Small update. At this point in the fight it’s too early to call, but I hope in the later rounds things improve.
Things have settled in a bit, and improvement has slowed. . Brusing is gone and most of the numbness. Area of concern is berth the eye on the upper part of the cheek the area is stil very tender and slightly numb with altered sensation. More distressing is for the last week there is relatively constant tingling, pain and strange sensations. However this feels a bit different that what I had before, and its only occurring in the surgical area. What is odd I can command the pain and tingling to start if I move my cheek around. My hope is that that this is just “collateral damage” to the nerves in the cheek being manipulated during surgery, and will calm down in a few weeks (hopefully sooner). Right now I suppose I need to be more patient because I’m only two weeks out.
Trish said:
Hi Joe, Good to hear from you. Although the progress is slow it is good to hear there are positive signs which sound promising. I hope you are taking it easy and I shall continue to send you healing thoughts. Take care Hugs Trish
Good to hear you’re making progress-
I laughed when I read you can “command the pain and tingling to start” if you move the cheek around. Can you command it to stop?! Just teasing. It’s interesting though. Hopefully residual tenderness from surgery.
I’ve spent a few days on Whidby Island, it’s a real treat. My island is part of that same chain of islands, but much smaller and less spectacular, although pretty darn nice. Disney World is fun but the islands and Pacific NW have splendour, like your islands. Sounds like you’ve been involved in protecting them.
I apologize for my long absence. I was sick of myself sounding like a broken record as progress has been painfully slow.
I am over 3 month since the surgery date, and I am happy to report I have around a 40-50% reduction in pain. My face is still “gummy” feeling and there are small pricks of pain, but overall I have a good improvement so far.
The Question is at this point if what I am feeling is from the surgery itself, if it’s the entrapped and damaged nerve still healing, or a combination of the two. Regardless, only thing to do is to wait for it to heal. The Dr who performed the surgery doesn’t want to see me again till March to asses, which I think realistic. Common theme around here is a year for the nerves to heal fully.
I got to discuss in more detail the surgery, and there was scaring on the “posteriror” the bone as well as some scaring adhering to the infraorbital nerve itself. The scaring was removed and an injection of steroid was given to prevent re-scaring, so the procedure ended up being similar to the medical studies I found. There was also a small fracture on the bone near the nerve. The Doctor in the end was glad he went in despite with the lack of radiological evidence (and I was too!).
Given you could probably count on your hand the number of people in the world who have had this specific procedure, I feel very blessed so far with the surgery and the result so far. I am hoping I can continue to heal and eventually become pain and symptom free.
I also hope this helpful to people who have TN2, ATN, TNP, etc from trauma, . In a Nutshell if you have had trauma to the face and now have pain, it could be scar tissue compressing on the nerve roots themselves. It is even possible to the pain not to happen till weeks, months, or years later when the scar tissue finally entraps the nerve. If this happens, then it is possible for the nerve to be freed of the scar tissue. There are specifics to each branch of the trigeminal nerve and each case would be different, but it is at least something to possibly discuss with a medical professional I’ll be sure to update my progress as it goes, though as mentioned it might be a while till the next level of improvement (if any)!
Great to read your update Joe!
Continued healing that results in even more of a reduction in pain.
I really appreciate your sharing your story.
Best wishes, looking forward to hearing from you again!
Mimi
Hi Joe
Thanks for the update. It’s really heartening to hear that you’ve had a reduction of pain over the three months. Cheering you on an even greater reduction by March. Ad thanks for info on entrapment of nerve in scar tissue, etc.
I've had just a very small improvement since last time, I'm pretty much in the same boat (just moved up a seat maybe!) There are moment when if a look the right way or lay down at a certain angle I feel like I have a normal face almost pain free face. Other times I can still feel a prickly unpleasant sensation. Blasted cold doesn't seem to be helping any either.
Most of the pain is located on the eyelid and upper cheek/ area. That is where the incision was and the skin was pretty much peeled off the face to get at the nerve, so I hope it just healing. Only surgery to really to compare it to in terms of what was done to the face is cosmetic eyelid surgery or a facelift, and everyone seems to indicate it takes 6-12 months for those odd sensations to dissipate as the scar tissue softens and the nerves in the face hook up. I am nearing month 6 so I hope I really see some more improvement soon. Surgeon does not want to see me till March to give an idea how long it might take. Overall, still an incredible improvement and much better, and I am very grateful.
One note/correction-I mentioned the last time if you've had trauma the pain could be from scar tissue compressing on the nerve root itself. I actually meant nerve branch or peripheral nerve, so away from the trigeminal "root" where a typical MVD is preformed. Though I suspect if you'd have trauma on the nerve root, you'd have the same issue. My procedure specifically was decompression of the nerve and removal of scar tissue where the trauma was, not at the nerve root.
I was enjoying the fall and took lots of pictures, did lots of hiking so not much painting then. With the cold I am stuck inside so I started again. Here is a painting I was working on and finished a week ago.
I saw you had and MVD and, a, very glad to hear it sounds like a positive step for you. I hope you continue to improve as well with time. Might be slow going at points but if they nipped the main cause in the butt, hopefully it's just time for these poor nerves to heal all the way.
Take Care,
Joe
Bellalarke said:
Hi Joe Thanks for the update. It's really heartening to hear that you've had a reduction of pain over the three months. Cheering you on an even greater reduction by March. Ad thanks for info on entrapment of nerve in scar tissue, etc.
