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In the weeks and months since my last visit to see my migraine specialist in Dallas I've begun to feel more and more like I didn't get the answers I wanted and expected from my visit. I noticed I felt that way again after my appointments with the pain specialist my local neurologist referred me to (the doctor who performed my radiofrequency rhizotomy [aka rfa] a few weeks ago).
Even after all this time and all these treatments and knowing what I know about my condition, a little part of me still hopes I'll show up at an appointment and the doctor will have some awesome thing to suggest that will make a humongous difference in my situation. In a way it's kind of astounding and quaint that I can still generate hope like that after all this time.
I'm feeling even more let down since my migraines and occipital neuralgia have returned to their pre-rfa level of frequency and intensity. Some part of me felt so sure this procedure would be the answer I was looking for. Something finally made sense about the pattern and characteristics of my migraines and neck pain when I learned about and was diagnosed with occipital neuralgia. It seemed logical to believe the rfa procedure would have the potential to abort my neck pain, thereby preventing the vast majority of my migraine attacks.
And it did - for two blissful weeks. The problem is that the procedure was supposed to last for at least six months. Two weeks is certainly the most relief I've had since my second round of Botox injections in December 2008 and more than I experienced when I received occiptial nerve blocks and cervical medical branch blocks. But it's still a huge disappointment.
This all begs the scary question of "What now?" I have some ideas of how to cope and move forward (go back to therapy, seek out opinions from all my doctors), but no idea what it would make sense to try next. I truly feel like I've reached the end of the road and that scares me senseless.
Technorati Tags: depression, migraines, chronic illness, health, somebody heal me
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Content by Diana E. Lee.
7 comments:
I'm so sorry the treatment didn't work longer. There's a fine line between acceptance of what is and maintaining hope for better treatment. I think it's possible to do both but often our feelings swing back and forth. Try to avoid thinking it's the end of the road for effective treatments. Medical science advances at a rapid rate and the future treatments for many conditions are already many researchers' dream and life's work.
Oh Diana, I've been in this place and it is not fun. After 5 and a half years of chronic migraine, I've had to accept that there are no specific answers for chronic headache and that management is the best goal. Hope will waver, but it is so important to always have hope. Don't give up - hang in there! I'm going back to see Dr. K in August before school starts up for my daughter. Hopefully some IV Ketamine and Mag will reduce my pain for a few weeks as my daughter gets started in school.
Julie
occipital nerve stimulators are supposed to work for occipital neuralgia related headache - is this a possibility for you? It was my last ditch effort for my headache.
I was told that some treatments don't last as long when you have SEVERE pain. Maybe that is what is happening with you?? So sorry the rhizotomy didn't last...
Hi Diana -
So sorry things are so difficult. I'm glad you still have hope - we can't go on without it. More and more I think it's not that any one thing will turn the tables but that finding the right combination will improve things. Maybe the rfa is part of your tool kit. Hang in there, hon! I'm thinking maybe some of what Dr. Young said on my teleconference at the end of June might help you - he was talking about treatment and prevention of intractable Migraine. I don't remember if you're registered for those, but if not it's a free registration and then you can access the recording.
- Megan
I'm sorry the treatment didn't work as you hoped it would, but I can totally relate to going to each appointment with that tiny kernel of hope that this time they will have found the right answer.
It hasn't happened yet, and after each false positive, failed treatment or broken promise of a cure, I wonder if I have the strength to go through it all again.
And then I figure that I don't really have any choice, now do I?
Oh, I know your pain. Well, not your actual pain, but the pain of getting my hopes up for a cure/treatment/improvement and having it not pan out. It's even worse when you get that hint of success, like your two weeks of major improvement, and then it all goes down the drain. :-(
All the previous posters made all the points (and then some!) that I was going to say. But I thought I'd post anyway and tell you how sorry I am that you're going through this.
I know starting over again in search of a treatment plan is hard. And maybe it's not out there yet. But soon, I hope! Very, very soon!
Good luck!
Diana -- I'm so sorry that RFA didn't end up being your answer. This sentence:
'In a way it's kind of astounding and quaint that I can still generate hope like that after all this time.'
resonated with me completely. In a way we never quite lose hope, right? I hope your next appointment is better and offers new ideas for treatment.
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