This is my first post here:
Just a brief history first;
In 2008 I was diagnosed with a brain tumor on the left cerebellar hemisphere. I was operated on to remove it, but although the op went OK, the surgeon said that they could only get 80% as they were unsure as to what was tumor and what was me. After tests on what they got it was identified as an astrocytoma grade 2 and it should not give me anymore trouble. However within 2 months it was back and causing trouble, so it was decided to operate again which is what happened. An additional course of radiotherapy was also given. Within 6 months it was back and because of where it was it was decided to operate again. Since then I have had regular scans which no further growth was seen. These have now been lengthened to yearly, which I have taken as being very positive
During this time ( 2 and a half years ) I have seen little improvement with regards my symptoms. I am still very dizzy, my balance is not good and my eyes have difficulty working as a pair, however I have come to accept that and hope things might improve over time. Throughout this time I have been aware of a slow but steady increase of my symptoms. Just recently my speach has become slurred and my balance has become particularly bad, but I do not feel as if the tumor has returned and recent scans have been good. The experts are unwilling to tell me what I can expect or even offer an explanasion for this increase in symptoms
Is there anyone out there who has had similar experiences or can offer some kind of diagnosis or advice. Does it have to get worse to get better?
Have the doctors considered other illnesses that may be contributing to your symptoms? It is not unheard of to have a tumor and unrelated neurological or autoimmune problem. Just a thought, and hopefully not the case.
Another thought I had was that it may be due to scar tissue building. My surgery was recent, so I don't have first hand experience, but I often read online people reporting that as the years go on and scar tissue builds, some symptoms worsen.
When was your last scan? Just because the tumor behaved itself for 2 years does not mean that it won't hit another growth spurt. If I were you, I would insist on another scan just to be sure. Hoping you have no growth!
My last scan was back in March hat was fine. I think that scar tissue is most likely. There was evidence of a 'hole ' where the tumor had been, which over time would probably get repaired. This might be the cause,but I think I will wait until the new year and see what happens. my next scan is March and I don't want to press the alarm bitton just now especially as I don't feel too bad. Thanks for your comments and interest
I know you don't feel too bad yet, but with a gradual increase in residual symptoms and the recent emergence of new neurological symptoms, I would request seeing a doctor or getting a scan sooner. a LOT can happen in 5 months. If there is new growth, waiting 5 months can make the difference between operable or treatable and not (of course depending on location and type of tumor). It can also make a profound difference in quality of life. For example, with new balance issues, you could have an accident and harm yourself or others. You could develop seizures and not be allowed to drive for at least 6 months.
You were concerned enough to come on to a forum, list your symptoms, and seek advice. Something in your gut is telling you something may be wrong, and given your history you have justifiable reason to be concerned. Of course, it may just be from radiation or scar tissue. But the risks of not following up are too big.
It also occurred to me that scar tissue would probably just cause the gradual increase in old symptoms and not the new ones. The new ones could be explained by edema from the radiation, but that would also require you to go see a doctor or get a scan.
Well, I can understand why one would want to suffer. It's easier than dealing with the thought that it may be growing. I am going through the same thing myself... but have decided to take my own advice. In fact, I found reading the advice I gave to be ironic considering I wrestled with a similar issue for weeks. But I have decided it's better to get answers now even if it may not be the answers I want. Otherwise the anxiety of the unknown would be unmanageable.
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