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Brain Tumors and/or Brain Surgery and MG
I have had MG since about 2002/2003. I had a thymectomy in 2009. I test negative to all blood tests so far except one time, I had one positive Achr. SFEMGs are pretty much always negative. I do not take medications because for now I am being treated like I do not have MG despite having had a thymectomy. The no MG attitude has been since I have had a new specialist, the amazing one moved out of state. I have had several exacerbations over the years but I recover quickly, most of the time, so they say I have anxiety, etc. Before surgeries I have plasma exchange and still have trouble after. Also my thymus was quite large. I seem to be very sensitive to meds with a long list of allergies as well. So just wanted to start with some background on me...
I have recently had some different migraines. MRI of brain shows two tumors on my pineal gland. Also a chiari malformation. I will be having brain surgery next month and I am trying to find examples of MG patients who have either had brain tumors or surgery. So far no luck. Because I am so abnormal in so many ways and the new neuro-muscular specialist insists I do not have MG I am more worried then I normally would be. I tried to change specialists after the first time seeing her and was told I was not allowed to do that. I am still getting told that. :mad: So if anyone has any insight in what to do there I would be so appreciative. I have to use someone from that office because I have to have surgery at OHSU, it's the only place in Oregon equipped to handle this surgery and the plasma exchange. So basically if anyone who can give me a place to look for MG and brain tumors and/or surgery info would be, that would be great! Also chemo and MG would be helpful. I do not know yet if the tumors are cancerous but my symptoms are troublesome. THANKS tons!!! |
Wow, that's a lot to learn about your health!
First, these doctors should know that one positive MG antibody test is still a positive antibody test! And antibody levels fluctuate. Have you consulted with an endocrinologist? If not, that should be your next step. They are the experts when it comes to pituitary tumors. According to Mayo, treatment, not surgery, could be the next step (depending upon size/location of the tumor, etc.). http://www.mayoclinic.org/diseases-c...n/con-20028814 http://www.cancer.org/cancer/pituita...ituitary-tumor Brain surgery can be problematic for someone with Chiari. If it were me, I'd want a super expert—such as can be found at the Mayo Clinic—to assess my situation! I don't know what your finances are, etc., but it's your life and you deserve to have the best answers. I'm assuming that they've discussed surgery with you? Do they intend to do the usual go through the nose pituitary surgery? The Chiari Malformation could be to blame for a number of symptoms. Did anyone sit down and talk to you about that or did they just say, "Hey, you have this really weird thing in your head." ;) http://www.chiariinstitute.com/chiari_malformation.html http://www.mayoclinic.org/diseases-c...n/con-20031115 I tend to forget about Chiari and how it can cause weakness, too. Did they say if these tumors are malignant? Life threatening? What exactly did they tell you?! At least get a second opinion from an endocrinologist (hopefully not in the same HMO or group). And it wouldn't hurt to make a couple of phone calls to people who deal with Chiari to get some more information. Did they classify which type you had? I can almost hear the doctors saying, "She has these two conditions, so she probably doesn't have MG, too. Let's wait until the tumors are out to see if she's better." When it comes to the brain, even a third opinion (or more) might be a very smart thing to do! If your insurance company is restricting you, then call them! Ask what your options are as far as seeking out an opinion elsewhere. I'm really sorry you are facing all of this. Do you have a good support system? This is a pretty daunting experience, so I hope that you do. Pituitary brain surgery can be fairly straightforward, but you have complicating factors that should be taken seriously. And don't forget that not all doctors know all things! They are specialists and may not know enough about the other conditions. What you need is a team. What else can we do to help? Just think through the situation, write down a lot of questions, and find some more help. :grouphug: Annie |
Hi Annie,
They are not able to do surgery through the nose on me because the space between one side of my brain and the other is too small. The doctor said it had to be open brain surgery. As to the tumors they do not yet know if they are malignant or benign. That's why he said I need to have them removed to biopsy them. He did say they did not appear to be very aggressive, so that was good news. I was able to talk to my neuro doctor and she wants to see me ASAP to see how the weakness is. But she was very reassuring about not treating me like I do not have MG. I saw an endocrinologist about a year and a half ago for hyperparathyroidism. He pretty much made a lot of assumptions, real surprise, and insisted it would resolve itself. I really have no idea if it ever did. I am pretty sure I would know by now if not. My neurosurgeon is supposed to be the best around and I really liked him. He did somewhat explain the Chiari Malformation but I did find more info online. I really appreciate all the links for more reading! He also said that I can email him with questions at anytime. My biggest question is still if there is any info out there on MG and brain surgery/tumors. I would just really like to know what to expect because of that complication. I will try to post updates when I can. :grouphug: |
Also it would help to know what kinds of questions I should be asking my neurosurgeon.....
Thanks for your help!! |
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