Skull and Headaches - help from Australia...

[ritapotenza]

Hi

My name is Rita.  I am new to this forum.  I'm from Australia.  I had retrosigmoid surgery for a 2.5cm AN in September 2016 - a few days after my 40th birthday.  Surgery only managed to get to 95% of the tumour so I underwent radiation therapy (sterotatic) in March 2017.  I am suffering debilitating daily headaches and skull pain that I desperately need help.  I have tried so many things...... accupunture, medication, physical therapy, various different pillows, nerve blockers... etc.  Nothing seems to work.  My most common headache starts where the neck meets the skull (tumour side) and radiates behind the skull and above my eye.  My jaw and face also is painful.  Does anyone else suffer similiar pain/skull aches?  Has anything else helped?  I am DESPERATE!!! I am also fully deaf in my right ear and suffer tinnitus.  It is comforting to know there are others out there like me

Rita

[Patti]

I get those pains periodically (post surgery) and have found relief from cranial-sacral therapy from an osteopathic doctor (not a masseuse). Google it. It is hard to explain.  But it helped a lot. But to maintain the results you may have to go on a monthly basis. Good luck! Patti

[ritapotenza]

Thanks Patti.  I will definitely look into this.   I do go to an osteo regularly but not like what you have described (I googled it - and found one kind of close to me!).  Thanks again Patti.  Even just getting your response has made by day!
Rita

[Patti]

Rita - I am so glad you found one!  How is it going?  Patti

[Shnicki]

(I’m a first time poster!) Rita - I feel your pain. I had retrosigmoid surgery in Oct. 2017 for a 3.0cm AN and suffer from exactly the same symptoms as you, including right side deafness and tinnitus. I too have tried drugs and physical therapy. PT has definitely helped with my range of motion and strengthen my muscles but I still get head/neck pain that starts at the base of the skull and goes upward and into my jaw and teeth and sometimes behind my eye. When the pain comes full blast, I can’t do much of anything but sit still and put heat on my neck to try and relax the muscles. Thankfully it usually passes in about 30min. I’m certain it’s occipital neuralgia but my doc continues to pass off my complaints/concerns saying “headaches can last 6 mo” and he won’t really do anything until then. So, I continue with PT and I’m praying the pain goes away with time, but not sure it will. Check out some other posts by Mei Mei. She too tried many treatments and got some relief. This is such a great forum and has helped me so much knowing there are others going through similar things. Do you know what triggers your pain? Sometimes I get it at night or after taking a shower in the morning, sometimes after taking a bath, sometimes the day after i’ve moved my head too much, sometimes from stress. One of my last episodes hit me in the grocery store and I had to walk out in pain and tears (out of my one eye that tears). 

Good luck to you! Let me know if you find something that works for you!

[ritapotenza]

Hi Shnicki and Patti

I would have responded sooner but I have been in a world of pain these last few days.  Patti - I have had one go at the cranial therapy.  My therapist told me it would take a few treatments to get the benefits so I am definitely going to keep at it.  Thanks for the tip!

Shnicki - it's still early days for you, so hopefully you'll be one of the lucky ones where you do just get better naturally over time I found that after 6 months I was starting to see an improvement, but then unfortunately, I had to undergo radiation therapy, and then things started going backwards again.  For me, the triggers tend to be lying/sitting down, stress and exposure to excess stimulation (that then triggers by vestibular reaction and then the skull pain).  But sometimes, there seems to be no link at all.  unfortunately, once I get them, my episodes can last for days   Everyone certainly is different, so I am still hopeful that things will naturally get better over time, as I also hope that they will for you.  Keep in touch and let me know how you go.

Rita