Tuesday, July 19, 2011

One Day at a Time

The next time I have potential Gamma Knife damage on a huge area of my brain, remind me to see my Gamma Knife doctor before freaking out. This morning my Dad took me down to Newport Beach with my scary MRI CD in hand to see Dr. Duma. Over the weekend I had a few episodes where my vision on the left side of my left eye got a bit... wobbly. I saw a black spot at one point. My headaches have been much better on the steroids, but I am still just tired and nauseous all the time. Of course, its hard to be tired on steroids, so I have been exhausted while filled with pent up energy that has fueled my anxiety. I was ready to get information from Dr. Duma today about the huge area of swelling around my right ventricle, and expecting the worst after Dr. A scared the bejeesus out of me last week in DC.

Dr. Duma came in, looked at my scans, asked questions, and let his resident do a neurological exam. He then told me that when I had Gamma Knife in February he treated both ventricle tumors as well as the tumor running down the center of my brain, and that unfortunately a healthy area of my brain had gotten a bit too much radiation as well. I asked how this happens, he said it just does, it's a known risk. I asked if it was radionecrosis, and he said he does not like that term because it means brain cells are dying, and they are not. (sigh of relief) He said the entire white area is edema (swelling) and that I should continue the steroids for about another week and the swelling "should" absolve itself within the month.

Excuse me? Did I misunderstand? Last week I was told this was a really dangerous thing on my brain and I could be facing surgery. That my vision fibers were involved. I had already heard from Dr. A Monday morning clarifying that the fibers involved were directly related to the left side of my vision, which was scary because of the weird shimmering I have been having to my left.

Dr. Duma believes the swelling in the ventricle is causing small visual seizures. He also said it is time for me to get on anti-seizure meds because I just have a lot of tumors, and any of them could cause a seizure, but specifically for my current situation it is the best course of action. He said the modern anti-seizure meds are not a problem to take and I should do fine on them. I have to take steroids for one more week, and got some Xanax to calm the heck down. While Dr. A wanted me to MRI again in 3 weeks, Dr. Duma said if my headaches don't come back then 6 months is fine. I asked if for my own mental health and well-being we can just MRI in 1 month to be sure this issue is under control and he agreed although he really didn't think it was a big deal! I reminded him he wasn't walking around with this in his brain but he pretended not to hear me, HAHA, I am teasing, I love Dr. Duma. I don't blame him or Gamma Knife for this ordeal. I blame the fact that I have NF2 and countless brain tumors, and treatment is never going to be perfect. I will still have Gamma Knife in the future when possible and will continue to avoid surgery.

I asked what daily activities could potentially trigger seizures or problems. He then dropped the bomb on the Fabulous Running Mommy, he said hard exercise is not recommended for patients in my type of situation. He basically said, don't get red in the face, but that I can listen to my body and find my balance. No more marathons? No more speed miles? No more weight lifting? I'd rather be slightly chubby and be able to see my children grow up then hurt myself trying to attain a level of fitness slightly out of my body's reach, but the idea of giving up such a large part of my active lifestyle is a bit disheartening.

So, I was sent home with some meds and a smile, and told not to worry. I trust Dr. Duma's opinion because he is a Gamma Knife doctor and sees this all the time, and he said it generally resolves. I've been so afraid all weekend, I am having a hard time believing it could be that easy. My plan is to take my meds and rest until the MRI, and then take baby steps from there. One day at a time is all any of us can do, but a lot can be accomplished in a day.


KC said...

huge sigh of relief huh?
i am glad u have trust in Dr. Duma,
that is sooo important.
"Listen to ur body", good plan,
and u already do that anyways!

Sarah said...

Olivia- You're so right. One day at a time is all any of us can do. I'm so glad that Dr. D was able to give you a little more informtion and a respite from this anxiety. We are all here for you, praying that sound answers and treatment plans will come quickly. xoxo Sarah

Rebecca said...

Oh sweet Olivia! My heart aches for you and I have been there too. It was quite a shock but after a long period I did come out of it.
I had one doctor also tell me not to lift weights or do any kind of straining exercises. With due respect to Duma, the guy who told me that was a bafoon!
Look at everything I have done and accomplish now. Baah! That was one of the naysayer doctors who did not understand what it means to savor life!

I will admit though that I have had to learn to adapt. Whether or not I exercised I still would have incurred the same side effects with vision and balance that I do now.

Yes the vision issue is related to the edema and ventricle compression from the tumor/s.

I am here for you girlfriend whenever you need support or have questions. I went through it when I was about your age. Hang in there! I know it is a rough ride.

By the way, on my 5 mile run this morning I reflected on how much better my life became by increasing my strength through working out.

I would recommend consulting with some other docs experienced with radiosurgery and it is helpful if they also do surgery too so you get a more unbiased opinion. Good luck and let me know what you find out! :)

Arwen said...

<3 <3

paul said...

One day at a time sounds good...ill be right there with you :)

Olivia Hernandez said...

Dr. Duma does do surgery as well as CK & GK, he actually did my most successful spine surgery to date.
I did however think of you as soon as he said I need to be careful not to strain too much because of the seizures. I thought but look at Beck! LOL So I will take it easy for now, listen to my body, and hopefully ease back in. I got dizzy at Mica's gymnastics class right now just from hustling her in from the parking lot. I have dealt with swelling so many times, this time there is just so much it is scary! I definitely feel better now though and am feeling positive the entire thing will resolve and be yet another page in my medical file LOL, and definitely a huge sigh of relief for today!!

Michelle said...

Olvia im so happy for you! I had tears in my eyes reading your latest blog. Wonderful news and i hope you feel better real soon xxx

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