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July 20, 2008
Oy, my aching head!
This is one of the more dramatic pictures from the MRI scan earlier this month:
I've been looking through the pictures, and there are a lot of them. I find them compelling, that's normal I suppose, after all, it is my head, but I confess that I find this one picture in particular to be fascinating. While no one with any real knowledge has explained this picture to me, from what I do know, I assume that the tumor is that small funny shaped grey thing at the bottom center and the rest is just brain fluid in the gap from the last tumor, and perhaps a bit of inflammation.
I look at the pictures and I think.... no wonder my head hurts. Yet, they tell me that this tumor is not really compressing my brain and should not be causing the headache.
I've never had a headache like this. For the most part, if I'm sitting still, holding still, all is well, but the slightest movement, if I move my head, or turn it, or if I bend over or even lean any which way, when I walk, or when I get up or sit down, when I go over speed bumps or any other bump in the road, or when I sneeze or cough, or when I get upset and my blood pressure goes up, pounding pain just explodes across the top of my head.
Even before we found out about the tumor, I figured I was taking too much headache medication, my drug of choice for headaches is advil, I was eating them pretty much every day, and supplementing now and again with a half of vicodin if it was especially bad. No matter what I took, the headache never really went away and its getting worse over time. Of course, the headache was part of the reason that I went back to see Dr. Landy, but then he told me that he didn't think this tumor was causing the headache. I was dumbfounded but then, he's the tumor specialist and I'm not.
So, at his urging, last week I saw another neurologist, a headache doctor. He does his testing, talks about migraine (even though my headache has nothing in common with migraine, except that it hurts) and he talks about concepts like rebound headache (more on that later). Then, he looks at the pictures and he tells me that the tumor is next to the rather large vein that runs across the top of the head and drains the blood. Yeah yeah, I knew all that, this vein was a real issue with the first surgery because the tumor was attached to it and its not like you can remove it. Ten years ago, all we talked about was the main vein on top of my brain, a bizarre coincidence of rhyming words that made me feel like I was living in a Dr. Seuss story. But, the fact is, its more than likely that when they were trying to remove the tumor from the vein (what they do is scrape it actually), they missed a bit, and that would be what's growing now. That's all blah blah blah to me, old information. What about the headache?
Well. He can't tell from the pictures we have, but this neurologist thinks its possible that the tumor may be pressing on the vein and slowing the drainage of blood out of my head. The build up and resulting swelling from a partially blocked vein could cause headaches like I am describing. From the description of my headache, it certainly seems possible, and my heart sunk when he said it. Just thinking about it is enough to make my head hurt.
First order of the day, no bending, no lifting, no straining of any kind, walk softly, move slowly. Stay calm, don't get upset, keep the blood pressure down. Second order, another MRI, a different kind of MRI, to see if that is really what's happening. They use a different dye to light up the vein instead of the brain or tumor and they look for a narrowing. If they find the narrowing, well, then they have to fix that before they do the radiation therapy.
Remember, the cyberknife is not going to remove my tumor, we only hope that it will arrest the growth, and if I'm really really lucky, over time, it might shrink it a little but they tell me not to get my hopes up on that. The real problem now is, when applied, the radiation will make the tumor swell and if the tumor is pushing on the vein already and the tumor swells, well, it could block the vein even more, or even entirely and then... well... you know.
Every thing is on hold until we find out.
This would not be a good thing. It would mean another procedure, one where they have to go through my nose to try to fix it before they try to fix the tumor with radiation. I refused any details about that procedure, I am on information overload at the moment and don't want to deal with what that's like until its a reality.
There is another remote possibility, the doc mentioned a concept called rebound, where the very medications you take for headache cause headache and that could be part of the problem. WTF? I have a tumor in my head, and you think the headache is rebound? Forcryinoutloud, don't I have enough to deal with?
I guess not, because I have been told to stop taking any and all pain medication. I can't take anything at all anymore, not until we figure this happy horseshit out. Its been four days now and the headache is horrible.
To make matters worse, I keep picturing that vein swelling up like a balloon every time I feel my head pound, and I feel it a lot. I had some very real moments of panic over the last few days, and I'm terrified of doing anything that might possibly effect it. I'm even afraid to cry, because then I might have to blow my nose and if I blow my nose... well.
Its irrational, I know. If they thought that I would do anything that would blow that vein, I would be in the hospital, but every time my head pounds, rational goes right out the window.
I won't have the MRI until next Thursday, and between now and then, my darling neurologist, Dr. Koch, goes on vacation until the end of August.
Silly me, I thought this was gonna be easy.
Posted by LindaSoG at July 20, 2008 02:03 PM
Comments
Aw jeez, thats one heck of a visual kiddo and a crappy little monkey wrench in the game plan. Nothing is ever easy, you know that, and you do the hard stuff really well. Hang in there, we're with you and we'll get through this. it'll be fine, I just know it will.
Posted by: me-sarge at July 20, 2008 03:04 PM
*hug*
/pray
Posted by: Foxfier at July 20, 2008 03:21 PM
Thinking of you, hoping that everything works out. "There's no crying in Basesball"...oh, we're not playing ball.
Peskotomahkati Music Blessings an their way tonight. Take care, kid
Posted by: wollf at July 20, 2008 07:46 PM
Linda, I don't know the specific torturous pain that you are suffering. However, I can relate as I had painful headaches for many years which were compounded by the rebound effect whenever I stopped taking the fiorinal and codeine painkillers that I was on for most of those years.
