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Thu, Jul 23 9:34pm · Cavernous sinus meningioma in Brain Tumor

Hope it continues to shrink. You may have Trigeminal Neuralgia which is one of the Largest cranial nerves in the cavernous sinus area. I had Gamma Knife twice. My NS at UCSF did not recommend surgery. I’m feeling better but have developed inflammation In the dura that could be Tolasa Hunt Syndrome. They are currently diagnosing it as Idiopathic Pachymeningitis. Prednisone taper down worked but came back as soon as I stopped the prednisone so I was given Rituximab infusions every 12-18 months. I just had my third set of Rituximab infusions this month and feeling better now.

Tue, Jul 21 2:31pm · pachymeningitis in Brain & Nervous System

@tracyb I haven’t had any side affects at all. Only thing is I have to be very careful around young kids and now with covid. So distancing myself and self quarantine as much as possible since my immune system is low for the next 6-9 months.

Mon, Jul 20 10:36pm · pachymeningitis in Brain & Nervous System

@tracyb I have PPO insurance and they first denied rituximab because they wanted me to try other medication like azathioprine, however, my doctor spoke to the insurance provider due to my type 2 diabetes, other medical issues and the extent of the Pachymeningitis which spread throughout the dura (right and left side). If your doctor can give the insurance a good case on starting with rituximab then it should be approved. If not, I also had called Genetec directly and they were willOmg to help pay or even pay in full If you qualify. The drug cost over $15k. I’m not sure how much the hospital charges for their cost of the infusion. Hope this helps.

Fri, Jul 17 5:44pm · pachymeningitis in Brain & Nervous System

I haven’t been diagnosed with seizures or epilepsy. The shooting pains from TRigeminal neuralgia seems like seizures but I don’t think they are since my doctors haven’t mentioned that.

Fri, Jul 17 5:41pm · pachymeningitis in Brain & Nervous System

Hi @helena49
I live in San Francisco Bay Area and was also diagnosed with ideopathic Pachymeningitis In 2016. They first thought it was meningioma in the cavernous sinus area affecting the TN and a few other cranial nerves. Treated twice with gamma knife, however, after the second gamma knife in 2014 I did not feel well for over two years. Dizziness, shooting pains, headaches, blurry vision, hearing loss and facial numbness. The inflammation spread throughout my dura(right and left side) and a craniotomy was performed for a biopsy. Treated with steriods for 6 weeks and felt a little better but came right back plus i have type 2
Diabetes. Then treated with rituximab infusions x3 and so far that works but I need treatment every 12-18 months. Let me know if you have any questions.
Thanks,
Joyce

Mar 14, 2019 · Cavernous sinus meningioma in Brain Tumor

@julieannarcand Sorry to hear you have this cavernous sinus meningioma. Mine did not wrap around the carotid artery. It was discovered after my eyes crossed and had double vision as well as
Shooting pains in my right eye and face. I went to UCSF and the neurosurgeon recommended gamma knife which helped for the next 5 years. My vision returned to normal after 5-6 months and no facial pains or shooting pin like pains in my eye. Let me know if you have any specific questions. Since I did experience new growth after 5 years.

Dec 10, 2018 · pachymeningitis in Brain & Nervous System

See post below.

Dec 10, 2018 · pachymeningitis in Brain & Nervous System

Hi @grand7jud
We are here for you and your hubby if you have any questions. The prednisone should start helping. I was started on prednisone 60mg and tapered down to 5mg for about 6-8 weeks. However I have type 2 diabetes so being on prednisone long term was not an option. Symptoms of facial numbness and shooting pains started again after I finished the prednisone treatment. So my doctor recommended Rituximab Infusions which has helped tremendously. I’ve had two sets of Rituximab Infusions so far and having an MRI in January. I’m not sure if I will need another set of Infusions because I’m feeling okay so far. Last one was a year ago. We are here for you and available to assist in anyway. It’s very difficult to go through this feeing alone since it’s so rare.