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cgrammie2 (@cgrammie2)

pachymeningitis

Brain & Nervous System | Last Active: Oct 6, 2021 | Replies (82)

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@cgrammie2

Please private message me for my contact information likeI said we live in Tennessee and would love to talk with others and share our story and treatments some good others not so good….what works for one might not for the other! Seems it is trial and error!

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Replies to "Please private message me for my contact information likeI said we live in Tennessee and would..."

Hello @cgrammie2. Good to see you back on Connect. You’ll notice a few changes on the site since you last visited.
Please note that I removed your personal phone number from your messages. Connect is a public site and we don’t want you to get unwanted phone calls. For your privacy and security, it is better to send a member a private message to exchange contact information.
Here’s how to send private message.
1. Click the member’s @username.
2. Click the envelope icon in their profile.
3. Write a subject and your message.
4. Click Send Message.

Having said that, by sharing on Connect, you not only help the members with whom you exchange information but also those who read the forums but may not have the courage to post.

CGrammie2, How is your husband managing these days with his diagnosis of pachymeningitis? How are you?

my husband has been in remission for 300+ days headache free, not much going on at the moment he did have aortic valve replaced in 2014. so light is at the end of the tunnel! as for me my health is not what it has been all the stress is playing on my illness RA, H.B., now stage 4 kidney disease? I see a specialist in Jan for the latter. It is going to be either the diabetes or my RA causing the kidney problem. But we will see what can be done with my illnesses. Prayers for all with these rare diseases, praying they find what is causing and how to treat them! Thanks for asking, Debbie and Ray

Stress certainly does play havoc on our health and caregiving is a taxing job. You may be interested in exploring other groups on Connect in relation to the conditions that you are managing, for example see discussions about

– RA in Autoimmune Diseases group https://connect.mayoclinic.org/group/autoimmune-diseases/
– Stage 4 kidney disease in the Kidney & Bladder group https://connect.mayoclinic.org/group/kidney-conditions/
– Caregiver in the Caregivers group https://connect.mayoclinic.org/group/caregivers/
– Aortic valve replacement in the Heart & Blood Health group https://connect.mayoclinic.org/group/heart-blood-vessel-conditions/

Let me know if you’re looking for anything in particular.

I have recently been diagnosed. Had a MRI to search for reasons my hearing has declined, and dura mater thickening was discovered. Constant mild headache and some neck pain. Also eyes feel tired constantly. I see that you have been on the forum since 2012. My neurologist took a wait and see approach as I didn’t have a headache then. I would like to find a teaching hospital that has some experience pachy meningitis. Do you have any suggestions?

Hi @tracyb
My doctors are at UCSF San Francisco CA. I think I am the most recent and probably only case of Pachymeningitis. It was first thought to be a meningioma and I had two gamma knife treatments within 5 years. The shooting pains got worse and always trouble with my eyes and numbness on the right side of my face. Then in October 2016 the MRI should inflammation all over my dura. They did a mini craniotomy to get a biopsy and that is when I was diagnosed with Pachymeningitis. I was placed on prednisone for a few months and then had rituximab Infusion x2 last month. So far the pain has been subsiding daily. The prednisone side effects are the only downfall and I’ve been off prednisone since 2 weeks ago. Getting better slowly.

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