Neck and headache pain still😓

[skamper]

Hello everyone, I haven't been on in awhile.  I feeling so frustrated right now.  I continue to have horrible neck pain which radiates up my neck into my head on the AN side.  Sometimes it's ,old, sometimes, extremely debilitating.  Yesterday was one of those days.  I had to leave work early so I could come home and lie down and take some pain meds, I called I sick to work today😔. I hate this.
I am three years out from retrosigmoid and gammaknife on the small piece left on my facial nerve was in January.
Called neurosurgeon today, wait till tuesday😓.   I just want my life back, what can I do to make this happen?  I'm tired of all the over the counter drugs I keep taking!  Mostly because they don't seem to work anymore.   I have to take a nap almost daily again to keep going everyday after work.  I feel I'm useless to my kids and husband😪.  The days when I think I feel great, I always wind up over doing it and regret it the next day or two.
I really want answers but don't even know where to start?  PCP, ENT, Neurosurgeon, or radiation doc?
Thanks for listening,
Susan

[jaylogs]

Hey Skamper!! I'm so sorry you've been going through all this.  I know sometimes this does happen, Mei Mei is the resident expert on headaches and maybe she can chime in if she reads this, but she's not the only one. I too get some pretty good headaches and I am like you, I get tired of taking OTC meds.  It sounds like I am a few levels below what you are feeling, but I can certainly emphasize with what you are going through.  I would try to get a hold of your neurosurgeon and see what he says.  It's a starting point.  I brought up Mei Mei's case because she had issues with the mesh they put back in.  That may not be your case, but there are a few things that could cause such problems and it would be a good idea to start getting some professional opinions, because you should not be feeing useless and in such pain for so much time.  Let us know what you decide to do, take care!
Jay

[Echo]

Hi Skamper,

I'm one week out of Gamma Knife treatment, so not sure if I can offer much help, however, I am taking vestibular rehab and have a terrific therapist.  We spoke one day about headaches and exhaustion which I was struggling with.  I also complained about the good days where I can go and go and then boy do I pay the next day.  She told me 80% of her patients are type A personalities or have similar traits, they just don't know how to slow down.  She stressed to me to take a rest each and every day at some point whether I felt that I needed one or not. Nothing longer than 15 minutes but make it a habit.  It's something prior to treatment I was good at doing and hope to continue.  It's just one little thought to send your way and hopefully you will get other suggestions.  Reaching out to your Neurosurgeon sounds like a good place to start as well. 

I hope things improve for you soon.
Cathie.

[Petrone]

Hi Skamper,

Sorry to hear about your on-going struggles. This is just my own very humble opinion, but you could probably roll up the medical knowledge of your PCP, ENT, neurosurgeon and radiologist all into one and they still won't be able to help you.  I'm no doctor, but I'm not sure what etiology would connect your AN surgery or gamma knife to severe neck pain?  Have you ever considered that your neck pain may be caused by a severe case of plain old stress?  Stress can cause debilitating pain in the neck and shoulders.  Add up your AN and all of its challenges, your surgery and gamma knife, working, parenting, marriage, etc., and one can start to imagine that you're probably under a great deal of stress. Do you sit a desk at work by any chance?  Deal with the public?  Disagreeable colleagues?  All stressors.     

Again, this is just my humble opinion, but maybe exercise, yoga, or meditation would be worth trying -- if you can find the time.  I used to experience stress regularly in my neck and shoulders that was unbearably painful.  I'd get temporary relief from an occasional jog or swim. Then, about 18 months ago I began practicing yoga. I've never felt so stress-free in all of my life. No more neck and shoulder pain. Ever! 

Just a thought.  I wish you well,

Petrone   

 

     

[staypoz]

skamper, I'd certainly start with your existing doctors and if they aren't able to help you, I'd ask for a referral to a pain doc.  Unfortunately, finding what works -- prescription meds, botox, etc. -- can be a matter of trial and error and it can also be frustrating.  The important thing is to find a doc who will work with you.  You might want to take a copy of the ANA pamphlet on post treatment  headaches with you to your first appointment so that they understand that the pain you are  experiencing is not an uncommon side effect.    And while stress can make pain of any kind worse, especially because many of us have a tendency to carry the stress in our shoulders and neck, post-treatment headaches are real. 

I have said many times on this forum that there is relief to be found.  Be persistent in your search for what will work for you. 

staypoz

[skamper]

Thanks everyone.  Will make a list tonight to take with me to my appt Tuesday.

[deboline]

Susan,
  I am shattered to read your post - unfortunately I know exactly what you are describing. I am 44 years old, had my surgery in 2004. I have suffered from headaches since 3 weeks post op.  I honestly feel like I have tried everything there is to control these headaches. My neck pulls so badly at night, I often describe by headache as intense pressure - sometimes like a charlie horse would feel in your calf across the AN side of my head.  I also get pressure behind my one eye.  I find relief in ibruprofren, narcotics do not work any better so I stick with the OTC.  I have tried every drug, cranial sacral therapy, nerve blocks. botox, even acupuncture.  My worse headache is usually as soon as I wake up in the morning, it usually peaks between 4-6am.  Also, if I do anything that involves bending - like taking clothes out of the dryer or picking up the yard - instant headache.
I too am very frustrated. I never had a real headache in my life prior to surgery.  I had a follow up surgery to remove the titanium mesh from my head - this did provide some relief, but the headaches come in waves still. When I am having a bad week, I can have 2-3 headaches a day, pain scale being a 7 or 8.  I am so used to them after all this time, I can't even cry anymore. 
I have resolved to give it one more real try to find relief - I have secured an appt at the Jefferson Headache Center on Dec 4th.  I have resolved that if they can not do anything - then I just need to find a way to accept that I will have these headaches the rest of my lift.
I am happy to answer any questions about types of treatments and if I learn anything new, I will certainly pass it on to you.  Although I do not wish to ever read posts like yours, sometimes it does reaffirm to me that my pain is real and I am not crazy - I have had my fair share of doctors start out being optimistic in treating me and it always ends the same way - a referral back to the local pain center with no clue as to where these headaches come from. I waited a year to see the "headache specialist" at the Univ of MD Medical Center and I just got my walking papers from her   Hoping you find success!
Debbie

[Captain Deb]

Hey Skamper
definitely a pain clinic for trigger point injections in the neck and possibly a nerve block in the occipital nerve.  Meanwhile, start working with your insurance co on Botox for migraine--which was the tipping point for me.  I went through this 10 years ago and Botox was being used off label for headaches so insurance co wasn't paying for it.  I finally got disability and Medicare which did pay for it--in hindsight, I would have paid out-of-pocket for the botox--probably wouldn't have lost my career in the process like I did.  Watch the NSAIDS--I ruined my stomach lining permanently over-using them even though I took them with food.  Good Luck!

Capt Deb