So on Friday I had my MRI and meet with the doctor.
He said there is no change and and there was swelling in the area. HMMM then he said he was going to keep an eye on this swelling. Then he said he would see me in a year and a half. HOW IS HE GOING TO KEEP AN EYE ON IT WHEN HE IS NOT GOING TO SEE ME FOR ANOTHER YEAR AND A HALF.
Then he says if your balence gets worse to call him and he would put me on steriods. So basically, this freaked me out. I just feel like something should have been done.
I also told him I was still having horrible headaches daily and still had a wide array of symptoms. I still have the tremor. I just DO NOT feel well. I am not on any medications for anything. So basically I feel like I am just suppose to feel like crap for the rest of my life.
But of course nothing was done I was just sent on my merry way.
So should I be worried about this swelling…
Sorry for the ranting, but noone else even understands what I am talking about.
I’d think that any time you have a combination of swelling, tremors, and headaches the doctor should be doing SOMETHING. Especially somehting more than an MRI very 18 months. I don’t know what the availability is to you, but I’d seriously consider getting a second opinion if at all possible.
The first surgeon I saw when I was first diagnosed with an AVM did pretty much what your doctor wants to do, only he did an MRI every few months over the spn of a year and gave me some steroids to reduce swelling. After a year he said that I should be OK. I was OK for a couple of years, but then I started having simple partial seizures and more headaches. I had one pretty significant seizure late one night, my wife took me to the ER and I spent a week in the hospital. Next surgeon says he wants to medicate, but not operate. Then he says he wants to install a shunt to help with the swelling. I asked to be sent to another surgeon. This guy wanted to operate if at all possible because AVMs are not something to take lightly. Based on the MRIs and angiograms, he thought we were dealing with the veinous end of a malformed capillary system, it was not an ‘immediate’ risk and he let me go ahead and have our wedding (which had already been planned) and scheduled the surgery for a month after. Well, during the surgery, he found that the AVM was being fed by capillaries, but a pretty hefty artery. Apparently if he had realized this earlier, he would have operated right away… Wedding or no wedding!
The doc you are describing sounds like the first guy that I saw. He didn’t see any bleeding at the moment, so I must have been OK, right? It just goes to show that even though someone may have earned the title of “Doctor” or “Surgeon,” they may not have a clue.
So Kristynn! I TOTALLY understand your frustration. You had radiation to your brain, you’ve just been told that you have brain swelling and then they say, “we’ll see you in a year and a half”!?!?!? and so you are supposed to go back to leading your “normal life” (whatever that is) GRRRRR!!!
I would be worried too!!! It’s so crazy and I struggle with that part of this situation so much! I just constantly bury my feelings of fear and uncertainty about my son but sometimes they creep up on me and I just lose it so it is no wonder to me that you are ranting! And that’s what this group is for!
I personally, would say that you should phone your doctor and ask what other symptoms you should be watching for if the swelling gets worse??
And it sounds like you should be trying something for these headaches too! Do you take someone with you to these appts?? Sometimes it’s easier for someone else to be demanding when you, yourself are not feeling too good or strong.
I’m sorry this is all happening to you Kristynn!!!
hay mate,
you have every right to be ranting…have you thought about getting some other opinions??? i think it would be a good choice…i really don’t know much about the sweeling so i can’t help you out there…rest up and take care
Hi Kristynn, I know exactly how you feel. I also had problems with swelling, headaches, dizziness, tremors, etc. I never distance myself from doctors, because when I do have a problem, I take notice and if a particular doc seems like he’s not doing or treating me like I think he shoud… then I know I can go to another doc. There’s is something wrong with you if you’re dizzy, having tremors and swelling. kristynn I felt like crap for about 5-7yrs after surgery and most of those years I was in intense severe pain in my head. I was taking all kind of meds, but they didn’t work on me for some reason. One of the neurologist here refered me to the mayo clinic in Michigan. I stayed for about a month and I am better, but I still have headaches a lot, just not as severe. If you need to Kristynn write, things you would like to talk to your doc about, before your go to your appt. If he’s willing to sit down and talk to you about your concerns then that’s good, if not then you better “drop that zero and get yourself a hero” LOL This quote is from an old song. Well Good Luck Kristynn!!!