I'm not sure that's accurate. I have both kinds of TN and he didn't speak at all of referring me.
Dr. Lim referred me to Doctor Brown because I had mostly ATN symptoms, he did do a glycerine rhizotomy for me, but that only got rid of the lightning strikes. Dr. Brown is Hopkins "go to " guy for the harder cases. Dr. Lim is a brain surgeon for tumors, the TN is only a small part of what he does.
If anyone wants to get in to Hopkins for a consult, they need to call ASAP. I spoke to Carol James the other day who is Dr. Ben Carsons PA and she told me both her and Dr. Carson are retiring and not taking more cases. Carol told me the wait for a consult can be almost 6 months now.
Wendy
I have my MVD scheduled for March 12th with Dr. Lim - very thrilled to have an actual date and know that I am on my way to living pain free! I have total faith that this is going to work:)
Hi,
I know your post is really old. However, I am scheduled to have a MVD with Dr. Lim on March 21. I was just wondering how everything went for you?
Linda
jyoung said:
Met with Dr. Lim yesterday. He is ordering a high resolution MRI just to get a better look but I have decided to do the MVD surgery and hope to do it in Feb. or March of 2013. Excited and scared equally.
Hi: very good, the MVD was excellent and resolved my main TN issue, but I was over agressive and preauthorized a direct line-of-sight rhizotomy while the surgeon was in there and that was a bit too much as given I had already had a rhizotomy and the gamma knife my nerve was left permanently damaged and introduced something called Anesthesia Dolorosa
So Id say pass on that extra part and stick with the straight up MVD.
Hi Albee,
Thanks for the information. I am scheduled to have a MVD with him on the 21st. I will keep that in mind. I know he had mentioned that if the MRI-F did not show I needed a MVD that he would do a rhizotomy, but he definitey thought I would need the MVD.
Linda
Albee said:
Hi: very good, the MVD was excellent and resolved my main TN issue, but I was over agressive and preauthorized a direct line-of-sight rhizotomy while the surgeon was in there and that was a bit too much as given I had already had a rhizotomy and the gamma knife my nerve was left permanently damaged and introduced something called Anesthesia Dolorosa
So Id say pass on that extra part and stick with the straight up MVD.
Linda.....I just scheduled to have an MVD on April 1st with Dr. Lim. You are on Friday? Good Luck!
Hi Joanna,
I just arrived in Baltimore today. I am scheduled tomorrow for a pre-op MRI-Fiesta and blood work, etc. I will let you know everything. He wanted me to stay in the area for two weeks so we are staying at the Promenade in the Harbor.
I had MVD surgery performed by Dr. Michael Lim at Johns Hopkins in Baltimore one year ago March 12th. I am TOTALLY PAIN FREE and off meds. He is a wonderful doctor and I would recommend him and MVD surgery to anyone!! Good luck to all of you :)
Hi jyoung,
Thanks for this information. That makes me feel better the day before the surgery.
Linda
Joanna,
Today I had my preop visit. The did the MRI- Fiesta which took about an hour. I then had the blood work, EKG, urine sample and chest Xray. I also met briefly with Dr. Lim just to make me feel better. I started at 6:00 am and basically did not stop and fnished up around 10:30. I have about 9 little buttons on my face from the MRI. They want me to leave them. My husband figures they will connect the MRI to them tomorrow during the surgery. I am anxious, but okay. Linda
Joanna said:
Linda.....I just scheduled to have an MVD on April 1st with Dr. Lim. You are on Friday? Good Luck!
JYoung: great to hear you are pain free and off meds!
Linda: Very interesting about the buttons on your face. I understand being anxious...I am a bit already. I had spine surgery at Hopkins in 2011 and everything went great. I do remember, though, that as they were taking me from post-op to my room they wanted to ask me a bunch of questions for my electronic chart - - well, I just had my neck cut open and major surgery...talking was hard!
What time is your operation?
Joanna
Joann, it is at 12:30 pm. I have to be there at 10:30 am. I thoroughly trust Dr. Lim and am sure he will do fine. However I am just anxious. Do you live in the Baltimore area? Linda
Joanna said:
JYoung: great to hear you are pain free and off meds!
Linda: Very interesting about the buttons on your face. I understand being anxious...I am a bit already. I had spine surgery at Hopkins in 2011 and everything went great. I do remember, though, that as they were taking me from post-op to my room they wanted to ask me a bunch of questions for my electronic chart - - well, I just had my neck cut open and major surgery...talking was hard!
What time is your operation?
Joanna
Thinking of you, Linda!
I live in Fairfax, VA...about 1 hour from Hopkins.
Checking in to see how you are doing...
Hi Joanna,
I am not doing well. I am not sure it is the surgery or all my other disorders. How are you doing?
