The Last Round
Two weeks ago when I went to the neurosurgeon he said that we should move forward with another blood patch. I wasn’t happy, to put it mildly. I agreed anyway because I felt like I would be a hypocrite if I spent so much time saying that I would do anything for pain relief, but then turned down the only treatment available.
And yet, that’s exactly what I’m going to do.
I’ve spent hours researching, combing through articles, trying to find literature that gives any evidence that I have a spinal fluid leak. But simply put, there aren’t any articles, there isn’t any evidence. My symptoms do not match up with a leak. The protein in my CSF isn’t high, the headache has lasted for over 9 months when a leak should resolve on it’s own much, much faster.
And most importantly, the other patch didn’t stop the pain. I think that the brief partial relief of that patch was almost entirely because shooting that much blood into my epidural space caused my pressure to increase. Which makes sense when you realize that as soon as the back pain from the pressure went down, the headache came back. It basically makes perfect sense.
I have intracranial hypotension, but I do not have a spinal fluid leak. My brain is what’s wrong. I’m not producing the adequate amount of spinal fluid, and that’s why my head hurts.
And that’s really why I’m saying no. Of course, I also don’t want to give up my only 4 days of vacation between semesters to an incredibly painful procedure. I don’t want to spend the thousands of dollars that this procedure costs. I don’t want to deal with the side effects and extra pain that isn’t helping me in any way.
And if I’m being completely honest, I don’t want to exhaust this option. I don’t want another treatment to fail. Because it means that there’s almost nothing left we can do.
And yet I’ve spent hours today, in tears, because the alternative isn’t good either.
My insurance only allows one referral per specialty per year, and I’ve already used up my neurologist and neurosurgeon this year. Going back to the old neurologist is not an option because she’s already thrown her hands up in confusion with my case. And going back to the neurosurgeon right now isn’t really an option either. He has given me 3 choices, and frankly, none of them work for me right now. It’s not his fault, he’s doing everything he can.
So what this boils down to is that I’m giving up. For now.
I am not saying that I’ll never try again. I’m not saying that I’ve given up all hope of ever having a pain-free life.
But what I am saying is that I need a break. The treatments are becoming almost as bad as the headaches. And when they don’t improve the headache, then it’s just extra pain for no reason. I cannot bear more physical or emotional pain right now. I just can’t.
I know several of you are mad at me, disappointed with me. And I get it. Yes, I would fight harder for others I love, no, I wouldn’t let them quit. Yes, that makes me a raving hypocrite, I’m aware of this.
But I’m tired. I can’t fight anymore. I don’t have the energy, I don’t have the sanity, I just can’t.
And I hope that you can understand that if I thought there was another option that didn’t take even more of me right now, I’d do it. But there isn’t.
Yes, I am very intentionally closing this door to this treatment. And now I’m just praying that somewhere, somehow, a window of relief will open soon.
30 Responses to “The Last Round”
Leave a Reply
Welcome! I'm Katie, a 28 year old, full-time graduate student who just happened to have brain surgery in November of 2007 to give my ginormous brain a little more space. This blog chronicles my daily life, from relentless headaches to being a doctor's wife. Sit down, get comfortable and stay for a while.
I think that anyone who could be mad at you for making what you feel is the right decision for yourself can’t say anything until they undergo what you’re going through.
I’m just sorry that you’re in such constant pain. (Hugs)
[Reply]
Oh, Katie.
I’m so very sorry you’re going through this. I can’t even begin to imagine. I so wish I had a magic wand and could make this all better for you. *hugs*
[Reply]
I wish someone could figure out something to help you. And I agree with Maura, you need to make the decision that’s right for you. People who care about you will be with you no matter what. : )
[Reply]
If it didn’t work before, you are COMPLETELY RATIONAL to decline to try it again.
The disappointed and anyone who thinks you’re a hypocrite for refusing a treatment that didn’t work the last time needs more insight into your situation than you need of anything from them. How many times do they think you need to repeat an ineffective treatment? Fifteen times? Seventy five? As many times as it takes until it “takes”??
