Still not quite right a year later, but I'm alive!

[joviyach]

I had surgery to remove a benign tumor from my brain nearly a year ago and I am still experiencing some strange, and yet unexplained things.

I get twitching muscles, the most of annoying of which is when my thumb and index finger on usually my right hand start twitching uncontrollably. Last night I got the worst of this yet, my whole right hand was twitching. I sometimes feel like my hands in general are weak and clumsy. The clumsiness was actually one of symptoms that led to the diagnosis of the tumor, it just hasn't gone away completely, all the time since it's removal.

Also, I have this glare-like sensation in my right eye. My vision was better than 20/20 before the tumor caused me to have surgery. This comes and goes.

I have frequent headaches. I always had this though, and I do have bad sinuses. I am not about to put myself through another surgery though unless it is a life or death situation.

So, I am glad to be alive, and certainly I could be a lot worse off than others, but it bothers me that I have no answers for these things. I have taken all kinds of tests. I am taking Topamax, etc... I would just like some piece of mind I guess, know that I am not dying of something else.

[Discododi]

Hi Jim,
Have you had a follow up with your neuro surgeon? You may want to discuss how you are feeling with him and get his take on the matter. What kind of tumor did you have? I had a colloid cyst of the third ventricle removed in 2000. Definte life changing experience for me.

Talk with you soon, Dodi

[joviyach]

Hi.

I had a choroid plexus papilloma removed from the fourth ventricle. As you probably know, there were so many things that could have gone wrong that thankfully did not. More than 50 percent of the people who have the surgery that area of the brain end up with permanent complications.

I have been to several followups, but they don't seem to know, or be able to tell me what is going on. I just would like to know whether or not this is a permanent after effect of the tumor/surgery, etc... I am fine with that. Resigned to whatever, just hoping to find out that I am going to live. ;)

[Discododi]

Hi,
I wanted to tell you I had a tremor in my right hand after surgery. I was unable to hold my hand still, and could not hold a cup with a beverage without shaking it out all over the place. My neurosurgeon told me that it was because of irritation to certain nerves during the surgery. He did say it would eventually subside. I used my left hand as much as I could so I would not drop or spill things, but eventually the right hand tremor started to settle down. I hardly ever notice anything different these days unless I am very tired, I will get a small shake in that hand, but nothing like the severe tremor right after surgery.

You have come through a very major surgery. (I think ALL brain surgeries are pretty darn major! :) ) Best wishes to you, Dodi

[joviyach]

Well, it's been nearly 2 years, and I still have some as of yet unexplained issues. Sometimes I feel like I am "turning the corner", but then something happens to shock me back into thinking that I may never be normal, or even close to it.

I had an appointment with my neurologist yesterday, a follow up, and then last night ironically when I went to bed I felt the worst I have felt since even before I had the tumor. My heart was racing, there was twitching in my arms, legs, and face, and I felt like I was going to vomit. I have been exhausted all day today.

I just got a new job, and my family are all doing great, I am supposed to be able to be happy about these things, but there is always some health issue lurking to crush it for me.

[jingle]

What did your neuro have to say at your follow-up yesterday? Did you tell him/her about the trouble you've been having?

I have a physician friend (not the person who did my surgeries!!) who tells me it takes about two years to totally recover from brain surgery. I had my first in Feb, 2006 and last in May of this year.

I do understand what you mean by "always some health issue lurking to crush" and I'm sure hoping that things improve very quickly for you.

I'll say a prayer for you tonight. God speed your recovery.

[joviyach]

I have been telling the neurologist and neurosurgeon about the twitching. They have reassured me that it is not Parkinson's or anything life threatening, but I really wish I knew what it is, if it will ever go away, and if it is treatable without taking meds that would make me a zombie. The neurologist doesn't know about the seizure like episode I had the other night because it happened the night after I had the appointment. I have felt better since, but still twitchy.

Thank you for your prayers. I pray for everyone who goes through any type of brain tumor surgery, etc... and also their families. This has not been easy for my wife, and thank God my kids are so young they don't understand what Dad has been through.

[jingle]

Jim - you might want to try the National Brain Tumor Foundation Board. (I spend some time there on the malignant board....
They have all sorts of boards including benign. In case the address doesn't make it here, I also posted it above. http://www.braintumor.org/

It's so "relaxing" to talk to others who understand what you're saying and you can learn so much.

I'll keep praying for you.

[EarthMonkey]

I have been told by a nuerosurgeon that it can take up to ten years for changes caused by surgery to show up. I had a gangliaglioma tumor removed from my left temporal lobe. I ended up blind in the periferal vision of my right upper edge of my eyes. I also would get strange tingely or stinging sensations. For the first few months after surgery my right arm was acting lazy.

[JustAFactOfLife]

I too had a brain tumor but a different type. I had a benign Vestibular Schwannoma. It is also known as an Acoustic Neuroma. I had it surgically removed in 2003 but the darn thing came back in 2006. I researched my options again and found out that radiation was the best to treat it for a second time around due to the risks of surgery again. I chose Cyberknife which was without any pain and very little recovery time. I was afraid of the risk of radiation because of what I had heard, but after researching the topic, I found that many improvements have been made and even my Neurosurgeon recommended it. Another forum to explore your options is: www.cyberknifesupport.org/forum . There are doctors who will reply to your questions and patients too. Not trying to plug the forum because I'm both a member there and here. Both are great forums and the way I look at it, the better informed you are, the better you can make your decisions about your treatments.

I just wished I had known about Cyberknife back when I did the surgery!

[joviyach]

Well, it will be 2 years in November since I had my tumor removed. I sometimes have some twitching, today as a matter of fact my lower lip is twitching a little bit. These things seem to come about with changes in the weather. Sometimes I feel "normal" for a while and it gives me hope that I am out of the woods with the neurological symptoms, but then something comes along to remind me that I may never be one hundred percent rid of the legacy of my brain tumor.

On the good side, I am up to getting MRI of the brain yearly now instead of every couple of months because everything has looked good the last several times I had an MRI. There is no reason to believe at this point that I am in any danger of having more brain surgery according to the doctors. This is great news! In two years I have gone from thinking I was going to die, to struggling to recover from major surgery and the effects of steriods I had to take during recovery, to being to lead a somewhat normal life and enjoying time with my wife and kids, and actually not taking the time that I have for granted (most of the time). I certainly wish that there weren't all of these things that come up to remind me of what I have been through, but I am still alive and God willing, I will get to see my girls grow up. I literally pray that everyone who has to go through what I went through gets the same chance I have now.

[jingle]

Great News Jim -- I'm so glad you've written to us again. I'm even happier that it's such good news.
I understand that the news of less frequent MRIs is one of the very best things you can hear from your neurosurgeon :)
Oct. 4 -- 10 days ago -- I got the same news from mine. Now I will get my MRI every 6 months instead of every 3 months. Big, happy change :p

[joviyach]

Congrats! That is good news indeed. :)

[EarthMonkey]

I am glad you are feeling more comfortable. And had the good news about the MRI visits. I am getting the MRIs every couple years now.