talked to him.

I'm saying all of this don't let this worried you. You know while you are thinking about the tumor you could get killed in a car accident, be shot at your house or even have a heart attack and it takes you out. Life is so unceartin enough as it is so why worried about something you can't do anything about. Make sure you get MRI's at least once a year for the first 5 years and get exercise and just enjoy life to the fullest. If you really need some more assurance send your MRI to Dr. Jallo and ask him his opinion on this and i'm sure he will tell you your going be okay and the only worried you have if the tumor returned but even then a second surgery can be better than the first one. I say that because I have been through 2 so that was the way it was for me.

Take care, and enjoy this time that your tumor not growing. It been 14 years for me with some tumor still there and so far no tumor has grown.

~Linda

[peilynne]

Oh yes Tyler,
Listen to Linda, very good advice. I just wanted to mention that my doctor at my spinal cord rehab came in my room just after I flew four hours, by myself, to come back to rehab after Christmas break. I still had two months of rehab ahead of me. Anyway, I was lying in bed exhausated from the flight,and in she comes. Lift one leg, she said. I lifted my "good" one off the bed. Lift the other. It lifted, but not as high or as fast."You'll never walk" was her answer. Boy, was I Pis@#$ off. I really should have switched doctors at that point, but I guess I'm a different kind of person. I just wanted to improve so much at that point, mainly just to prove her wrong. So, that's what I did, I worked so hard at my therapy. Now, that was in January. I returned home from rehab and have been going to outpatient therapy in my hometown, three to four hours a week. Last week, it paid off, big time. For the first time since my surgery I stood on my own and continue to do so, and the next steps are walking at the parallel bars, then a walker. And I know I will do it. Next month I'm going back to my rehab for a three day spinal cord conference and I'm looking soooo forward to seeing that "great" doctor and telling her where I'm at in my progress. The point of my story is this. doctor's don't know everything, and sometimes they say things they really shouldn't.

[mak164]

At 17, after surgery I was just told, "You have a tumour in your spinal cord and we can't remove it." I thought that was that and was in emotional limbo for a while, but fortunately after a course of radiotherapy things turned out OK. Next year will be the fiftieth anniversary!

David.

[tyler1212]

Thanks for the words of encouragement everyone. I know that in a short time I will feel better and that the sting of this doctors words will fade. It's just that it took me a little off guard. I have to say though. Wow David! almost fifty years with a tumor that was not taken out? that's amazing! Keep up the good work! again thank you to all who responded and God
Bless you all! Tyler

[8338]

Tyler,

I was going to tell you just what Linda did; to seek out Dr. Jallo's advice. My first sugeon said that the outcome of spinal cord surgery was to be in a wheelchair and then eventually not be able to breath or even feed myself. I found Dr. Jallo, because of this wonderful site, went to him for my 2nd surgery and he painted a optimistic view of my future. You go and prove that !#! doctor wrong!!!!!!!!!

Barb

[rugger8]

Sometimes these doctors lack some real common sense!!! Maybe they skipped the old bedside manner training.
I had a doctor tell me while laying flat on my back in ICU that I would probably never walk or regain my bowel and bladder function. He chose to tell me this in the middle of the night with no family around. My surgeon, thank god, had a much better attitude. Not only did he say I'd walk, but that I'd be out on the rugby pitch again. Although I'm not playing rugby anymore I can still chase my kids down!!!
My point.... some doctors don't know what the hell their talking about and should think before they speak!!!

Thank you to all of you that continue to prove them wrong!!!

Kristi

[tyler1212]

Barb, yes you and Linda are right. I need to get another opinioin. I will try and E-mail Dr. Jallo. I guess I need to state also that the remaining tumor is at the C5 and T3 level. Growth at the C5 level could mess with my ability to breath on my own, that's what scares the heck out of me. Lynne, It's great to hear things are coming along for you. I know you will win the battle! Tyler.

[Joel]

Tyler:
Remember, doctors are just people--some have no tact, are hacks, and even are unethical and dangerous to be around. It was an opinion, and nothing more. You have to be your own advocate. Get MRIs, maintain your exercise routine, stay positive, and live your life. Tumors can stop growing, slow down, and also speed up. So--he doesn't know any more than you do, how long you'll be around.
Joel