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manda420

595d

I have three meniginomas just recently found on a CT scan just wondering what my next steps are a craniotomy seems to be the recommended course of treatment or to observe and scan again in 6 Mos but I also have PAH wondering if a wait a see approach could be a mistake because if the PAH gets worse and can't handle surgery

Top reply
    • Trumpet_Man

      361d

      See if they can do gamma knife or Cyber knife surgery-less invasive

    • Trumpet_Man

      361d

      See if they can do gamma knife or Cyber knife surgery-less invasive

    • manda420

      587d

      The pulmonary arterial hypertension also Makes it difficult somedays too to tired to do anything

      • Mamasboys

        583d

        @manda420 yes I can imagine I have issues with exhaustion and pain which is so frustrating

    • manda420

      590d

      I already have the pah so ya getting the news of the 3 meniginomas was like getting hit by a truck i have family that doesn't see it as serious and just writes it off i don't wanna scare my other half so i really have no one to talk to either so I doesn't help

      • Mamasboys

        590d

        @manda420 I understand 😥 I’ve been there. It’s numbing to say the least. I didn’t have much support and I also have other illnesses now and it has changed so much in my life. If you ever want to talk you can send me a direct message and if I can be of any help please let me know.

    • Mamasboys

      590d

      I just want to tell you that it’s really important to see a neurologist and neurosurgeon if you’re deciding to go with a craniotomy I mean that’s what they do they do brain surgery so they’re going to push that that’s why I seeing a neurologist first and getting the MRI is going to be your best but I can only speak from experience and that was the process that I went through

    • manda420

      592d

      They found them when my primary doctor sent me to the er while at an appointment blood pressure was really high was worried about heartattack and stroke so the did a cat scan all I've been told is that I have three meniginomas and doing blood tests tommorow I can't remember the name of the tests but aren't ordinary he had to call the lab to order them I kind feel sorry for him think he was seeing it for the first time too and didn't know what to tell me since he didn't really know anything either so I've been googling witch I know I shouldn't do but tried to stay on reputable sites like mayo clinic and John's Hopkins they both say that craniotomy is a common treatment and they make a craniotomy sound like getting your appendix out don't think radiation will be and option in a small town have too go to salt lake for them and I don't drive and already on disability so it would be hard to get back and forth plus with right heart damage and the pulmonary arterial hypertension waiting could be risky just can't wait to have all the answer's

      • Mamasboys

        590d

        @manda420 yes of course you want answers. I remember when they first told me it was like a got hit by a truck.

    • Mamasboys

      593d

      How did you find them ?

    • manda420

      594d

      Pulmonary arterial hypertension with lung disease is what PAH stands for I'm in a small town so hard to get different opinions here and I don't drive anymore but I trust my heart and primary doctor not gonna lie scared to do the craniotomy but it seems like the most common treatment for them scared to wait and see because the PAH could get to a point that my heart won't handle surgery then I'd have to deal with both just alot of decisions

      • Mamasboys

        593d

        @manda420 yes it is a hard decision and it took me over a year to make it. It’s really important to see a neurosurgeon and neurologist. Have you had an mri yet and have they explained things to you. If they are small you have fhe option of radiation to shrink them possible. It’s less invasive than surgery

    • Mamasboys

      594d

      Hi I’m sorry for what your going through. I have a Meningioma also and had a craniotomy in 2018 they weren’t able to resection the entire tumor so I still have about 30% in there. My advice would be to get multiple opinions from neurologist and neurosurgeons. Try to find ones that specialize in tumors. I was on wait and watch for a year and half because I wasn’t ready to have a craniotomy. But once I started loosing my vision I decided to do it. I got 3 opinions and prayed a lot. I don’t know what PAH is? Where do you live ?

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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