Possible Astrocytoma

[showell]

Hello All. First of all thanks to all who have posted positive outcomes in their own journey. This has been good for us to read. I was told yesterday that I most likely have a spinal tumor and it could be Astrocytoma. I am 37 and we are currently looking into a second opinion. We were not satisfied with "lets wait for 3 months and do another mri". I have reached out to Duke as well as J Hopkins. Waiting to get my records and we will see who can fit us in. My only question for now is where do my symptoms place me? Left arm tingling and right leg having hot/cold sensations. I can walk fine and have all my functions intact. Any thoughts or suggestions would be appreciated.

[jasonohio]

I was 38 when my tumor was diagnosed -- and then surgery four months later. I was not afforded the option of waiting as my tumor, an ependymoma, was large (3.5cm x 1.5cm) and immediate surgery was recommended.

I had long-standing symptoms for almost four years when diagnosed. In fact, for those four years I had various treatment for my symptoms not knowing I had the tumor. I had numb and tingling hands for almost all of those four years. I had a painful neck on and off. And then finally my legs and feet started getting numb and I finally consulted a doctor who cared and had a clue.

In retrospect, I probably had that tumor for a very long time. And maybe I could have lived with it awhile longer. But my surgeon said there was very little room left and any growth could have catastrophic consequences. I don't know if this info helps you -- though it sounds like you are not as far along as when I was finally diagnosed.

They symptons I had stayed constant for a very long time. Only toward the end of the four years did I notice the lower-body numbness and that was very minor/almost imperceptible. I am hoping these comments are a little encouraging.

One thing to carefully consider is that just about everybody (here anyway) has some consequence from their surgery. My surgery was a great success, but I lost a lot of my feeling from the waist down. It's 2.5 years later and very little of that feeling has come back, and I doubt now it ever will. On the bright side - other than the sensation/minor balance issues - I can do everything I did before.

My surgery was at Johns Hopkins and we were very happy. Happy to answer any other questions you might have.

[showell]

Thanks so much for your response. We have reached out to John Hopkins as well as Duke. So far Duke has been more responsive. Could you let me know which surgeon you worked with at Hopkins?

[millelacskay]

I have contacted Dr. Jallo at John Hopkins a number of times and he has always been very responsive. His info is:

Email address... [e-mail]

Mailing address:
George Jallo, MD
Division of Pediatric Neurosurgery
Johns Hopkins Hospital
600 North Wolfe Street, Harvey 811
Baltimore, MD 21287

You can send him copies of your MRI's and he will get back to you with what his opinion is and what he thinks you should do. It is pretty normal to wait for the results of a second MRI to see if the tumor is growing before operating unless your symptoms are severe.

Good luck and keep us posted.

Kay

[jasonohio]

Dr. Jallo was my surgeon. He did a great job for us.

[showell]

Sept 20, 2012 19:01:33 GMT -6 millelacskay said:

I have contacted Dr. Jallo at John Hopkins a number of times and he has always been very responsive. His info is:

Email address... [e-mail]

Mailing address:
George Jallo, MD
Division of Pediatric Neurosurgery
Johns Hopkins Hospital
600 North Wolfe Street, Harvey 811
Baltimore, MD 21287

You can send him copies of your MRI's and he will get back to you with what his opinion is and what he thinks you should do. It is pretty normal to wait for the results of a second MRI to see if the tumor is growing before operating unless your symptoms are severe.

Good luck and keep us posted.

Kay

Thanks for the info. We are desperately reaching out to j Hopkins and dr Jallo. It appears he has a lot of experience with issues such as mine. We have sent records and today we sent a link for the MRI to him directly. Thanks again!

[showell]

I wanted to update the group with the value of a second opinion. We went to Duke yesterday and were told that I do not have a spinal tumor at all. This information was given to us with a LOT of confidence. I was told that what is showing on my current MRI is residual swelling due to the chord being traumatized as bad as it was prior to my fusion at C5. We will continue to seek another opinion and have an appointment scheduled with J Hopkins in November. Having said all of the above we went from a certain emotional low to a very positive emotional high over the course of a week and I have to give credit to this board for giving us the knowledge and the strength to excercise our right to look other directions. I would further like to say that we met with Dr Bagley at Duke...........he was unbelievable. If I was being faced with surgery I would sincerely consider this group as my wife and I were blown away by the facility as well as the staff. Update to follow in November!!!!

[showell]

My wife and I are now home from Baltimore. We were seen by Dr Wolinsky and we found his knowledge to be very informative. He agreed with the information received from Duke and stated that the problems I currently have are related to the spinal cord trauma that I had. The spot on my cord they are seeing and had believed to be a tumor he felt was not a tumor and would likely always be there as a "scar" . As far as my condition, he felt that I would improve but could have lasting residual loss in some areas but nothing like the pre-surgery issues I was having when the disc was pinching the cord. Again, I want to thank this group for the support and I will be sure to update after my next MRI which is currently scheduled for December.

[parabnormal]

Could someone tell me if George Jallo, MD will review the MRI for free or what his charge is? Thank you!

[peaceandlove]

Free as far as last 3 times.. He is a great generous and humanize person. I ask God to keep him safe and which him more success...