[Sage Hen]

Hi Friends,

I saw the Neurosurgeon on Friday, the 2nd. He didn't agree with the Neurologist...that, I have a glial tumor.

He said I have an abnormality, but couldn't say what it is.

He said, that it is at the top of my brain stem in the ( Thalamus).

He said, that most often children get children get glial tumors.

He said, I should have an M.R.I. in a year.

I would like your opinions regarding this matter. You have all been so helpful in the past.

I know, I need to get a second opinion. But from whom? Another Neurosurgeon or another Neurologist?

My Neurologist, based his diagnosis on the radiologist's findings from the Cleaveland Clinic, here in the U.S.

Thank You Very Much..

Love
Sandy

 

[keebler]

Sandy,

I think you should get a second opinion especially since you are still having symptons.:hug:

Will this neurosurgeon send a report to your neurologist? I think I might talk to your neurologist on how your visit went with the neurosurgeon.

I am sorry I am not much help. Hopefully someone will come along and help you better.

Take care my friend.
Love,
Lyn

 

[Sage Hen]

Hi Lyn..

Yes, the surgeon will send a report to my neuro. I saw that I got a call from the Rheumy's office this Friday. No message.

I will call them back tomorrow. It may be a reminder that it is time, for a blood draw for the CellCept I take..I forgot!

My husband, and I are both thinking..It is time to seek help, outside of Idaho.

The surgeon was a likable fellow..so is my neuro for that matter! I am just befuddled over what to make of these issues. How can drs. be so different in a diagnosis? C.N.S. Lupus vs Tumor?

Anyway, I will call and set up an appt. with my Neuro to get results of my E.E.G., also. Although..I am having doubts, as to weather, I will learn anything, or if I do, if it will stick!

I was much relieved to hear, I didn't have a glial tumor, but what IF he is wrong? He did say, they couldn't remove it anyway..So, I ask myself, if I should even pursue it...

I have the option of going up on my CellCept to 2000 mgs daily. I am thinking, after this blood draw..I will go up and see, if my headache clears up totally...Just a thought.

I do find it odd, that the CellCept has helped my headaches, if the cause of them is the tumor.

I mean, what are the odds that I would have both, a tumor and C.N.S. Lupus?

Somebody is just plain wrong...If you ask me, which you didn't...LOL

Thank you for your reply dear friend...

Love,
Sandy

 

[neongirl]

Wow! Talk about two differing opinions. I think I would see another neurosurgeon, maybe search for a while on the web and find someone who treats a lot of these glial tumors, someone used to seeing them on MRI etc.. Maybe then you could get a definitive answer as to what it is. Upping the cell-cept after your blood tests sounds like a reasonable test. Wishing you all the best.

 

[mysharonna]

Hi Sandy,

I am so sorry for all you are going through...what a scary and frustrating time for you. I cant offer much advice although I would certainly get a second.. if not a third opinion. I would take all your test results and see another neurosurgeon, possibly outside of where you live as you suggested. I say surgeon, because well, they are the ones who operate on and actually see these types of tumors and can better diagnose, one would think.

Sending ((hugs)) and healing prayers your way...hope you have some answers soon that you can feel confident about.

Sharon

 

[Lily]

Hi Sandy (((((hugs)))))))

I agree with the others about getting another opinion from a Neurosurgeon to set your mind at ease or at least a very prominent Neuro who is used to reading MRI's for himself. If for no other reason than this:

My Neurologist, based his diagnosis on the radiologist's findings from the Cleaveland Clinic, here in the U.S.

After my diagnosis of CNSV I was followed with yearly MRI's and I had had some symptoms so they scheduled another one. Unbeknown to me at the time (just as well ) the Radiologist at the University Teaching Hospital sent a report and the films back to my Prof of Neuro at the same hospital. The Radiologist said that my condition had progressed to involve other parts of my brain etc. etc. When my Neuro looked at the films (not just the report) he doubted this. So he called in an expert Radiologist to see what he thought. Apparently this guy is top of his field and used to looking at all sorts of Neuro-radiology. He agreed with the Neuro and disagreed with the first Radiologist - there was no progression! So yes, they can differ vastly in what they think, especially if they haven't seen a lot of it.

It's so important to look and decipher films themselves, not just go on what some Radiologist says. That much I've learned and it's not the first instance I've stated above.

I hope you can find a good team and also get a hold of your actual films to take with you.

love
Lily

 

[elisabethm]

Hi Sandy is there ever two doctors that agree on any thing it is hard enough to think that we are being treated correctly.Then you go to see another doc and then they cant decide which one is right and which one do you take the advice from no wonder there are some of us on the site that are glad that we can ask for advice on things that others have been through. I do hope you get some one that can give the right answer Best Wishes Elisabeth

 

[florie]

Sandy,
I am so sorry to hear about what you are going threw. I hope you can find a specialist even if it's away from where you live,as you had mentioned.
I agree with everyone else, get other opinions. I will pray that it all works out and you get a right answer.
hugs, florie

 

[macfamily53]

Dear Sandy

I am so sorry to hear that you are going through s0 much((((hugs)))).I wish i had some sdvice for you but you have already gotten so much wonderful advice already.I just want to let you know that i am thinking about you and pray that you find a wonderful doctors that know a lot about this stuff((((hugs)))),Please let us know how it goes with finding a new doctor and what the prognosis is.I just cannot imagine what you are going through but jsut know we are all hear fro you to support you and listen to you.

Tammy

 

[deNile]

find another neurosugeon

Hi Sandy,
I didn't catch that the guy said most glial tumors are in kids. If that is the basis of his opinion find another doc. First of all you are not most person you are one person and may be the exception to the rule. They are telling me I most likely have had my tumor since I was a child. It is possible you are the same way. Second of all there are definately adult gliomas out there. I know I hit more than one site or clinical trial or so forth about it. The brain tumor society has web sites just like lupus does that lists docs that specialise in brain tumors by state and city. As I pull it together I'll get you some of my research. The truth is that the surgeon won't give you anything except the word abnormal unless a biopsy is done. They told me I have an abnormality that acts like glioma, but they will not say that it is a glioma without the biopsy which would be dangerous.
Personally I think my lupus diagnosis and the glioma are very connected, most likely on a cellular level but medical science has not caught up enough to figure out how. Ofcourse I have no medical degree and very litlle to base it off of.
Sherry

 

[Sage Hen]

Sherry,

Thank You, for your insights. You have been very helpful to me. I have felt a bit lost lately, not knowing which way to go..In the end, deciding to take a mental break from pondering "it". for now, anyway.

I believe, your right.. in that glioma, and Lupus are related..because, I read on one site that, glioma's are a tumor of the connective tissue of the brain.

It makes sense in that respect, but I, like you can only draw my layman's opinion..not, based on any education regarding the issue.

Thank you again, friend.
:rose3: Sandy