Went for my check up today which was postponed two weeks because my surgeon was out of the office. For those of you who don’t know, I had MVD May 7th. The surgeon showed my husband and I the compression that “he saw” on the MRI. This is a reputable surgeon at the Cleveland Clinic. We trusted him and I went through the surgery. He saw no compression when he went in so he pinched my nerve. I had a heck of a recovery and still have pain in my jaw and sensitivity in my teeth. We were hoping for some answers today. After an hour and a half in the room the nurse finally comes in and asks the series of questions that we have heard a million times…"What number is your pain, are you afraid to be in your home?, etc…) I am so sick of answering these same questions and getting seemingly nowhere! Finally the doctor comes in and my husband and I ask if this pain is to be expected, if it normally subsides or gets worse, etc. His answer to about every question was “Everyone is different. There is no way to know”. He said something about as the nerve heals the pain may come back - it may be a year or it may be a month, who knows? He told me to go back on the tegretol. I had a horrible experience with tegretol so I told him I would not do that unless the pain became intolerable. He then said to take neurontin. (I also tried that when they were weaning me off tegretol and became so weak and depressed I could barely get off the floor in my house.) I asked in the worse case scenario if the pain came back full force what the next step would be. He said. “I will not answer that question”. What?! The bill for this damn surgery was $43,000 and he won’t answer my question!!! I was dumbfounded. He said he will only look in a “positive direction”. Am I crazy or is this INSANITY?
Surgeons by nature have large egos and the worse for the egos seem to be the neurosurgeons. You are not quite 2 months post-op. It has not been a long time since you have had the surgery. My neurosurgeon told me it could take up to year to heal from the MVD. I did not start getting good pain relief until I was close to 6 months post-op.
Your neurosurgeon is right. Everyone is different. I had a great year before my TN relapsed again for the 2nd time this past March. Am waiting to have a referal approved to see a neurosurgeon at Oregon Health and Science University (OHSU). The neurosurgeon who refered me made it clear it is up to the new surgeon what will be done. It could have been your neurosurgeon was not wanting to say anything until such time the “worst case scenario” happened or he was letting his ego get into the way. Not being there it is hard for me to say. If no longer comfortable with this surgeon I would start looking for a new one before you have to see them.
Sorry you have had such a bad experence.
Hang in there,
Hugs,
Sarah
Thanks Sarah and Sabrina,
Sabrina you asked about him pinching the nerve. He literally pinched it in order to numb the area. That’s probably why the pain isn’t as severe, and I am grateful for that. As the nerve heals the pain may or may not come back - a month, a year later…no one knows. I hope and pray the severe pain never comes back. That doesn’t seem to be what happens with this condition though, but one can always hope. I am afraid to take any medication because of how it robbed me of my personality. I will if the pain gets too bad though. My teeth are the most painful thing now. It feels like my bite is off and they are tender and sensitive on that side. If he hadn’t pinched the nerve I guess that feeling might be intolerable pain and then I may be having to take medication. I was just so frustrated yesterday…one of those days. My jaw also aches when I try to do too much.
How are you both doing today?
Jamie
How are both of you doing?
Jamie
Sabrina Ellis said:
Hi Jamie, Sorry you are still in pain and the neurosurgeon is giving you the run around.I don’t know much about mvd surgery but what does he mean when he said he pinched your nerve?All the people I have read about do seem to have different experiences as to how much time it takes the pain to go away so please don’t give up.I know Liz had mvd last year and she is still on alot of medications.Many people that have had mvd are still on some pain medication.It still has not been long since you had your surgery and I understand your frustration with the neurosurgeon.You are in my thoughts and prayers and I hope your pain goes away soon.
jamie, sorry to hear about your dissappointing response to sx and the surgeon’s follow up appointment. i do not understand what the sx meant about pinching your nerve. it sounds to me like the surgeon only wants to hear about sx that goes well and if you do not have a favourable response tells you he will only look in a positive direction. where does that leave you? I see he suggested tegertol or neurontin- i guess they are the meds of choice but they are really difficult for some of us to take. i also had a really awful time on them- so groogy, forgetful and gi trouble. when i weaned off the drugs my neurologist cautioned me that the drugs can cause seizures if weaned too quickly… i was not aware of this and i am reluctant to go back on them. i understand how frustrated you must feel. hang in and i will be praying for you and all tn suffers
Thank you for your prayers Maureen. How are you feeling?
Hi Jamie, it is really tough navigating through this medical maze and even tougher when one is dealing with TN pain. I was hoping your appointment would go well…you are a tough chick ! think positive…that is what you must do…be positive…I know it is hard but you know you can do it…
jamie, not feeling too bad. was really sore when i woke this am and thought to myself darn it i have to just push throught this pain. i am holidays from work this wk and. did not want to spend it stuck in bad face pain. went for a long walk with hubby, bought products to build a new fence and had lunch with 2 of my 4 adult sons. hubby and i painted the fence boards, ate home made pasts and then drove around in our little convertiable stopping for beer and wings. what a great day.
jamie, i know there are many sunny days for you ahead. i stand with you , beside you and remain hopeful with you, that there are better hours and days ahead. peace and remain the strong woman that your are
jamie leigh said:
Thank you for your prayers Maureen. How are you feeling?
It seems that every experience I have read where the surgeon “pinched” the nerve, it didn’t produce positive results. I asked the surgeon before my MVD (June16th) if he was going to do that if he didn’t see an offending vessel causing compression. He said that he doesn’t do that, it isn’t typically helpful. Fortunately, he found an artery and scarred arachnoid tissue compressing the nerve, so he had something to fix. This doc has more experience dealing with TN than any other neuro I’ve been to, yet I’ve never sensed any egomania from him. I got lucky. I think you have a right to be angry, these guys work for us!
Thank you all for your support:) It means a lot to me to know there you all understand. I have family and friends who are understanding and loving but they just can’t understand completely the way you guys can.
That’s pretty interesting what your surgeon told you about pinching the nerve Maureen. My surgeon is intimidating because he doesn’t seem to want me to ask any questions. I am just to trust him and in his mind it’s as simple as that…I won’t write what I’m thinking about that right now because it is very nice…Maureen are you feeling on top of the world knowing your TN pain is gone? I’m so happy for you.
Sabrina, good luck with your healing. I hope this is your answer. I was supposed to go to my dentist for a cleaning. I called and told them what was going on and I didn’t think I could go through a cleaning (I don’t even think I can open my mouth that far). I explained how I still feel like my teeth are not aligned. The same dentist had checked my teeth back in December and my teeth looked fine. But, I am going in again to see what they say. I feel like my bottom jaw is over to the left of my top and my teeth hit. The neurologist told me that feeling was just from the TN and not dental…who knows? I just hope and pray we can all be free of this someday soon.
Happy 4th of July to all of you. I hope we all are spared pain and can have a beautiful day.
Thanks again to all of you. I’m so glad we are here for each other.
Jamie
Hi Vic,
Thank you for reminding me to remain positive and for all your support. Good luck with your upcoming surgery!!
Jamie
Vic Maidhof said:
Hi Jamie, it is really tough navigating through this medical maze and even tougher when one is dealing with TN pain. I was hoping your appointment would go well…you are a tough chick ! think positive…that is what you must do…be positive…I know it is hard but you know you can do it…