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Discussion Starter #1
Hi Everyone,

I saw my Neuro last Thursday. I took my own copy of my last M.R.I results, that I requested. I asked my Neuro, to explain the results to me, in terms that I could understand.

He told me that I have a pea size tumor in my brain. Basically, where my temple is.. but, really deep. I have seisures, but knew that already.
I have another M.R.I. and an E.E.G. schedualed next week.

My Neuro, said he would repeat the M.R.I. again in six mos. and if the tumor has not grown, then again, in one years time.

I had an M.R.I. (my first), done by another Neuro my G.P. recommended to me, and she never mentioned this tumor to me at that time..(2004).

My Rhuemy, is the Dr. that recommended this Neuro, as he was not confident about the Neuro my G.P. recommended. Anyway, My current Neuro told me that he thought the tumor was in my brain at the time the first M.R.I. was done, in 2004..that it just didn't show up. Does, that make good sense to you? I am confused, by that statement.

I have no idea if this is standard protocol for my situation. I have felt better lately, on the Valporic Acid, both mentally and physically. I think I have been on the Cell Cept long enough, to say that I am sure it is helping me, also.

I didn't think to ask my Neuro, if the E.E.G will show an accurate reading since I am on Valporic Acid and Neurontin..also.

I wrote it down, but sometimes, Drs. overlook some of the paperwork. we fill out..once we start conversing.

I hope everyone feeling poorly now, feels much better tomorrow..:)

Thank You For Your Caring Replies..
Love,
Sandy
 

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Sandy I am glad you are feeling some of the positive effects of the cellcept. I am sorry about the tumor, but it sounds like they are watching it carefully and taking good care of you.

I can understand how the tumor may not have shown in the first MRI, it could have been occluded by something, the position you were in during the MRI, the way the pathologist read it, many reasons...too ad you new Neuro can't get the original film and compare them.

I will keep my finger/toes crossed and pray that you reaminwell.

Love Stephanie
 

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Hello Sandy,
I am wondering if you feel a little bit invaded? I do even if I get a splinter or something in my eye,so I admire you for coping with this.
Can I do anything at all to help.
My Son has an irregular patch in his brain but nobody really knows the significance and it doesn't seem to affect him.
x Lola
 

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Sandy,

I can understand why he would say that about the tumor already being there in 2004. Let me give you an example by xrays I had of my hands. In February 2003 and then in May 2003 I had xrays of my hands taken. I had just come out of remission and both doctors were looking for evidence of RA. The first time they were read and came back normal. The person who read that set of xrays was a radiologist. The person who read the 2nd set was my Rheumatologist. My rheumy found evidence of old RA damage. Sometimes a specialist will know what to look for that a Radiologist will overlook.

It sounds like you are in good hands now and hopefully that is helpng you feel more secure.

Take care,
Karen
 

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((((((Sandy))))))

I am so glad you are feeling better but this news must have been quite a shock for you. You did the right thing in asking your neuro to explain it to you in terms you understand. It can be a daunting thing to do so well done! :foryou:

Sending you positive thoughts for your tests next week, I hope all goes well. :pixiedust:

Lots'a'luv,

Pam xxx
 

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Hi Sandy,

I'm glad you were able to get the scans from your previous MRI, they are very important as far as comparison goes. Karen is right in that it's who looks at any scans that matter, because they know your history, your ailments and your symptoms better than any radiologist who is reading them. The treating doctor should ALWAYS interpet the scans, either your old neuro didn't interpet them well, or he didnt look at them and relied on the radiologists interpetation, or that tumour was not that obvious on the scan at the time.

It sounds like this doc is a keeper, I just wanted to wish you luck with your next scan and to say I think this guys plan of action sounds like a good one!

love
Lily
 

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Dear Sandy

I just want to let you know that i am thinking about you and hoping everything turns out okay next week with your test.I wish i had some good advice for you but you already got some wonderful advice and a heck of a lot of people that care about you (((((hugs)))))and are here for you also.Take care and please let us know how things go next week.

Tammy:)
 

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Hi Sandy,

It sounds like you have an excellent doctor.:)
I don't have any advice to give. Just wanted you to know you have my support and my prayers.

I am so happy that the Cell Cept is working for you.:yahoo:

Take care.
Love,
Lyn
 

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Discussion Starter #9
Hi Everyone,

Thank you, for your kind and concerned, replies to my post. You were very helpful to me.
I do think, I have a good Neuro, this time around.

He will be watching the tumor closely, for the next couple of years..Oddly enough, I haven't thought a lot about it.

I have so many ailments, at this point, that I only deal with each day as it comes..Some days, are better than others, but I try to be thankful for each day..

Hopefully, this pea sized tumor..will not grow. If it does grow..hopefully, it will be very..very slowly.

I have an appt. with my Rheumy next week, and have a feeling he will increase my Cell Cept. I am so thankful it has helped me..Thank all that is good, for modern medicine..:)



Thank You All Again.

Love,
Sandy
 

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Hi sandy

I'm sorry I don't have any advice but I just wanted to send you a big hug :hug: & my best wishes.

I will pray the tumor stays very small for you & I am glad you are in safe hands.

I'm so pleased the valporic & cell cept is helping you,long may that continue.

take good care sandy,I admire your calmness & positivity :)
luv karen x
 

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Hi Sandy,:there:
Is this pea sized tumor the cause of your seizures and what type of seizures do you have? You are coping with this news very well:yes: Can this tumor cause any other problems that you should be aware of? I am glad you like your neuro-I am seeing my 2nd one this next week. Was not real fond of the 1st one. Keep us posted.:)


Hugs,
Becca
 

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Discussion Starter #12
Hi Becca,

You know, I have never asked what kind of seizures I have. I suspect they are simple partial. I am having another E.E.G. soon..and another M.R.I. in early April. I will ask my neuro that info, when I go in, for my follow up appt. I was told by my first neuro that the seizures were caused by by my c.n.s. lupus complications.

My husband went in to see our G.P. for his follow up after some pulmonary testing..He asked our G.P. about my tumor. Our, G.P. told my husband that my tumor is very deep, and that it is inoperable. He said that it would be way to dangerous to try to remove it.

I will post when I find out more..from my next Neuro appt. Thank you all for your kind concern. :)

Love,
Sandy
 
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