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Living With Facial Pain

Neuro in Houston, Texas


#41



Tisha said:

Hi Nina... Dr Kim did my second mvd. The man is awesome. He was the same way with me too. Lol...I had my surgery on April 6th 2011. I was h'm the next day. Yes..the next day. He has amazing credentials if u look him up. Surgery went perfect. Down time they say is about 6 wks but I was back at work n 4. Hope this helped u a little bit.

#42

Hi Tisha & Cheryl,

My surgery got moved to 6.19.2014 instead of 8.13.2014. I spent one night in ICU and another night in a regular room. The first 48hrs was horrible, especially the pounding headache. I felt like I got ran over by a bus. But after physical therapy (they made me walk) I felt a little better. I am home now and this is day 4 after MVD surgery. I was so surprised and disappointed that half of my face (the right side where the TN was affecting) is now totally numbed. I think Dr Dong Kim was surprised as well, but he told me the numbness should subside within 3 months. Did either one of you have this experience? I haven't felt the shocking strike from the TN yet, but I'm not sure if it's because of the numbness that I can't feel anything or is it truly that I'm pain free. If you did experience numbness from your MVD, can you please tell me how long it took for your numbness to go away? Many thanks!
Tisha said:

Hi Nina... Dr Kim did my second mvd. The man is awesome. He was the same way with me too. Lol...I had my surgery on April 6th 2011. I was h'm the next day. Yes..the next day. He has amazing credentials if u look him up. Surgery went perfect. Down time they say is about 6 wks but I was back at work n 4. Hope this helped u a little bit.

#43

Hi Tisha,

Why did you have to have the 2nd MVD surgery? How long ago was your 1st MVD surgery and were you completely pain free after that?

Nina said:



Tisha said:

Hi Nina... Dr Kim did my second mvd. The man is awesome. He was the same way with me too. Lol...I had my surgery on April 6th 2011. I was h'm the next day. Yes..the next day. He has amazing credentials if u look him up. Surgery went perfect. Down time they say is about 6 wks but I was back at work n 4. Hope this helped u a little bit.

#44


Hang in there girl.....I spent 2 nights in ICU then 1 night on a regular floor. I did not have total numbness, but I still have shades of numbness now. BUT, it is nothing after dealing with all the pain. I hurt, not "knife jabs" for several months. I have been off all meds since about 6 weeks after surgery. I had a few issues with my ear after surgery. It started about 3 months after surgery. It just felt like I had fullness, but went away as fast as it had come. The last few months I have had several jabs, but nothing like before. I really do think that if I let myself get extremely tired I get a little pain. I think once you have this condition, you will always have a few "issues", but compared to the before surgery and after surgery, I know I am extremely BLESSED... Please feel free to call or text if you have any more questions.
Nina said:

Hi Tisha,

Why did you have to have the 2nd MVD surgery? How long ago was your 1st MVD surgery and were you completely pain free after that?

Nina said:



Tisha said:

Hi Nina... Dr Kim did my second mvd. The man is awesome. He was the same way with me too. Lol...I had my surgery on April 6th 2011. I was h'm the next day. Yes..the next day. He has amazing credentials if u look him up. Surgery went perfect. Down time they say is about 6 wks but I was back at work n 4. Hope this helped u a little bit.

#45

Good luck, keep us posted.


#46

This is an update from my previous posts. I am now 7 weeks post MVD surgery. I've been off all meds since 2nd week after surgery. No TN pain after surgery. My entire right side of my face (including tongue, scalp and lips) was 100% numb after surgery like a piece of frozen steak. It was very uncomfortable. The only areas that are numb now are cheek, teeth and lips but only about 35%. I feel the nerves moving daily so hopefully the numbness will go away soon.

I am so glad I had this surgery. It saved my life and gave me my joy back. Anyone in Houston looking for a good neurosurgeon please go see Dr Dong Kim in the Medical Center. Good luck to you all.


#47

I am so happy for you !!!! Yes, Dr. Dong Kim is the BEST.....I never had any numbness till a few months after surgery and it came and went in about 2 weeks. Take care and don't do too much..


#48

Cheryl & Trisha,

It has been 16 months after my MVD with Dr. Dong Kim. My facial movement (twisting/pulling) 24/7 has gotten worse with intense pain. Dr. Dong Kim thinks the teflon may have shifted and rubbed another nerve to cause irritation. He wants to redo the surgery. I went for a second opinion and flew to Pittsburgh to see Dr. Sekula. Based on the MRI, Sekula suggests not to redo the surgery. He didn't see any compression and the teflon has not shifted. Dong Kim's office disagree with Sekula so I don't know what to do. My facial pain is 24/7, I can't go on like this, but Sekula told me it would be a big mistake if I redo the surgery.

Any advice?


#49

Sounds like a third opinion (tie breaker) might be in order.