Linda
whats happening Linda?? hit back with your symptoms
Hi,
I really think it is just me, so do not think this is typical of something Dr. Lim did or something that will happen to you or anyone else. I still think he is great. I have so many other disorders and I think they have acted up. I was given steroids and had a reaction to them. The steroids are to help keep the nerves in the brain calmed down. I also was given oxycodone. This may sound strange, but all of this together gave me constipation for 8 days. That was really bad. I have included a funny poem because we all need to laugh. I also have hemifacial neuralgia which is a little like TN, but basically causes the spasms. Dr. Lim tried to repair this as well, but I had too much scar tissue and bleeding so he did not continue. I flew home after 14 days and the flight was really difficult for me.
I still have the TN pain, just not quite as intense. I am weak from the surgery and I hurt and there is not a lot I can take. Dr. Lim's office put me back on a steroid pack starting yesterday to see if this will help. My local neurologist increased my Topomax again. My family doctor is giving me more Vitamin D and B12 Everyone is hopeful I will get better. It is very difficult to remain optimistic. I am forcing myself to get out and walk at least 20 minutes twice a day. However, because I have lumbar radiculopathy and plantar's faciitis that can be challenging as well. Here's the poem about constipation. Have a laugh. Hopefully no one finds it too offensive. Linda
Who's the Boss?
The organs of a body were fighting over who should be boss.
The brain said, "I should be boss, since I control what the person thinks."
The hands said, "I should be boss because I do almost everything for the person."
The legs declared, "I should be boss since I carry the body and all the weight is on me."
So they went on, each stating their qualities and uses.
Then the Asshole spoke up, "I think I should be boss, because.."
He had not finished when everyone else started laughing at him.
You, an asshole, be the boss? You gotta be kidding!"
The asshole was very unhappy, and he closed himself up.
The body soon suffered a terrible constipation, and the organs could not take it anymore.
"Ok, ok, you're the boss!" they gave in.
So the asshole became the boss of the body.
The moral of the story: You don't need brains to be a boss, you just need to be an asshole.
Laughs
LInda, It is day by day. At first I was back in Hopkins with a possible infection...negative. Now I have good days and bad days. I think that I completely underestimated the amount of trauma the cerebellum goes through by being moved. If I do too much, I end up nauseous and feverish. I have intermitent TN shooting pains, but I am hoping it is due to my newly freed up nerve root calming down.
BTW: they did not find any arteries or veins compressing - they found thick adhesions impinging the nerve and pressing it against other nerves in the zone. Apparently, I had meningitis at some point in my life that caused inflammation and hence the adhesions.
Joanna
Hi Joanna,
I agree that we do not realize what happens to the cerebellum when someone messes with it. I was the same as far as the MRI. It showed an artery lying across the trigeminal nerve. I think the flight also caused me a lot of problems. Even before surgery for a couple of years when I would fly I would have problems for a few days. I am now on a 5 day steroid that they are hoping will calm everything down.
Thanks for sharing your situation. You look much younger than me. I hate having to admit this, but I do think that as we get older our bodies just do not snap back as easily. One of the reasons I went ahead with the surgery at this point is because I did not want to be doing it in ten years when I am 72. Believe it or not, I think this has been more difficult or at least as difficult as when I was going through chemotherapy and radiation. Ten years makes a difference. Please keep in touch re: your progress. Would you still go to Dr. Lim and do you still think he did a good job?
Linda
linreed said:
Hi,
I really think it is just me, so do not think this is typical of something Dr. Lim did or something that will happen to you or anyone else. I still think he is great. I have so many other disorders and I think they have acted up. I was given steroids and had a reaction to them. The steroids are to help keep the nerves in the brain calmed down. I also was given oxycodone. This may sound strange, but all of this together gave me constipation for 8 days. That was really bad. I have included a funny poem because we all need to laugh. I also have hemifacial neuralgia which is a little like TN, but basically causes the spasms. Dr. Lim tried to repair this as well, but I had too much scar tissue and bleeding so he did not continue. I flew home after 14 days and the flight was really difficult for me.
I still have the TN pain, just not quite as intense. I am weak from the surgery and I hurt and there is not a lot I can take. Dr. Lim's office put me back on a steroid pack starting yesterday to see if this will help. My local neurologist increased my Topomax again. My family doctor is giving me more Vitamin D and B12 Everyone is hopeful I will get better. It is very difficult to remain optimistic. I am forcing myself to get out and walk at least 20 minutes twice a day. However, because I have lumbar radiculopathy and plantar's faciitis that can be challenging as well. Here's the poem about constipation. Have a laugh. Hopefully no one finds it too offensive. Linda
Who's the Boss?
The organs of a body were fighting over who should be boss.
The brain said, "I should be boss, since I control what the person thinks."
The hands said, "I should be boss because I do almost everything for the person."
The legs declared, "I should be boss since I carry the body and all the weight is on me."
So they went on, each stating their qualities and uses.
Then the Asshole spoke up, "I think I should be boss, because.."
He had not finished when everyone else started laughing at him.
You, an asshole, be the boss? You gotta be kidding!"
The asshole was very unhappy, and he closed himself up.
The body soon suffered a terrible constipation, and the organs could not take it anymore.
"Ok, ok, you're the boss!" they gave in.
So the asshole became the boss of the body.
The moral of the story: You don't need brains to be a boss, you just need to be an asshole.
Laughs