pachymeningitis

Posted by cgrammie2 @cgrammie2, Aug 11, 2012

We live in Tennessee and my husband has been dia, with a very rare disease called pachy meningitis he is being treated in Nash. Tn. took a long time to get a name for his diease most people and Doctors haven’t ever heard of it he is looking for someone to share stories and treatments with being is has no clinical studies it is so rare! has anyone ever heard or know someone that would be willing to share information about this disease even if you are a professional neuro doctor is ok!!!

Interested in more discussions like this? Go to the Brain & Nervous System group.

@scaredmomma

Hello
Thanks for the reply. Her reoccurring symptoms are pain throughout her spine and body. Tingling in the feet and hands. Her RA number continues to sky rocket. She is now having nose bleeds. She gets bruises all over her body.
Her vision continues to worsen and her liver is in stage 1 failure. They now want to biopsy the tumor in her brain. She has constant headaches.
Her legs gave out on her the other day and she fell down the stairs.
She is in chronic pain always.

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@scaredmomma
I’m so sorry to hear how much pain your daughter is experiencing. I only thing that worked for me was Rituximab Infusions. It last in for about 6-8 months. I am even able to wait about 10-12 months for the next set of infusions. Please let me know if you need more information. Sending your daughter and you healing thoughts and prayers.

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@scaredmomma

Hello
Thanks for the reply. Her reoccurring symptoms are pain throughout her spine and body. Tingling in the feet and hands. Her RA number continues to sky rocket. She is now having nose bleeds. She gets bruises all over her body.
Her vision continues to worsen and her liver is in stage 1 failure. They now want to biopsy the tumor in her brain. She has constant headaches.
Her legs gave out on her the other day and she fell down the stairs.
She is in chronic pain always.

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Is she on steroids? I was on dexamethasone for 10 months. After my children insisted the docs at Baptist take me off them, I began to improve. I could not walk, my feet and legs were sooo swollen, I still have no memory of several months, I had to wear a diaper, I could not bathe myself or brush my teeth or hair. My hair thinned and came out..My hearing has gone south, but my vision has improved. My gait is not what it use to be, but most of the time I walk well. I no longer fall. I always fell backward..always. I can no longer ride a bicycle or go for long walks. I still forget things and have anger issues. I also bruised easily..not as much now. However, I have never had a bad headache. Sometimes, now my head feels as though there is pressure on the left side and I become very dizzy. However, I find if I lie down and put my feet up, it goes away in about 20-30 minutes. My last MRI in July showed vast improvement…the steroids were far more damaging to me than Pachy. I will never take them again. Keep us updated on your daughter…Prayers helped me and I will pray for your family.

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@helena49

Is she on steroids? I was on dexamethasone for 10 months. After my children insisted the docs at Baptist take me off them, I began to improve. I could not walk, my feet and legs were sooo swollen, I still have no memory of several months, I had to wear a diaper, I could not bathe myself or brush my teeth or hair. My hair thinned and came out..My hearing has gone south, but my vision has improved. My gait is not what it use to be, but most of the time I walk well. I no longer fall. I always fell backward..always. I can no longer ride a bicycle or go for long walks. I still forget things and have anger issues. I also bruised easily..not as much now. However, I have never had a bad headache. Sometimes, now my head feels as though there is pressure on the left side and I become very dizzy. However, I find if I lie down and put my feet up, it goes away in about 20-30 minutes. My last MRI in July showed vast improvement…the steroids were far more damaging to me than Pachy. I will never take them again. Keep us updated on your daughter…Prayers helped me and I will pray for your family.

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Yes she has been on all sorts of medications but yes now she is on the steroids and they are weeining her down she is not doing well on them either. She is now waiting for I believe its called Imitrex infusions. Thanks for your reply. You are all strong and amazing people.

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@jrt26

@scaredmomma
I’m so sorry to hear how much pain your daughter is experiencing. I only thing that worked for me was Rituximab Infusions. It last in for about 6-8 months. I am even able to wait about 10-12 months for the next set of infusions. Please let me know if you need more information. Sending your daughter and you healing thoughts and prayers.

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Yes this is what they are starting her on now hopefully by next week. Thank you for the input. We're just praying it helps. Good to know that you have had some success. This is good news for both of you. Stay strong you are amazing.

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@amandajro

Hello @scaredmomma and welcome to Mayo Clinic Connect. I am so sorry to hear about your daughter's worsening symptoms, and I certainly understand you are scared.

I am glad to see that @helena49 has already connected with you to share a bit about her experience.

Since you mentioned your interest in coming to Mayo Clinic, I want to share this link to request and appointment. They will review your daughter's medical records and history, and discuss with you treatment options.
http://mayocl.in/1mtmR63
How soon were you hoping to have her seen and are you still in touch with your current doctor on her declining health?

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Thank you I will call and see what they can do to help us. I tried to complete the international form yesterday but it wouldn't work.
Yes she is still being followed by her current doctors.

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@scaredmomma
I believe @colleenyoung may have some additional information to share with you regarding international.

