Home Forums Support and Opinion Forums Open Discussion Forum Trigeminal Schwannoma – Anybody have/had one of these?

This topic contains 15 replies, has 1 voice, and was last updated by September 28, 2017 at 3:24 pm.

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  • #1170 Score: 0

    Herb F

    The only surgical fix for my damaged trigeminal nerve is an implanted nerve stimulator. It sounds too scary for me to attempt right now.

  • #1168 Score: 0

    Inspired

    Lisa, the neurosurgeons I know are in NYC. Sorry I can’t help you with a recommendation. Have you found an experienced neurosurgeon yet? Good luck in your search.
    Inspired

  • #1166 Score: 0

    Herb F

    I’m being referred to a neurologist at Johns Hopkins to discuss a rhizotomy to alleviate the burning in my right eye. I’m told this is non invasive and involves either injecting or radiation of the trigeminal ganglion. Anyone heard of this procedure?

  • #1164 Score: 0

    Karla N

    Hello all. I am new to IJB & still learning to navigate the site. I thought I had posted a (long winded ) reply last week, but alas it’s not here. I need to make this brief because I have a follow up MD appointment. I, too, like Herb had a trigemminal schawannoma. I had it debulked July 2014. I just wanted to join in on the discussion. I’ll be back to share more later

  • #1156 Score: 0

    Inspired

    How is everyone doing post surgery or post-procedure?
    Inspired

    • #1158 Score: 0

      Herb F

      My annual MRI in February showed the tumor to be gradually shrinking and my nuerosurgeon suggests it will continue to die off. The facial numbness and burning in my right eye is still very much there. I’ll be seeing a neuro-eye specialist at Johns Hopkins on May 20th, but I’m not expecting much. After all, three neuro-eye specialists have all told me my only relief is going to be eye drops.

      • #1160 Score: 0

        Inspired

        Herb, I was at a support group tonight & one of the guys had surgery 9 years ago. Since then, he hasn’t been able to open one side of his mouth, had numbness on one side of face, and couldn’t feel if food he was eating was dribbling down his chin.
        He has experienced slight improvements over the years. Tonight the told us that 3 days ago, he was able to open the other side of his mouth! And 3 days later, it’s still working!.
        Isn’t neuro plasticity cool. After 9 years. Wow

        • #1162 Score: 0

          Herb F

          I’ve had the same frustration the past three years especially when not taking enough time when eating. It’s embarrassing when I have to keep wiping my chin. Hope it doesn’t take nine years to come back, though! Trigeminal nerve damage sucks!

  • #1154 Score: 0

    Michelle O

    Hi Lisa: It’s been three months since I had my Schwannoma removed. I found out that there are those who are candidates for surgery and other that are a candidate for Gamma Knife. Of course, Gamma Knife is preferable if possible. I was told because of the size and location of my tumor, I was not a candidate for the less invasive Gamma Knife treatment. It was suggested to me to find a teaching hospital with excellent surgeons. I used the Internet to find surgeons who had published articles dealing with my specific diagnosis. I found that the University of Utah Medical Center offered me the best opportunity for successful surgery. John Hopkins is remarkable, but make sure you do your homework on the surgeons and choose someone with experience, should you need surgery. If anything, to add to your comfort level of being in good hands will help. Hopefully you will not and Gamma Knife will be an option.

  • #1146 Score: 0

    Shirley M

    They think I have one. (They also said it could be a meningioma.) It was found last year when I had a MRI trying to find out what was causing trigeminal neuralgia. I’ve had follow up MRIs and they don’t think it’s growing too fast. I had a copy of an MRI from January 2010 when I had a week long headache. The tumor was not there then, so they know it’s only a few years old. The doctors at University of Chicago are in no hurry to take it out. Mine is in the Meckel Cave area and difficult to get to. They are trying to control the pain of the trigeminal neuralgia with meds. If I exhaust all the different types of meds they will finally do surgery. Mine is 1.9 x 1.9 x .6 cm.

    • #1148 Score: 0

      Herb F

      Have you discussed Gamma Knife with your n/s? It’s non-invasive. I understand it’s an option with tumors less than 3 cm. Dr. Danish is one of the doctors who are on this website. I have consulted with him and will probably have the balance of my tumor radiated with this procedure sometime this spring. Meds didn’t work for my symptoms. They just make me too tired. Dr. Danish told me Gamma Knife might not alleviate my symptoms either, facial numbness, burning in right eye, but he recommends it as a preventative so the tumor won’t ever grow back. It’s sounds like you are getting great care, though!

      • #1150 Score: 0

        Shirley M

        I have begged for gamma knife! I’m not having any luck with the meds and they’ve told me that nothing will help with the numbness. I feel like a zombie on the meds. My theory is if they’re going to eventually take it out, why not now?

        • #1152 Score: 0

          Herb F

          The neurosurgeon who did my original surgery on 6/6/12 wanted to wait on this too. When I told him Dr. Danish was recommending it right away, he did not disagree. Doctors tend to practice the way they were taught in medical school and Gamma Knife is new-fangled technology. My hunch is your doctor hasn’t done a lot of Gamma Knife procedures. Find a Gamma Knife center where that’s all they do. Dr. Danish actually teaches it at Rutgers Medical School. You need to seek out a second opinion (in my opinion).

  • #1142 Score: 0

    Herb F

    My trigeminal schwannoma, notoriously known for its slow growing nature, had apparently been there for my whole life, undiscovered until I was 59. But then, when it was discovered at over 3 cm, it was pressing on my brain stem and could have caused a fatal stroke, seizure, or heart attack. So I had surgery within a few days. About 85% of this benign tumor was removed and all MRIs since 6/6/12 have shown no further growth. Last week a neurosurgeon recommended having a Gamma Knife procedure done to get rid of the rest of the tumor to prevent it from ever growing back. I may wait it out on this one. The n/s who performed my original surgery doesn’t think any further treatment is indicated. And even the Gamma Knife doctor told me not to expect this procedure to alleviate the numbness on the right side of my face or the burning sensation in my right eye. So, Lisa, if your tumor is not more than 3 cm and is not pressing against the brain stem you may be a candidate for the Gamma Knife, which is non-invasive. I’m sure you’d get the best at Johns Hopkins. Welcome to the group!

    • #1144 Score: 0

      Lisa

      Thanks Herb! It’s really been tough finding anyone who has had one of these!

  • #1140 Score: 0

    Lisa

    Anybody have/had one of these? Just got diagnosed and starting the process of finding an experienced neurosurgeon and center. I live in Baltimore so will definitely look at Hopkins.

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