|
Post by stevieray on Apr 12, 2010 20:48:20 GMT -6
Nick,
When you search make sure the time frame goes all the way back, the default I think is 30 days or something short. I know I have posted on this subject and am comfortable talking about it, although with discretion due to others sensibilities and children may be reading. I had similar issues with lack of sensation which got much better with time, thank GOD!
Steve
|
|
|
Post by Todd on Apr 13, 2010 7:41:04 GMT -6
Scared, one thing, don't let the docs talk you into a biopsy as a seperate surgery. this is futile and may result in 2 surgeries instead of 1, which is not good practice. If they feel it needs to come out, then do it all at once. take it out and biopsy it then. 1 surgery, not 2.
see as many docs as you can until you get more comfortable with one of them. definitely send your scans to Jallo, he's a great resource and seems to be a very compassionate dr. to take on so many non-paid consults. everyone on this board loves him.
hang tight and don't let the docs push you into making a decision. if you want to wait, then wait, ask us questions. The key is not to act quickly unless your symptoms demand it.
|
|
|
Post by scared on Apr 13, 2010 10:01:40 GMT -6
Dear Betty, Steve and tgratehouse, Thanks so much for your support. It feels good to talk to people who really understand. My NS did say if I had the surgery it would be then that the biopsy would be done. Not before. Because a biopsy is a surgery. Also, he is not pushing me to do anything. He just wants to keep a close eye on it if I choose not to do surgery now. I've tried to find a way to contact Dr. Jallo but can't seem to find where it's located. If someone could give me that information I'd really appreciate it. Thank you. Scared
|
|
|
Post by tc on Apr 13, 2010 11:09:56 GMT -6
|
|
|
Post by scared on Apr 13, 2010 17:02:28 GMT -6
Dear Teresa, Many thanks for the info. I sent an email to Dr. Jallo right after I read your post. I expected an answer maybe in a week. I received one less than 2 hours later. WOW!!!! He's won me over already. Thank you again. Scared
|
|
|
Post by Tmasgio on Apr 13, 2010 18:22:23 GMT -6
The 17 yr old they mention in the second article actually lives here in St. Louis and his mom contacted me in 08. They removed his tumor and he is going to college and from what I can tell leading a normal life. I am sure he has his issues but youth does have a hug advantage.
|
|
|
Post by betty on Apr 13, 2010 20:52:49 GMT -6
Hi Scared......(I hope that name will soon change to........well informed) lol SO glad Dr Jallo responded. Let us know his opinion. Betty
|
|
Nick
Full Member
Posts: 26
|
Post by Nick on Apr 15, 2010 15:03:43 GMT -6
I get in to see the NS today; I went with a structured list of questions. He has done hundreds of resections and his name is Dr. Kevin Morrill at UT Southwestern Medical Center in Dallas. He believes it is an ependy due to the well structured delineation between it and the surrounding cord tissue. I agree from what I have been able to learn. The symptoms I have are from the herniated disc at C5-6, the tumor would cause problems in my legs and my gate. He finds my case interesting in that it is the first he’s seen in which the tumor was asymptomatic.
The tactic for treatment is to see oncologist although he felt it wasn’t necessary but was more for my peace of mind. I will return for a follow up MRI in 6 weeks to see what the little guy is doing in there, is he coexisting peacefully or making trouble. Any growth or symptoms and that would be cause to begin to think about resection. I am to let him know right away if I begin to feel any symptoms in my legs.
Removing this ependy has a higher risk of post surgical deficits to its being small which means more cord tissue would be cut to get access.
For the most part what I was told by Dr Jallo was the same thing, get a look at it in 6 weeks and see what it’s doing. If symptoms or growth are present, surgery would be indicated.
What I find interesting is that these guys can live in there for a long time and we never know it. My question to everyone today is how many have their tumors coexisting peacefully and not making trouble and for how long?
From what I have read here there is not many.
|
|
|
Post by Todd on Apr 15, 2010 18:21:53 GMT -6
Nick, you don't know how interesting that is. makes me wonder about how common the coexistence of tumor is with a disc problem in the area as well. What you described is exactly my story.
I had some weakness in my legs (my tumor was at C7 and it was big, filling up my entire cord at C7 about an inch long). Not anything really big but I also had some tingling in my fingers in the mornings only. When I went in to see the NS, he said the tumor was causing the weak legs but I had a bulging disc at C6 and this was causing my tingling.
Bob, another C7 ependy member pre-op and waiting, also had tingling with a bulging disc.
look down in my signature and check out my MRI scans. you can see the bulging disc that was causing the tingling right above the tumor.
good thing you found this out nick. wait. if the tumor isn't causing any problems, wait. you will have problems when they take it out. that's a for certain.
todd
|
|
|
Post by tc on Apr 15, 2010 23:03:29 GMT -6
What I find interesting is that these guys can live in there for a long time and we never know it. My question to everyone today is how many have their tumors coexisting peacefully and not making trouble and for how long? From what I have read here there is not many. I have been in the "watch & wait" category since June 2007. I wish I could say that I'm symptom-free, but that is not the case. However, I haven't really gotten any worse. Recently I was given my whole neurology record to hand carry to another appointment. Of course, I read it all. I was surprised that my current complaints were exactly the same things I was complaining about when this all began. There isn't a day or hour that I'm not reminded about this tumor by some pain, buzzing, weakness, stiffness, numbness, clumsiness or just general fatigue. There are probably many symptom-free people out there, but they probably don't even know they have a tumor yet (so they don't post here ;D). Teresa
|
|