I have surgery booked in Melbourne with Alf Naatri Oralmaxilofacial Surgeon.
He hasn’t operated on this procedure before but is willing and an experienced surgeon.
Surgery booked 29/4 and I have been suffering with this for 8 ye a range now, not tried any treatment seeing as it wasn’t until I saw All that I was diagnosed diagnosed.
He is going in via the neck and said it will leave a Noticeable scar. I’m not sure if I have vascular or classic. Do I need to know this and how is it diagnosed?
I am still sceptical about the surgery because as the surgeon explained it’s rather invasive, and there’s a small risk of a nerve being damaged (the one that makes you frown).
No I’m still apprehensive!!! Despite all of the pain I’m in. Despite being so grateful that a surgeon has finally diagnosed me and listened to me and is willing to help.
Anyway, I’ve just recently heard about prolotherapy as another potential treatment. Has anyone tried this with any success? Am thinking about trying one last not so invasive thing before going ahead.
My understanding of prolotherapy is that it is for tissue pain, not nerve pain, but I am not a doctor. Perhaps someone else on this site has tried it and has better information to share. We never tried that and none of the medicines or alternative therapy we tried over the years worked either. Nothing worked for my son except the surgery.
As far as vascular vs. classic, no one ever made that distinction for my son. My son's scars are not that noticeable and quite frankly, if you are out of pain, do the scars really matter? He does have some numbness in his jaw line but again, it is worth the trade off and it has gotten better over the months following surgery. Although my son had fantastic results from the surgery, whenever his immune system is compromised, his pain returns. We are working through some theories on this, one being Lyme disease and babesia.
Results vary greatly and most seem thrilled with the results. Good luck and stay positive.
Am only sharing what Dr. Garvis (MN) said about doing it externally. There's a risk in damaging a facial muscle and why take that risk. From what I've heard, he is very good w/lots of experience.
I once did Prolo for my tmjd and it didn't help much, but then all of us are different.
I advocate for the external approach as it provides the surgeon w/ better access to the styloids & better visiblity in the work area i.e. the best opportunity to see and move important nerves/vascular tissues out of the way. Yes, the nerves may get stretched a bit & temporarily damaged in the process, but they do heal w/ time, & it's better than having them get cut because the surgeon can't see them at all as is the case w/ the intraoral surgery. I've had one external surgery & my surgeon (Dr. Samji) was careful to cut along a crease in my neck. Now that I'm healed my scar is barely visible. I do still have some residual pain & numbness in my face, but this does not affect my quality of life at all. I'm having my second external surgery May 11 to shorten my other styloid & remove the stylohyoid ligament. Can't wait!! So looking forward to the end of the neck, throat, ear, jaw, eye & head pain & the dizziness, tongue, gum & swallowing issues.
If your surgeon is willing to make a long distance phone call, he could consult with Dr. Samji (who has done more than 100 of these surgeries) before he operates on you. Here's Dr. Samji's contact info - Dr. Hussein Samji - 408-■■■■■■■■ (don't know what international code has to be dialed in front of that ph #). I don't have Dr. Samji's email address but his medical assistant Kimberly Elliott can be reached at ■■■■■■■■■■■■■■■■■■■■■■. Just a suggestion.
My heart & prayers go out to you. These are difficult decisions to make!
We are here for each other in whatever capacity we can be to help, encourage, inform, support, & provide electronic hugs when needed. So glad you found the site!
Consider yourself hugged!
:)
Emipie said:
Thank you so much Isiah. I will give my Dr your doctors details. I hope I am doing the right thing. This forum has been so helpfull.
I just wanted to add a couple of thoughts. The first being that my surgeon had never performed this particular procedure before either, but does have many years experience in head/neck surgery (I think about 15 years). He did a more than excellent job and I am very pleased. The most important thing is that they are an experienced surgeon in areas of the head & neck. Secondly, I did have some facial weakness on left side, and although it is a temporary inconvenience, it is only temporary and is minimal in comparison to the more serious & major pains & issues caused by ES. And as far as the external scar, at 7 weeks I am amazed at how much it is fading & healing. So no worries OK!
Just want to add that I cannot express enough the relief I received because of my surgery. I have been given my life back....and I know you will as well! Sending lots of love your way & prayers!
Nope, facial weakness not completely gone, but improving every week. At first I had 1/2 smile, left eyebrow wouldn't go up at all and left eye wouldn't shut or blink (I had to tape it shut at night). At 7 weeks, my smile is back about 90%, as is my eyebrow. I am still using eyedrops in my left eye to protect eye from become too dry, but not as frequently. Eye stays shut at night and when I blink, it shuts maybe 80%. During surgery my left facial nerve had to be stretched out of the way, so my facial weakness was the outcome. In my case, doctor says I had a "low lying" facial nerve that he had no way of knowing about ahead of time, and the best approach was to move it out of the way to avoid permanent ly damaging it. I understand nerves take a while to repair themselves, sometimes up to 6 months, so I am very pleased with my progress as is my doctor. My Physical Therapist gave me some facial exercises that I believe are helping me. This is a small price to pay for the relief I have received through the styloidectomy surgery. And its only temporary, so its a win-win! Best of luck to you!
Emipie said:
Thank you so much Isiah and Mauifor your support . Maui, facial weakness for 7 weeks, that sounds a long time . Has it completely gone now?
Wow 7 weeks of that sounds pretty significant. Glad you are ultimately happy with the results though. W thadoneopinIm currently applying for jobs after being made redundant. I was hoping that after the the surgery I could get back to applying for jobs pretty quickly…
Were any of you given guidance as to how much you could lift/ how long before you were allowed to lift? I'm working with a gorgeous pair of twins with mobility problems at the moment, so do have to help them up onto chairs/ swings/ car seats etc., so I'm wondering about how long I should leave it before going back to seeing them? I'll ask my surgeon too, but didn't think to ask this when I saw him before- was too shell-shocked by the CT results!!
