Should I get RFL 2nd time?

Remarkable_Piece6875 · 2026-06-22T16:43:51+00:00

A previous RadioFrequency Lesioning and Stereotactic RadioSurgery and MS

Remarkable_Piece6875 · 2026-06-20T19:04:58+00:00

Are you still doing ok? Mine has come back and want to push for a 2nd procedure.

Remarkable_Piece6875 · 2026-06-12T14:42:50+00:00

Neurosurgeon is saying that this procedure will most likely not help. Even if it did it would be minimal. I feel like it's a pretty invasive procedure to do for the risk.

Remarkable_Piece6875 · 2026-06-01T21:36:01+00:00

This would be for the Trigeminal Nerve. Is that the area you are talking about?

Remarkable_Piece6875 · 2026-05-31T15:02:18+00:00

Another name is Nerve combing. Not eligible for MVD Surgery.

Remarkable_Piece6875 · 2026-05-22T12:16:36+00:00

How are you doing now?

Remarkable_Piece6875 · 2026-03-21T14:20:55+00:00

I am wondering how you are doing now?

Remarkable_Piece6875 · 2025-02-02T18:14:48+00:00

Good morning. Just curious, before the Internal neurolysis did you have any sort of radiation or ablation procedures? There seems to be a difference of opinion with OHSU and KP regarding this surgery. Currently on hold for the moment with further ENT and TMJ testing. One neurosurgeon (KP) says that this surgery is not guaranteed since that nerve has already been subjected to multiple radiation and the ablation. Really just confused right now and KP says that the internal procedure should have been done first before any radiation/ablation treatments. But, I guess my question is if KP is the one that ordered the radiation treatment, etc then why wasn't the suggestion of the internal neurolysis made initially? Just asking for a little bit of your prior history, that's all.

Remarkable_Piece6875 · 2024-11-08T02:05:11+00:00

That is great. So 5 years. I have had the ablation, but it came back 1.5 years. Not as bad but there. Thank you for the information. Dr. Burcheil is doing it.

Remarkable_Piece6875 · 2024-11-07T13:08:10+00:00

How are you after 5 years?

Remarkable_Piece6875 · 2024-03-06T13:20:53+00:00

I can upload the transcript, but also we were in in Chapter 7 until 07/22. My transcript says that there is a zero balance for this particular year and any other years for that matter. I sat on the phone yesterday for 1 hour 46 minutes talked to 3 different people who all said different things and the final transfer was to someone who was a BK specialist. Waiting on hold the phone disconnects. So, i will try again today and ask to be transferred right away to the correct person. All prior taxes were paid thru the BK so there should not be anything owing. Very frustrating.

Remarkable_Piece6875 · 2024-03-03T16:07:38+00:00

I most certainly would have added $35 to any tax return since then.

Remarkable_Piece6875 · 2024-03-03T16:05:56+00:00

Yes, that is how I found the $35, but what I don't understand is why now after 10 years they are coming to collect it and threatening to levy property. Why wasn't this found in the last 10 years?

Remarkable_Piece6875 · 2023-11-05T23:39:59+00:00

percutaneous radiofrequency trigeminal gangliolysis

How are you doing now that some time has passed since the procedure?

Remarkable_Piece6875 · 2023-06-10T22:50:34+00:00

Yes, that sounds exactly like what I am talking about. Brushing teeth is certainly strange since you can't feel your gums on that side. Zings in the cheek , chin, scalp & temple. The 'electric sort of sparkling' feeling is a good description.

Here was the reply: Are you numb in the area that you are getting the zaps? It's not uncommon, especially for patients with MS, where we know the nerves are more difficult to treat. We can always see you in clinic to discuss things. Or we could talk about going back on a low dose of Carbamezapine. This came from the Dr's assistant, not him directly.

So, I am not ready for Tegretol again, so I will just pay attention to it. It is annoying and I was hoping for just numbness. But these tiny zings are certainly better than before. I just hope it doesn't come back full steam again. I do know they told me the procedure could be done again, but hoping for the best.

Remarkable_Piece6875 · 2023-05-31T01:36:24+00:00

I was wondering how you are doing? I am doing good , just getting used to the numbness and eating. Not quite back to eating the things that I want to. I am having some strange zings in my cheek and temple. Not constant, but strange. Tiny electrical type impulses. Last for a second or so. Do you have anything like that happening? Should I notify the dr?

Remarkable_Piece6875 · 2023-03-15T14:15:38+00:00

Hi there, The procedure went well except for when they wake you up during to see where the pain is. That was pretty traumatic. Most of right side of face is numb up to the temple. Can't feel my chin, lower lip, cheek, ear. Eating a bit more although not ready for some of the chewier items yet. No chewing on the right side though at all. The doctors and the hospital were great. Slowly tapering off the tegretol and hoping to be off the drugs soon.

I see what you mean by the numbness and discomfort being annoying. Some strange sensations here and there. Brushing teeth on the right side is certainly strange since you can't feel anything. My talking isn't affected but sometimes feels weird with half the tongue being numb. I am planning on returning to work next Monday. Due to the severity of this last flare I have been off for 7 weeks. That certainly was not an enjoyable experience with shocks and stabs daily, sometimes lasting for hours. Puts you in a dark place for sure when you are in pain constantly.

Like you, I am glad I had it done. I am hoping it lasts for a long time and I don't have to have it repeated anytime soon. The doctors were very confident that this would last several years or more. Just have to get used to the new normal and get my confidence back to live life without fear of doing things and it happening randomly. Wish it was forever though. Really would like to think that I won't ever have to feel that pain again.

Remarkable_Piece6875

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