I am confused a bit as to how Sekula could tell by MRI whether or not the "Teflon" had shifted. During the procedure there is continuous BAEP monitoring It really gets going once the dura is opened. The placement of the Teflon is done after the nerve is dissected and the vestibularcochlear nerve is stretched to make room (changes the V wave) in any event the Teflon is placed making sure there is no change in the wave forms when the vestibularcochlear nerve is released . I'm not sure how Sekula would know the original placement. Now understand I could be rusty on the procedure. But its worth asking..............

The other I would ask about is if it could be (or have been) delayed vasopasm in which case Sekula is correct in it being a mistake to redo the surgery.


#50

Hi Modsupport,

Thanks for the response. I'm not sure how Sekula knew the teflon hasn't shifted based on the MRI. He actually showed me on the MRI but you're right how would he know the original placement? My Houston surgeon, Dr. Kim, thinks that either the teflon shifted or that he accidentally placed it where it is rubbing against another nerve to cause my pain and twisting motion of 24/7. This has never happened to any of his patients. And according to other docs they have never heard of the 24/7 painful twisting motion either.

Are you a doctor? You sound like one. What is delayed vasopasm and does it fix itself overtime? My problem is the condition is getting worse by day.


#51

I don't mean to sound like a doc. I'm an old retired guy helping out on Bens friends. Vasospasm is the narrowing of a blood vessel under the dura. In surgery they hold the vessels and nerves out of the way with retractors sometime they are stretched, when released they go back to shape - usually. Think of a stretching a piece of plastic tubing usually it goes right back to shape but when you look at it later some times there is a slight narrowing where it was stretched. That would be a delayed vasospasm. and it can cause problems sometimes surrounding tissue dies making a situation worse, other times it just rubbing and needs more Teflon or repositioning The problem is with a second surgery everything gets stretched again and additional scar tissue is created (which also could be the problem everytime they open the dura.) The good news is an experienced surgeon especially one who has been in you before (and they never forget a brain) can deal with it. You are almost always better off with the original surgeon as has already learned his way around (unless of course the original surgeon was a hack)


#52

Thank you for explaining that. I do feel my nerves are stretched. I can actually feel the stretched nerves moving around inside my face, lips and mouth. That's where the twisting and spinning comes from. I tell all my docs that and they just looked at me with a blank face or said it's all in my head. There's nothing twisting in my face. The brain just sends signal to tell me that's what happening but in reality nothing is twisting...URGH...It does feel like a rubberband...sometimes it stretches and it goes back to being tightened again. This goes on for 24/7.

I believe your theory is correct. My original surgeon is thinking that the teflon is rubbing against a nerve which irritates it and he will go in to reposition and add more if needed. Again, this goes back to what you just said. So, hearing this I feel good about having a second surgery. Do you agree?


#53

I can't imagine the position you are in. Especially the second guessing you are rightfully doing. Based on what you have said, and not knowing all I should I think what I would do is ask Dr. Kim (letting him know you trust him) if he would recommend a consult just to help you resolve your conflicted feelings. IF he agrees, you will know you are on the right track. (unless of course the consult says differently.) o would have more confidence in that than strangers on the internet. He is an excellent doc and should readily agree. If he doesn't readily degree that tells you something too....... Opening up your skull is a really BIG deal. I 'm sure he knows that. Brain surgeons are a cocky lot, you don't want one who isn't LOL. I can tell you are capable of fighting this thing, but when you are in pain and getting worse, the odds of a bad decision go up. a lot of words for "I don't know." But what ever decision you make, it will be the right decision for YOU. and you are the most important piece of the puzzle.


#54

I have decided to let Dr. Dong Kim redo my surgery.It is set for Oct. 15. I can't live in pain level 8 to 12 daily. I went for an EMG today and they said I don't have nerve damage, but I do have a lot of muscle contraction going on, which I already knew.

I've tried all kinds of meds out there and nothing works. I even tried botox and that didn't work either. It left me with a crooked face and smile. The only thing left is redo the surgery even though Dr. Sekula advised me not to do it. Sekula thinks I have nerve damage from the first MVD, but today's EMG confirmed I don't have nerve damage. I was so relieved.


#55

Congratulations! That one pice of information or one consult that gives you the courage an most importantly the conviction to make a decision is so freeing!

Your openness through this whole process has been amazing and will be a help for many others. PLEASE keep us in the loop through the rest.


#56

He is the best ever !!! He did my surgery in Dec. of 2012…I am not saying you won’t have some pain after surgery, but it gave me my life back…I would say my pain is 90% gone…If you would like to talk, let me know. Praying for you…


#57

Praying for you as you get ready for your surgery. Dr. Kim will be more than you ever expected. He is calming, smart and the best !!!


#58

Thank you Cheryl. That is so sweet of you to remember. I am meeting with Dr. Kim today for pre-op appointment. I am still nervous because no docs have heard of my condition with 24/7 painful facial movement and contraction.


#59

Try not to be nervous…I have every confidence in Dr. Kim. Please tell him I said hello…If you have any questions, please call. 979-■■■■■■■■


#60

I may call you this evening after my appointment with Dr. Kim. My appointment is at 5pm. Is that ok with you?