I’m sorry this made you cry. We Migraineurs have enough to deal with without other people adding their own agendas for us into the mix.
Prayers for peaceful rest and pain relief, dear one.
[Reply]
Dawn Reply:
May 8th, 2010 at 6:11 am
Yes, this. If it didn’t work, it makes SENSE to turn it down. You’re not a hypocrite; you’re just stuck in a rotten situation with no good answers.
[Reply]
Knowing when to say enough is enough is NOT giving up, or failing, and you are not a hypocrite. You are taking control of your situation, something which you have felt has been lacking in your life (judging from your posts) for quite a while now. GOOD FOR YOU. Everybody needs to catch their breath at some point. I know you cannot escape the pain in your head, I so wish you could. I hope this decision liberates you. You are one brave woman ox
[Reply]
I nodded my head the whole time I read this post. I really get where you are coming from because I have been there myself. It’s hard to say “enough” and “stop” but I have learned that if medical treatments are working or helping, I need to be the one that says enough (because the doctors are like the Energizer bunny sometimes!)
I’m sending healing thoughts your way and hoping for that open window too.
[Reply]
If anyone is upset, it’s probably because they just don’t’ want you to give up. You have a lot of people who care about you. I also believe that you need to do what you feel is right for you and that the right time is when it’s right for you. You have so much going on and you handle it much better than I imagine I ever could. You could always come to boston and get a 3rd opinion and talk to our Neuro dept when that time comes
we have wicked good cake! Hugs
[Reply]
I don’t think you are giving up, I think you made a rational choice about what is best for you. I hope that peace (emotional, mental, maybe even some physical) can be found from this decision. That hitting the pause button will recharge you and when/if more options present themselves you will be in the best place to accept them.
Hugs
[Reply]
I don’t know why anyone would be upset with you. This is your life and only you can make the right decision for yourself.
Good for you for making the tough decision. Take a break from all the painful procedures! Sometimes it is worse to have hope and be let down then to never have hope to begin with. Give yourself a break from being let down.
[Reply]
This does not sound like giving up to me – it sounds perfectly reasonable to look at the evidence & question the procedure, as well as take into account how tired you really are physically and emotionally.
Everyone has heard stories of cancer treatments having to be paused so the person can regain enough strength to tolerate further treatments. Just because most people don’t have experience with your brain’s issues and your pain doesn’t make your decision any less valid.
Frankly, I think it takes a hell of a lot of strength to make this decision.
[Reply]
I just wanted to ditto everyone else and their eloquent responses and say that you are making a well thought out, rational decision that is right for YOU – and that’s what matters. Enjoy your break from school and do what makes you happy and refreshed – sometimes thats better then medicine anyway.
[Reply]
I do not blame you one bit. You know that the treatment isn’t going to fix you, and I know how it feels to be caused more misery by the treatments than the actual problem.
Something will come around and help you. I’m sure of it.
[Reply]
I agree with you and everyone who commented. Follow your instincts Girl.
xoxomo
[Reply]
Well, I don’t know you well enough to be mad at you
But I think this sounds very reasonable and well thought out, and at the end of the day, you have to go with the least bad option, and this seems like the least bad to me, too.
[Reply]
You send ANYONE who is upset or disappointed in you my way. I will set them straight. If something isn’t working, you don’t just keep doing it hoping for different results.
Love and hugs to you every day.
[Reply]
Just clocking in on the mad/disappointment issue. I am neither. This is your journey and you have to walk it the way you see fit. There are things I wish you would do a bit differently and I have stated them. I wish you were as open to help as you are to helping. That’s a biggie for me. (But, ironically, it also IS me, so I do understand!)
Honey, I do understand wanting to give all the fighting a rest…all the trying and hoping and believing and putting up a stiff upper lip and a smile on the face. I’m getting a bit tired of it in my journey as well. In my case I am getting tired of worrying when I am invited to do something, wondering if the pain will be so intolerable that I might not be able to stand up. Getting tired of a life of always having to push through SOMETHING just to live as close to a normal life as possible.
