Badges (1)

About

Member has chosen to not make this information public.

Pages

Member not yet following any Pages.

Posts (12)

Thu, Mar 14 5:01pm · 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.

Nov 3, 2018 · pachymeningitis in Brain & Nervous System

@gigirambo how are you feeling? Are your B cells very high? For me the steroids helped but the rituximab Infusions x4 has really reduced the inflammation in the dura. So far I’m doing okay and next MRI will be in January. My neurologist says I may not need another rituximab infusion depending on the results and how I’m feeling. I still get occasional shooting pains in my face and eye area but last a few seconds. My eyes are very dry so I use drops a few times per day. So far doing well. Let me know if you have any other specific questions.

Mar 7, 2018 · pachymeningitis in Brain & Nervous System

Thank you Colleen! I knew about this but completely forgot. Thanks again. 🙂

Mar 6, 2018 · pachymeningitis in Brain & Nervous System

So far rituximab is working. My next MRI is tomorrow. The steroids helped while I was on it. I couldn't sleep, always hungry, tired, weak, etc. It drove me crazy plus I am diabetic so my doctor didn't want me on steroids too long. However, as soon as I stopped the steroids the symptoms came right back. That's when I started Rituximab instead.
Totally understand going back and forth to the doctors and they kept referring me to all different doctors. I was in so much pain and thought the doctors thought I was probably going mad! I even ended up in the hospital for chest pains. I had a bad tooth infection and the extraction was delayed due to my chest pains. I also have to mention that with my luck I started to take B12 vitamins over that counter since I was so tired all the time. Then those vitamins were recalled after I was taking it for about 6 weeks due to salmonella or staphylococcus contamination. I was wondering why I was losing weight without tyring and had terrible stomach cramps. Then a year later I was diagnosed with pachymeningitis. Could be related but not sure.
I'll keep you posted on the MRI results and if my neurologist will recommend another round of rituximab probably by end of April. My last infusions were in October 2017. Feel free to send me a private message if you want to get in touch with me.

Mar 6, 2018 · pachymeningitis in Brain & Nervous System

Hi @tracyb and @megmor and cc to @cgrammie2. I was diagnosed November 2016 after a mini craniotomy at UCSF in San Francisco CA. I was being treated for a meningioma in the right cavernous sinus area since June 2009 diagnosed after getting terrible shooting pains and sudden double vision (the meningioma was pressing on the Trigeminal nerve and eye movement nerve). Had gamma knife treatment twice in 5 years. Then the numbness on the right side of my face occurred with dizziness and shooting electric type pain mostly in my eyes. The craniotomy biopsy result was inflammation mostly made up of B cells all around my dura. Was on prednisone 60 mg for about 6-8 weeks taper down. Currently treated for the second time with rituximab Infusions and doing okay. Please let me know how I can help and other questions you may have.

Jun 19, 2017 · pachymeningitis in Brain & Nervous System

Hi @ginmac,
Welcome to this group. I had 2 Infusions of Rituximab in February 14 and 28, 2017. It didn’t work immediately, however, I have been improving at almost 4 months post Infusion. The drug is very expensive and the doctor has to write what other treatments were given and your reaction to the prednisone was. Good luck and ask me any other questions you may have.