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Pain after sucessful MVD surgery, is it permanent?

Posted , 4 users are following.

fawzia911
fawzia911

Hi Everyone,

I don’t have TN, but my dear sister does. she’s a gentle soul; doesn’t like to search or read posts about TN as reading about people suffering like her makes her pain that much harder to bear. I’m writing here on her behave and only passing the positive things I find to her.

My sister had TN for almost 4 years. Last year her medication was making her even more sick and doing nothing for the pain; she was only taking a very high dosage of Lyrica, as she was allergic to tegretol. So, finally she had the MVD surgery last March.

She recovered from the surgery and she was completely pain free. No pain, No numbness no discomfort what sobever. We were all ecstatic. Her first comment when she was out hospital was “everything looks very bright and colourful” not that she didn’t see colour before, but the pain was tinting everything for her before.  

2month post-op and everything was going great, she decided to have a tooth filling that she couldn’t do for the last two year and it’s on the same side of TN pain.

Guess what?  the pain was back two days after. The stabbing electric shock like pain when she talks or eats she also start to have the cold sore around her mouth that she used to get when the pain is so severe.

 This been going on for a week now. We went to see her neurologist and he asked her if she can touch her right side of face without any pain or tenderness and she said yes. Which is something she couldn’t do before the surgery. He concluded that the source of pain is not the Trigminal nerve but rather a phantom pain or learned pain that her brain remembered after she had her dental work and it may settle down eventfully. We don’t know if or when it will go away.

She was very depressed when the pain came back after MVD and that alone may have increased her pain level even more. But since we saw the Neurologist, and he told her it may go away on its own. She felt a little better.

She still refuses to take any more Lyrica meds because of its side effect. She said she wants to go on as much as she can without any meds until it hopefully settles down.

I’m bit worried about her; when she’s in pain she doesn’t talk much and she stops eating. The months leading up to her surgery her pain was so bad even with medication that she would have only small glass of milk for the whole day nothing else. She was very weak, very anaemic.

Can you please Advise me if anyone of you experienced this phantom pain after MVD? Has it gone away? Does it get worse over time?? What to do you do about it?

I wish anyone who’s reading this who has any kind of TN pain, a full recovery and an immediate relieve of this horrible condition. My thoughts and prayer with you all.

 

Fawzia 

0 likes, 3 replies

3 Replies

  • colin69485
    colin69485 fawzia911

    Posted

    Firstly, well-done for making the effort to support your sister. I'm sure your love will be so important to her recovery. Your letter is complex and contains many issues, so I would advice on just one - eating. Your sister will greatly increase the chances of seeing improvements in her health if she focuses on her diet. Encourage her to take nutritional drinks, these can be prescribed, bought from a pharmacist or health shop. All the praying in the world won't provide her with the basic chemicals her body needs.  

    She must eat, then help her to relax and exercise. Take it from there.

  • army183
    army183 fawzia911

    Posted

    Hi Fawzia

    Thanks for your message and the response from Colin is almost exactly what I was going to say. His comments are very true. 

    One thing, you mentioned return of a cold-sore. How long did they last? That symptom is entirely due to re-activation of Herpes Simplex virus which lodges in a latent form in the region of the Trigeminal ganglion (that’s in cranial nerve number 5). Several people have cold sores and they’re all due to herpes reactivation.  These viruses are very common and everyone has them - but not everyone suffers from cold sores. The virus travels down the cranial nerve to the skin near the lip and produces a small sore. It does this when you are under stress. After the cold sore resolves, the pesky virus trundles back up the nerve and lies in wait in the ganglion. It can be reactivated many times throughout your life. 

    So in your sisters case, the herpes syndrome is a result of stress. Stress can mean many things of course, and TN is a likely cause. 

    This should not, in itself, cause pain in any branch of the Trigeminal nerve (there are 3). 

    Keep safe

    Big D

  • wannahelp2017
    wannahelp2017 fawzia911

    Posted

    Good morning 

    I just read your message and I just want to say that I am experiencing the same thing as your sister. I had the Cyberknife procedure about 4 months ago after the procedure I had extreme pain for about a week and a half but then I was pain free. So Friday I thought I felt a slight pain but kinda pushed the thought out of my head then Saturday I got a “hit” it’s back. I haven’t seen a doctor yet due to it being a holiday and my pain starting on a weekend but hopefully it is a “phantom” pain from my blood pressure being extremely high this week due to some family issues. I’m praying for her and myself that it goes away. I’m the same as her I don’t eat or drink or talk just lay in bed. I have tried to drink Gatorade and I ate some applesauce and pudding so that’s at least a start. 

    Hoping for the best I know it’s fristrating bc you think that once you have these procedures that’s it all fixed then this.... 

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