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Post by WyattJennifer on Jun 2, 2008 11:10:47 GMT -6
Hello,
As I mentioned before on the forum, one of Wyatt's (2y/o) newest symptoms is squinting his eyes often and rubbing them saying they hurt. When I mentioned this to the Dr.s Nurse she said " eye symptoms usually are related to brain tumors not spinal cord tumors". I guess that was suppose to bring me relief, well it did the exact opposite, I have been worried sick! Especially since Wyatt's tumor is so close to his brain stem. Ganglioglioma are usually found in the brain (10% of them) and spinal cord only 1%. So have any of you heard of a tumor in the spinal cord spreading to the brain? He goes for his M.R.I and follow up tomorrow, so I will have many questions to ask, but I am curious if anyone has heard for this occurrence.
Thanks so much
Jennifer
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Post by bethann on Jun 2, 2008 11:20:58 GMT -6
Jennifer,
Has Wyatt ever had an MRI of his brain? I would hope the Dr's have thought of that and he has had one. If not I would make sure he has one soon it would be great if they could just do the brain tomorrow when he has the other... I would ask them to please one of the brain also! That way if it was clear you can relax knowing it has not spread to the brain.
Beth
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Post by Vanessa on Jun 3, 2008 9:10:37 GMT -6
Jennifer, I hope all goes well with Wyatt's MRI today, I know how nerve wracking it is. I hope they order the MRI of the brain as well. In our son's case, the surgeon ordered an MRI of his brain a few days before the surgery just to make sure there was nothing there. I hope you get some answers today as to his symptoms. God bless, Vanessa
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Post by msweeney on Jun 3, 2008 12:45:16 GMT -6
Jennifer:
The most common intramedullary spinal cord tumors include astrocytomas, ependymomas and hemangioblastomas. I am not familiar with gangliogliomas. I think they are more common as spinal cord tumors in children then they are in adults. Normally when questions deal with the more common types of tumors there are more responses from members and I think that may be why there have been fewer responses to your question.
So my remarks are more general remarks. Do you feel confident in the doctor you are seeing for Wyatt's tumor? Do you feel like you have the ability to discuss and get your questions answered in a reasonable fashion? If not have you considered sending his films to Dr. Jallo for a second opinion? Dr. Jallo is well know to many of us on this forum and is a leading expert on spinal cord tumors.
I really want to express my sympathy for your situation. It is hard enough for those of us who have dealt with this process. To try to stay on top of symptoms with Wyatt at two years of age would be daunting. So I would think you are right to explore what Wyatt is trying to tell you about his physical state. Some of it may be helpful for the physicians and may be symptomatic of the tumor. Other things may not be but how will you know if you don't bring it to the physicians attention. I am hoping that today's appointment will answer many questions for you.
Finally, I want you to know that I will say a prayer for both you and Wyatt and your family. I'll pray for your strength and for Wyatt's wellbeing. As hard as this is, it sounds like you are doing a good job of advocating for Wyatt. Know that this process, no matter the type of tumor, has some unknowns and that is the hell of it. It can be like an onion, you peel back one layer only to reveal another and it can take time. So I'll pray for your patience as well. God bless you and Wyatt!
Matt
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Post by Vanessa on Jun 12, 2008 7:07:56 GMT -6
Hi Jennifer,
How did it go with Wyatt's MRI? I hope all is well.
Vanessa
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Post by Wyatt Jennifer on Jun 13, 2008 7:30:31 GMT -6
Thanks for asking, it seemed to have gone well, aside from the fact that he screamed until he was put under, poor little guy.
The Dr. here in Michigan thought that there did not seem to be much growth, if any. So I FWD. the M.R.I's and his history to DR. Jallo, he does see new growth?! Both Dr.s agreed to wait until Aug. and get another M.R.I then.I asked about the chances of it going to the brain, they both said it is possible, but rare. Rare is no comfort in our situations is it? I know I shouldn't let my mind go there, but it is so scary!!
How are you holding up Vanessa?
Please e mail anytime if you want to discuss things in more detail.
FJenifr@aol.com
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Post by msweeney on Jun 13, 2008 12:36:47 GMT -6
Jennifer:
I am glad you were able to get Dr. Jallo's input. It doesn't sound like it made things any clearer but at least you now know that the course you are taking seems to be the right course. And what does that do for you? I am hoping it takes away that part of worry that wakes you up in wee hours of the morning making you second guess if everything is being done medically for Wyatt that can be done.
Of course what remains are all of the things that you can't control, like the rare chance that the tumor could spread or how fast the tumor grows. I think living life fully with major uncertainties is one of the hardest things we can do as humans. It seems so logical that we should put away things that we can't control and only deal with things that we can control. But living that out is far more difficult. So my heart goes out to you, trying to be the best mom that you can be and also the advocate for Wyatt. My hope is that the uncertainties clear and that you can do what so many of us parents take for granted and that is to be fully engaged in life with your son and family and not have to worry about tumors and such. One thing we learn from these tumors is that life is precious and beautiful and that we never get enough of it. Jennifer, God bless and keep you and Wyatt and grant you the peace and serenity to live the life you want.
Matt
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Post by Vanessa on Jun 16, 2008 15:57:07 GMT -6
Hi Jennifer,
I'm glad you got the 2nd opinion from Dr. Jallo. Sometimes the waiting is really hard and scary, but we have no choice. Definately try to focus on the positive, that's what I keep telling myself. I'll definately write to you via email. take care, Vanessa
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Post by Joel on Jun 17, 2008 3:11:49 GMT -6
So--there was no MRI of the brain performed? Since both NS admit there is a chance of it spreading to the brain, why was this not done? I think it is time to insist on this.
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Post by Wyatt Jennifer on Jun 17, 2008 6:48:00 GMT -6
Thanks to you all for your kind responses.
The support in this site, has been so helpful to me.
They ordered another M.R.I of the entire spinal cord and brain for Aug. Wyatt's NS here in Michigan, said he does not feel it has gone to the brain, but will order a scan to be safe. Maybe it is just me be the worrying mom, that I am?
I feel so UN-easy about it, do you think I should push for it sooner?
Take Care.
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