TN starting on the other side

General
1

I’ve had TN on 1 side for about 3 years. I have types I and II pain, also some patches of numbness. I take gabapentin which definitely helps, doesn’t go away completely of course. Trileptal did help, but sadly I developed an allergic reaction with a crazy rash.

My first MRI 3 years ago was normal.

I had a repeat MRI this year because I was thinking about Gamma Knife. So sick of this, right? My new MRI showed a vein touching the nerve and ]my neurologist, the Gamma Knife radiation doc, and a neurosurgeon all recommended MVD. So I’m freaked out about the whole intracranial drilling and all that, but I feel like I have an answer and a solution and I’m like “Ok, let’s do this.” And surgery is tentatively scheduled in 2 months.

And then… like something out of a nightmare… I start getting some zaps on the other side. And I think I must literally be one of those hypochondriacs who has a deeper psychiatric issue imagining this crap up to avoid surgery, but no, it continues to get worse and I was having the deeper stabbing pains that just couldn’t be denied. Also the original side was worse.

My neurologist recommended 2 weeks of prednisone, and while the pain is not gone, it has lessened on the 2nd side. There is a new annoying patch on my original side as well that refuses to be calmed.

I’m going to put off the surgery for now. But it’s so frustrating. The timing is ridiculous and I have to wonder if the stress of reading and researching and thinking about the MVD set off the other side (“set off” how?). I just feel so helpless to some disease that I can’t understand. And my doctors don’t really understand either.

I have a couple of autoimmune things that might be related (Sjogren’s, Raynaud’s, chronic hives), but still no one can say exactly what it is. Not MS so far, and bless those of you who have that!

It can be so easy to get down and depressed and lonely. Such a lonely disease! You don’t want to complain to your family because it makes them sad. I’m a bit of a silent reader on the website, but thank you for being fighters, you really inspire me.

I wish we able to help more actively with research. Does anyone want to study me?!! I’m here.

I’m just gonna keep doing what I’m doing. Love my kiddos and hubby, keep working and enjoying intellectual challenge, travel, exercise… do the best I can.

2

We’re with you in all of your struggles. My TN is lots worse lately. The day I went to my doctor to say that I was feeling better than ever, some of my worse pain rolls in. Tie a knot in the rope and hang on!
I will pray for you tonight.

3

Sorry to hear about the change in your TN Annie. It’s very hard to think you might have a solution and then have your hopes dashed. Personally I think that the nerve issues are related to the autoimmune issues, and that they have a lot to do with our current environment, diet, lifestyles, etc…but no one seems to have discovered any type of cure yet. Take care of yourself as best you can and hope that this is maybe just a bad spell.

4

Annie, I am sorry for your pain and frustration. I have TN, Lupus, Sjogren’s, Raynaud’s, etc.
I had MVD surgery and the recovery was very difficult & long. I was pain-free for 4 years & then the lightning bolt pain started up again!
I have exhausted every possible choice of medication other than Gabapentin which is still working presently.
I had a consultation re Gamma Knife, after which I read some horrible experiences people had from this procedure
Wishing you all the best of luck!

5

Hi Bubbie3 & Annie, I just what Bubbie is saying. I also had MVD and to say it was hell is just slightly short. It was really bad. I too had it about 3 years ago and the pain is coming back. Had I of known then what I know now I WOULD NOT of had it. I am so sorry to hear of what you are going through but at least you still have a drug that helps. I don’t know about Bubbie but I ran out of things that would help so I tried the MVD what a mistake. I am now deaf in the right ear, I have terrible right eye pain, I have ZERO feeling on the right side of my face, this causes me not to be able to chew food or keep it in my mouth, my nose runs all the time and I can’t feel it so I go around looking like a baby with snot dripping out. Sound like fun?? Yup. Anyway don’t give up dear, please! Sooner or latter we will get help, truly so hang tough. I know it’s hard to do but I am sure I am right Jehovah promises us this in his word. So I am sure of it.

6

Hang in there, Annie6. I’m so sorry you are going through this. I have type 2 or Atypical, depending on which doc is diagnosing. After trying a wide variety of solutions (Ketamine comas, radiofrequency ablation which was a disaster, meds which gave me allergic reactions, I was not a candidate for MVD) I will be getting an experimental exosome treatment on October 8th. My neurosurgeon claims it has put 3 out of 3 of her TN patients in remission. One of those had the same type of TN I have. So I’m hoping beyond all that this will help me. I am told it takes 1 to 2 weeks to take effect, so I will report back with good or bad news. I am currently on 80mg of oxycodone daily, which no longer helps much. Crossing my fingers and toes and wishing all of us pain-free futures.

7

I agree with you, Ziggy. I have Lyme disease and one of my docs says it is related to TN, but they haven’t yet found the definitive link, so few docs will make this statement.

8

Hi!! I am sorry about all of your pain issues. On your left side, is the pain constant or does it come and go? If it comes and goes, you might want to go ahead and have the MVD. MVD is considered the best way of treating TN1. Even if you are now having pain on the right side, you might want to go ahead and do the surgery on the left. Holding off on it can make the pain on your left side worse and will have no effect on your right side. If your surgeon is a good one and wants to do the MVD on the left, it might be a good idea. Of course, all of this is up to you. The thought of any surgery is scary. Maybe discuss it further with your neurologist and neurosurgeon.

9

Hi wheels4legs
Sorry to see you had such terrible problems after surgery. But you seem to have such hope that things will get better, if not now, in the future because you believe Jehovah says so in his word. I hope so too because this disease is terrible. I would like you to email me and tell me more about the reason for your hope. ■■■■

10


Above is a link to an article about exosome therapy, it is derived from stem cells. The intent is to deliver signals to cells that cause regenerative effects to damaged neural cells.
Please keep us posted.

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Hi Rich, Oh there is no doubt about things will be better when Jehovah gets here. It is promised in the Bible. In Revelation 21:4 He said I will “wipe out every tear from their eyes,and death will be no more, and nether will mourning nor outcry nor pain be anymore. The former things have passed away.”
These are a promise from Jehovah and he can NOT tell a lie. That is why I am so sure of it. I really do believe it since He said it.

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Click Me!

Hi Rich, I sent a replay via the site but I wanted to reply to you here and hope that you will continue to write to me. I do indeed have a great deal of hope and I Know it will be because Jehovah promised it at Revelations 21:4. And since He said it I believe. He can not tell a lie.

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Hi wheels4legs, I don’t know how this website works. When you sent me this email and I reply to you here, does it show up for general viewing or is this conversation between us here private? You sound like a Jehovah’s Witness. Is this true?

Rich1

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Click Me!

Hi Rich1, I don’t think that it goes to general viewing but I’m really not sure. I see the send line is to them and then to me. I believe that they probably read it. I don’t think this conversation is just between us. My email is: ■■■■ That will get it me only and not through them. SO yes I am a Jehovah Witness. (lol) good guess? All aside though I do indeed love Jehovah and I do believe what He has said.

It is so nice to talk with you and I do talk about a lot of things besides Jehovah but He is my God and I do love him. Tell me more about you if you can. Me I am not much. I am a retired Nuclear Engineer, I had a machine dropped on me when we were laying out a new plant and I now get to park near the store doors and get first place in lines lol and I love life and people. I am married for 30+s years to an adorable wife. I have a son that lives in Chicago, Ill, I live in Mountain Home Arkansas. Hope to hear from you again.

Wheels4legs said all that?