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@scaredmomma

Thank you I will call and see what they can do to help us. I tried to complete the international form yesterday but it wouldn't work.
Yes she is still being followed by her current doctors.

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Hi @scaredmomma, I see you are from Canada. In some cases, when treatment options not available in your province, your provincial healthcare coverage will pay for out of province access. You may wish to contact Mayo Clinic to find out a) if Mayo Clinic can offer treatments that differ from the treatment your daughter is currently receiving and b) if your provincial plan would cover out of province care.

One thing I know for certain is that asking costs nothing. Please contact our Canadian information services at Mayo Clinic https://www.mayoclinic.org/canada

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Thank you so much. I did complete the online application today so hopefully we will hear back soon. Thank you so much for the resources and replys. It gives me some hope.

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My hubby was diagnosed with pachy meningitis finally in Oct 2020. Back in July 2020 he began having terrible trouble with his balance when standing and walking. Since he had some ringing in his ears we started with an ENT. The ENT then referred us to a neurologist who prescribed the MRI that showed pachy meningitis. My hubby has had a lumbar puncture, CT scan, and numerous blood work done. We have ruled out so far bacteria, virus, fungus, autoimmune causes, plus tumors / cancer, etc. We are now seeing an infectious disease doc. My hubby feels like his double vision is getting worse so now we are waiting to see a neural ophthalmologist (there are only 2 in our area of San Antonio). He tried prednisone for a few weeks and it made him feel dizzier than he already is plus the weight gain. No more of that. Thankfully he is not in any pain but he can only walk with a hiking stick, and tires easily. It is good to hear that we’re not the only ones who seem to be “alone” with this diagnoses. Talk about the year 2020- this plus CoVid and everything else! Praying for treatment and complete healing for everyone!

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@lphillips

My hubby was diagnosed with pachy meningitis finally in Oct 2020. Back in July 2020 he began having terrible trouble with his balance when standing and walking. Since he had some ringing in his ears we started with an ENT. The ENT then referred us to a neurologist who prescribed the MRI that showed pachy meningitis. My hubby has had a lumbar puncture, CT scan, and numerous blood work done. We have ruled out so far bacteria, virus, fungus, autoimmune causes, plus tumors / cancer, etc. We are now seeing an infectious disease doc. My hubby feels like his double vision is getting worse so now we are waiting to see a neural ophthalmologist (there are only 2 in our area of San Antonio). He tried prednisone for a few weeks and it made him feel dizzier than he already is plus the weight gain. No more of that. Thankfully he is not in any pain but he can only walk with a hiking stick, and tires easily. It is good to hear that we’re not the only ones who seem to be “alone” with this diagnoses. Talk about the year 2020- this plus CoVid and everything else! Praying for treatment and complete healing for everyone!

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@Iphillips May I asked what part of the dura or brain is affected by the inflammation/Pachymeningitis? Your husband may need to see a neurosurgeon instead that specializes in the brain stem or if anywhere close to the cranial nerves. I was also placed on prednisone 60mg daily taper down for a few months. However, the symptoms and inflammation came right back soon after stopping prednisone. Due to my type 2 diabetes, the team of doctors decided on Rituximab Infusions. So far I’ve had 4 sets on infusions since 2016 and that seems to help for at least 6-12 months. My cranial nerve 6 was affected which permanently moved my left eyeball inwards which caused the double vision. It corrected itself after about 8 months. Neuro Opthalmalogist is also a good next step. I had a neurosurgeon because they first suspected it to be a small meningioma in the cavernous sinus brain stem area. So I was first treated with gamma knife procedure then the growth/inflammation returned after 5 years. Hope some of this information helps you and your husband.

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Hello @lphillips and welcome to Mayo Clinic Connect, a community of members who give and get support from one another. I am sorry to hear about your husband's diagnosis and yet I am happy to hear that he is not in any pain. @jrt26 has shared some information with you that may be helpful already.

What, if anything, can other members offer to support you?

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@jrt26

@Iphillips May I asked what part of the dura or brain is affected by the inflammation/Pachymeningitis? Your husband may need to see a neurosurgeon instead that specializes in the brain stem or if anywhere close to the cranial nerves. I was also placed on prednisone 60mg daily taper down for a few months. However, the symptoms and inflammation came right back soon after stopping prednisone. Due to my type 2 diabetes, the team of doctors decided on Rituximab Infusions. So far I’ve had 4 sets on infusions since 2016 and that seems to help for at least 6-12 months. My cranial nerve 6 was affected which permanently moved my left eyeball inwards which caused the double vision. It corrected itself after about 8 months. Neuro Opthalmalogist is also a good next step. I had a neurosurgeon because they first suspected it to be a small meningioma in the cavernous sinus brain stem area. So I was first treated with gamma knife procedure then the growth/inflammation returned after 5 years. Hope some of this information helps you and your husband.

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Thank you for your information! I am glad to hear that the Rituximab infusions have helped you. The inflammation in my husband's dura seems to affect his left side the most. He feels as if he will fall to the left or backwards when standing. He also has had some numbness in the left side of his face. Waiting patiently for our appt in March.

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