20 Years Post Craniotomy and Still Miserable

I was 19 when I was diagnosed with a Meckel’s Cave Schwannoma. I got hit in the head with a softball in college and started having intense headaches. On an MRI of the head with contrast, they found the tumor. So this was an incidental finding. It was removed in August of 1998. It was benign. I’ve had repeat MRIs over the last 20 years with negative results. So the tumor is not growing back. I do have encephalomalacia. But for 20 years almost, I’ve had headaches and migraines. I’ve been on so many different medications, I’ve tried headache infusion therapy. I also had a migraine decompression surgery 3 years ago which did nothing. I had 2 sessions of Botox which didn’t help either. I’ve seen numerous doctors, ENTs, psychologists, etc to assist with the pain and depression.

Long story short, I can’t really exercise, I can’t be outside for a long period of time when it’s hot, I can’t handle the humidity. When I exercise or do anything physical, I get hot and that turns into a bad migraine. Humidity and the insane hot weather don’t agree with me. In the last 6 months the pain has gotten much worse. I’ve experienced a lot of pain and pressure over the bridge of the nose. I had a CT of my head, a CT of my sinuses and another MRI just to cover all the bases. I thought my sinuses or turbinates had something to do with this pressure. But the ENT I went to (practicing for 30+ years), told me that it had nothing to do with my sinuses. He said it was all neurological and there is miscommunication between my brain and the pain areas. So when I heard that, I felt like 20 years was wasted.

After all the doctors I’ve been to, all the medications I’ve tried, the surgeries I’ve had, it was like I was starting all over again. Needless to say, I’ve been in a serious funk. Another trigger for me is barometric pressure. My family and I have been doing a lot of searching to see what areas in the US have the least pressure changes. I currently live in Ohio and it’s one of the worst states for changes. I cannot deal with rain. If it’s going to rain, or is raining, I am the most miserable person. Or if there is a significant drop or rise in temperature, I am in a lot of pain. At this point, I am willing to do ANYTHING to get rid of this constant pain and lead a normal life. I will be 39 in June, and this pain has taken up more than half of my life. I am single with no children because I cannot bear to put anyone else through this misery. I can’t continue with other parts of my life if I can’t control this.

I am looking for suggestions on what part of the country to possibly move to with the least amount of barometric pressure changes and low humidity. California seems to be a decent area. San Diego caught my attention. I can’t deal with Florida due to the humidity. Any suggestions?

Also, I know that clinics around the country are doing something called the Omega procedure. I’ve requested a kit from the Migraine Centers of America to get more information on it. Has anyone ever had it? Does anyone know of people who have? What type of results are people seeing/feeling? Again, I am willing to do anything at this point to get some sort of relief so I can live a normal life. Thank you

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Comments

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  • lrogers611
    11 months ago

    I’m sorry you’re dealing with all this. Unfortunately, I can relate with the frustration of uncertainty and relentless pain. I’m in Boston and the barometric pressure here is unstable, which doesn’t help. Over the years I’ve had nerve decompression surgery, been on multiple meds, and currently get Botox. I thought I’d respond to your post because my migraines so often seem to originate in my sinus region/temple area and many times are exertion induced. If you haven’t already heard of/tried Indomethacin, I wanted to mention it to you. It’s an NSAID that requires a prescription and worth talking to your doctor about. While it doesn’t work 100% of the time for me, before I know I’m going to be physically active I take it and it helps to prevent migraines some of the time. Good luck to you. I hope you find some relief.

  • Momo12
    11 months ago

    Hi,
    I am so sorry you are going through this. My son has been suffering from a 24/7 headache and migraines for 5 1/2 years. He is 16 now. Nothing has worked for him, and he is just now getting either Botox or a nerve block depending on insurance approval. Barometric pressure also hurts him, and we live in Georgia (ever changing weather). I never considered moving until I read your story. Why don’t you try visiting one of this places you mentioned for at least a week to see if there is a positive response before you make a big decision. I would be curious to know if it helps, and I sure hope it does. Was you decompression surgery of the C-2? I came across this doctor’s website from Boston, and I found his approach to occipital neuralgia surgery for headaches very interesting. Here is the link: http://www.drjho.com/id55.htm I wish you the best, and please keep us posted. Thank you!

  • blancj8
    11 months ago

    I have heard people say good things about Yoga and Ti Chi for migraineurs. Sure its not target heart rate cardio, but they should limit the trigger effect. I plan to try one as soon as I can, and if its not convenient I might join my son’s in Karate class and do everything is slow motion.

  • Joanna Bodner moderator
    11 months ago

    Hi there @Marenator2000, Thank you so much for your willingness to share your very long & hard journey. I am so sorry how long you have had to battle this pain both physically & emotionally. Know you have a community behind you here that knows what you are going through.

    As you wait for members to weigh in with their experiences, I thought I’d share a few resources that you may find helpful.

    What’s the deal with the “Omega Procedure”? – https://migraine.com/living-migraine/whats-the-deal-with-the-omega-procedure/

    Relocating to Reduce Weather Triggers – https://migraine.com/blog/relocating-avoid-weather-triggers/

    Triggered by Weather? This Medication May Help – https://migraine.com/living-migraine/triggered-by-weather-this-medication-may-help/

    Know we are always here to lend an ear. Take good care.

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