my jallo visit and tumor regrowth

[robby]

I met with Dr. Jallo today. A little more than a year after my first surgery with him. During the first surgery he had to stop due to loss of "signal" to my legs and left arm. The plan was to have a second surgery this fall to get the rest out. The tumor was suppose to be a very slow growing one. Well it has completely grown back to its original size. Surgery now has to happen soon because of its rapid regrowth. He is confident that he will get it this time, if not however we will have to give radiation a try. Needless to say I'm a bit overwhelmed. It ruined a nice afternoon we had planned in Inner Harbor. Damn tumors anyways. I just got back from our five hour drive home and I logged on right here. My family is very supportive but this site does wonders for my stress levels. I don't post much but I do "lurk" around alot.
I do have some questions and will be researching them but if anybody has some answers or guidance i'm a listening.
My symptoms this time are in different then they were last year. Is this common? Last year it was in my legs (sensitivity to temps, weakness, tingling) and my right arm (weakness).
Now I haven't lost any strength but my right arm is freezing and feels asleep. my skin on my right side feels funny. sorry funny is the best way to describe it. I also have some balance issues.
Has anyone had a tumor regrow that fast? Within one year, actually my MRI in October was good.
What about radiation? I think that scares me more than the surgery.
oh by the way the tumor is not inside my cord. It is stuck pretty good to it and to some major artery at the the c-2 to c-4 region.
well thanks if not for anything else but listening.

[8338]

Robby,
What I want to know is what kind of tumor do you have? Also, as I just read in the other post, don't wait too long to experience any other loss of sensation etc. because what you go in to surgery with is usually what you come out with. Stay with us guy, we're all here for you :-)
Barb

[robby]

Its a solitary fibrous tumor. It is benign. Dr. Jallo reassured me that it was benign. I am in my fear about that though. Too much internet. I would have preferred to have been hospitalized yesterday and have surgery soon. I hate waiting. I had myself all prepared for a fall surgery and was not worried. Well not obsessively worried like I tend to get. Now with the regrowth...
I just emailed Dr. Jallo to see if we could do surgery sooner. At the visit yesterday he said it should be done in the next month and half. So I am asking to have it sooner rather than later. I know in my original post, yesterday, I said it was radiation that scares me. Actually its the regrowth. I am confident about surgery and possible radiation. The quick regrowth has me upset. I am really trying to be strong for my family. well, thanks again for listening.

[susan]

I'll keep you in my thoughts and prayers. Hopefully you'll get surgery sooner than later (to cut done on the pre-op anxiety while waiting). You really can't get on with your life until the surgery is done.
I am under surveillance too, getting 6 month MRIs. My tumor has a high recurrance rate. I hope I never get that bad news again.

Susan

[qhcrazy]

I am so sorry to hear about your regrowth, I know it's not at all what anyone wants to hear. We are all definitely here for you and feel your pain!!!! I hope you can have your surgery soon and can recover quickly. Keep us posted on what Dr. Jallo says.

[Joel]

Look, your tumor DID come back already, so what's done is done, so no sense worrying about that now, right? AND, you're in the best hands there are--Jallo's, right? So, get on with the surgery, do it as soon as possible, and don't worry about the radiation yet, because that is still something that may not happen...One thing at a time. Good luck, Robby.

[robby]

alrighty then.
thanks and sorry
rob

[robby]

surgery is set for Aug 29th. My daughter starts kindergarten Sept 3. I am setting my intention to be home for it but if not there is always the video camera, I guess. I want to thank you for the kind words and wisdom during my melt down. I have leveled off. I think!

[JoAnne in Arizona]

Robby, I am scheduled to have surgery w/Dr. Jallo on Sept. 10. This is my first surgery. Guess you will be home by the time I get there on the 8th. My thoughts and prayers are with you!

JoAnne

[robby]

Hi JoAnne, The staff at Johns Hopkins are wonderful as is Dr. Jallo. You will be well cared for. I will be thinking of you and praying for you as well. It would have been pretty cool if we would have been there at the same time. Have a safe trip.