I won’t give up. And neither will you.
But every once in a while, we need the freedom to imagine that we might.
I have complete faith in you. Now, if you could just do the same for me, I know we’ll both make it through.
[Reply]
Katie Reply:
May 8th, 2010 at 5:17 pm
We will make it through.
But because I’m in a place where what I really need are suggestions, lay some on me. I do not promise I’ll do them, but I’ll at least consider them.
[Reply]
Kathy Reply:
May 9th, 2010 at 9:54 am
Katie I have been following your blog for a while now. My sister in law has had very similar problems because of a very different reason — brain tumor surgery over 20 years ago. Long story but she has had blood patches, headaches galore, CSF leaks, the “patch” they put on the tumor site kept disintegrating and she kept having to have it re-patched. Finally this Feb. she had a craniotomy and apparently the neurosurgeon said this is how the patch (between her brain and her nasal cavity) should have been done in the first place.
I am wondering about artificial CSF — is there such a thing, and would that help you?
I totally get not wanting to have any more blood patches. My sister in laws didn’t work forever either, and she kept getting scar tissue on the blood patch site, etc.
Anyways take care. I am so sorry there is so little out there to help you.
[Reply]
I understand. i have been living with “intractable” migraines” now occipital neuralgia for 20 years. i have nerve blocks down 2 per week to control pain as week as having tried about 2o different types of meds for pain. Surgery is now indicated but family are trying to steer me away. No one can walk in your shoes!
[Reply]
Honey, we all hit this point at least one time. You should never apologize for being human.
I still admire you and still think you are an amazing advocate.
Tickle me stupid… What is a bloodpatch and what does it help?
[Reply]
Katie Reply:
May 8th, 2010 at 7:55 pm
You’re not stupid! It’s pretty rare. Basically they insert a needle into the area just outside the spinal canal (like an epidural during child birth) and then insert some of my own blood into it. The idea is that the blood will clot into any small holes along the dura (covering) of the spinal canal if there’s a spinal fluid leak. I’ve had 4 so far, three of them for leaks that were caused by lumbar punctures, and one as a try at stopping the headache in general.
Hopefully that made some sense…
[Reply]
I can’t fathom how people could be mad at you for deciding your own course of treatment or opting out of treatment.
You don’t need anyone’s approval but your own to do what you need to do for yourself.
[Reply]
Only YOU know what is right for YOU!! I’m so sorry. Sending lots of love. xoxo
[Reply]
I don’t see it as “giving up” at all- you need some time to rest, research, and get a little living done. You’re not someone who complains all the time but never does anything about it- if anything you’ve been aggressively pursuing treatment. Maybe having some time to decompress after finals will help emotionally a bit, and recharge you for future research and treatment. *hugs*
[Reply]
I totally understand. And I’m so sorry there isn’t something better out there. Hugs and love to you.
[Reply]
Your decision makes perfect sense and I support you fully. One suggestion: keep your neurosurgeon thinking about you. Send him an email (or if not possible, a snail mail) once every month or so including a brief update and request for any new updates/developments in CSF studies. He’s our best hope (for now) for a cure and we don’t want him to forget his failings
[Reply]
Joy Reply:
May 11th, 2010 at 8:47 am
This is a brilliant idea.
Wishing for the best for you, Katie.
[Reply]
This is so understandable to me. Sometimes another disappointment in the ongoing saga of “…dancing with Doctors…”, is almost harder to bear than the thought of just dying & getting it over with. Thank God for the times medical stuff works, & thank God for the grace to endure & go on, when it doesn’t.
[Reply]
Whew! Your reasoning sounds *ahem* totally reasonable to me.
I’m glad you answered what a blood patch is; I’d been meaning to look it up but your explanation is nice & understandable.
*hugs*
[Reply]