I am now back in headache hell into almost eight weeks of a sinus problem that causes severe headaches on it's own and from steroid medication to fight the sinus problem. I am also suffering an Afrin addiction with rebound effects from using it so long to relieve the sinus pressure and nasal blockage breathing problems. I too had to stop my narcotic painkillers for the headaches as they had a bad effect on my stomach leaving me with only Excedrin to fight the pain.
I am having great difficulty conveying my torturous pain to others who have not experienced such a thing. So, going the long way around, I know my pain and can only imagine what you are going through. You have my empathy and sympathy for all the torturous pain that you are suffering with. You also have my best wishes and prayers that the pain will stop and your treatment will beat the shit out of that tumor.
You can be sure that you are not alone and that there are other pain sufferers who know what you are going through and feel, or have felt, similar pain. I only know you from your blog, but let me say, "Be well my friend, good things should happen to good people like yourself."
Posted by: Les at July 20, 2008 08:10 PM
Thanks for the update. All of your many, many friends are worried and, believe it or not, getting updates keeps us sane (well, kinda...) Plus, it gives us actual and explicit blessings to pray for. I was over at Wollfs Blog and his musical prayer for your health is beautiful. I am a firm believer in "any" and "all" prayers and only hope the God, which we each believe in, hears us.
We are here for you my friend!
Always.
Posted by: Dammit Woman at July 20, 2008 09:44 PM
I am still praying for you. You seem much braver than I am.
Posted by: Tommy Green at July 21, 2008 01:30 PM
I hope that these headaches at least subside and give you a chance to catch your breath . You are going through so much and are so brave. I have kept you in my thoughts and prayers daily.
Posted by: LisaK at July 21, 2008 09:35 PM
For you, Linda, what is known by the Baha'is as "The Long Healing Prayer". (We said it for Dad for his cancers surgeries, with success. He lived for several years with all his faculties longer than the doctors thought he would.)
Posted by: Kevin K. at July 22, 2008 09:41 AM
(:
Hello Linda,
I am so sorry about all this!
You are always in my prayers,
All the best,
Love,
Walter
Posted by: Walter at July 23, 2008 05:30 AM
"and the rest is just brain fluid in the gap from the last tumor, and perhaps a bit of inflammation."
Oh good, I was wondering whe the "Cingular" guy was in your head.
Smiles lady! I'm praying for you, lots.
Posted by: MitchM at July 23, 2008 08:05 AM
God bless you, Linda. Prayers going up NOW!
Posted by: Paco at July 23, 2008 06:55 PM
Just want to say that I've been reading your page for a couple of years now, though I seldom comment on anything, I feel like I sort of know you. You sort of make light of it, but I can only imagine how this must suck. Just saying I wish you well and does sadden me to know you're in such a bad situation. I pray that all goes well for you and that your doctors are successful.
God Bless, and keep you safe.
Posted by: Randall Powell at July 23, 2008 07:21 PM
I'm thinking about you, I know you had the test today. I suppose its too early to know the results, but please call me as soon as you're up to it. We are all worried about you.
Posted by: rene at July 24, 2008 07:53 PM
G'day, I'm not one of your regular readers but arrived here via a link, and just stopped by to let you know that you are now in my thoughts & prayers. The only serious headaches I've had were from IT (intrathecal) chemo for leukaemia, and bad as they were I always had the foreknowledge that they'd (eventually) go away. So, I may understand about 1/100th of what you're going through - and even as a big strong bloke I'm grateful that that 1/100th was all I had to put up with.
You say, "I thought this was going to be easy" - I hear you there. In fact I heard so many "success stories" at the beginning of my journey that I was (okay, still am) a little embarrassed that I am not (yet) one of the "winners," one who has "fought & won." Jeebus I'm getting to hate that whole "battle" metaphor.
Anyway, will try to stop by in a few days, but know that there are people you don't even know out here wishing you strength, and pulling for you. Cheers, an anonymous reader.
Posted by: anonymous at July 25, 2008 10:59 PM
Hi,
I wrote to you earlier about your mr. Neurologist could be right about the superior saggital sinus compression. Easy to look at with an MRV magnetic resonance venogram. Even so there are many other pathways for the blood to take. Headache is an occasional finding in complete sinus thrombosis. I often discuss patients MR imaging findings with them, you might ask the radiologist who reads your study to point out the findings. No to "Diss" neurologists, but they often see what they want and are not the most objective or highly experienced readers of MR studies.
Posted by: smfish at July 27, 2008 02:06 AM
Hi Linda, just wanted to give you a hug, a very gentle one so as not to make your head hurt. You are the first thing I think of in the morning and the very last thing before I sleep at night. You are in my prayers all day my sweet 'sister' and best friend.
Posted by: Wild Thing at July 30, 2008 10:30 AM
Linda,
I understand what you are going through. What I did and still do is let God control my thoughts. When we feel so helpless we need a super powerful Being to help us. GOD is our support.
Dan Donna
Posted by: Daniel Hildoer at August 6, 2008 11:45 AM
Headaches are from the middle kettle of hell.
Godspeed on your recovery.
Posted by: Gabby at August 6, 2008 12:42 PM