I appologize if you read this somewhere else. I am reaching out to a couple of groups.
I had my MRI and neurosurgeon appoinments on Fri 10/10/14, The NS confirmed that I have compression on both my 5th & 7th cranial nerves. The MVD surgery is scheduled in 2 weeks with a highly regarded NS, Dr Patel, at MUSC in Charleston, SC.
My dad is strongly advising me to get a second opinion.
My question is, If I can indeed find another NS within the next two weeks to look at my MRIs, and they do not do the MVD surgery, will they be able to diagnose me? If not, I don’t want to waste my or the doctor’s time. I’m exhausted from trying to get in with doctors and being bounced around. If there is no need to go to another NS, then I certainly don’t want to.
Dr. Patel is the only one in my area that does this surgery. I trust him and the utmost confidence in him and I am ready to get this party started. Although, I understand the importance of a second opinion.
What do you think? Will another NS be able to diagnose me if they do not do the microvascular decompression surgery?
I would have to say it depends on how long you have been sick, what medications you have tried, etc. I’ve had two MVDs now, and they are no fun. I’m glad I had them, but if you are unsure if your diagnosis or have not tried medications, you may want to wait and get the second opinion. On the same note, if you’ve been suffering long and don’t want to wait, then do the surgery. Either way, you will find great support here. Best wishes and keep me posted please (I’m just three months out from my second mvd). Lee
My parents at first did not want me to even think about the MVD surgery. Once I decided to go ahead with the surgery, I brought them with me to the neurosurgeon's office and he showed them on my MRI scan where the compression was. At that point they were both behind me as they could see the compression.
If your MRI show's a compression, you've go it. A different Dr viewing the same MRI would most likely tell you that you have Trigeminal Neuralgia. Any Dr can diagnose, the important issue is what Dr is doing the surgery. If you have checked out Dr Patel and he has done a lot of MVD's then he's the one you want. I asked my Dr how many he has done and he said hundreds.
I had my MVD 2 years ago and have been pain free since!
I want the surgery yesterday. I absolutely do not know how I’m going to make it another 2 weeks. I’m in excruciating pain that is disabling. I do trust Dr Patel. My main question is whether a NS that doesn’t know as much about MVD would be a good source to go for a second opinion, since that is the only option where I live. If so, I will do my best to appease my dad and get another opinion. I have a biology & chemistry degree and have been doing a lot of research on GN and the anatomy of the brain. I could see the compression on both nerves. My dad couldn’t make it to see the MRI or meet the doctor, so he doesn’t have the same confidence as I do. I’m almost 38, but I guess a dad is going to be protective of his only daughter.
Lee said:
I would have to say it depends on how long you have been sick, what medications you have tried, etc. I’ve had two MVDs now, and they are no fun. I’m glad I had them, but if you are unsure if your diagnosis or have not tried medications, you may want to wait and get the second opinion. On the same note, if you’ve been suffering long and don’t want to wait, then do the surgery. Either way, you will find great support here. Best wishes and keep me posted please (I’m just three months out from my second mvd). Lee
Then get the mvd done. If it’s on the scan and you are suffering, get it done ASAP - I don’t regret either of mine. Best wishes to you and keep me posted! Lee
I’m so sorry - and so many side effects from the meds. Sending you my best wishes and thoughts! When I awoke from my first mvd I cried because the pain was gone
Lee
Mary,
My dad had planned to come to the appointment, but had to miss it because my step-mom had surgery the same day as my MRI and NS appt (same day). He would feel more confident if he would have been there. I just wanted opinions. I’m confident in my doctor and believe I am in great hands. I can’t wait to get this started and over. Thanks for responding.
Danielle
mary said:
Hi Danielle,
My parents at first did not want me to even think about the MVD surgery. Once I decided to go ahead with the surgery, I brought them with me to the neurosurgeon's office and he showed them on my MRI scan where the compression was. At that point they were both behind me as they could see the compression.
If your MRI show's a compression, you've go it. A different Dr viewing the same MRI would most likely tell you that you have Trigeminal Neuralgia. Any Dr can diagnose, the important issue is what Dr is doing the surgery. If you have checked out Dr Patel and he has done a lot of MVD's then he's the one you want. I asked my Dr how many he has done and he said hundreds.
I had my MVD 2 years ago and have been pain free since!
Hi, as long as your Surgeon does MVDs in a regular basis. As in weekly ! And has been doing them for a long time. it does make us all feel better to have a medical opinion validated by another Doctor. But if your current Surgeon is an expert, then you shouldn’t need to stress about another opinion. I shopped for a surgeon based on their reputation, and when I found one, flew from FL to MI, had the consult on Tuesday, basically to see if I was a good candidate, Then the MVD on Wed. I would go back to him in a heartbeat.
Your family is just terrified, and understandably so. this is a hard thing to face.
Sounds like you are in good hands!
Keep us posted!
— tiffanie
Mary,
He has been doing MVD for 2 decades, but said only 3 out of 100 have GN (me) and the rest are TN. So he does 3 surgeries a year on the 5 & 7 nerve. I guess.
Out of curiosity, what are the chances of having 2 MVD surgeries, Lee? That sounds horrible!
Danielle
freeSpiritDanielle said:
I want the surgery yesterday. I absolutely do not know how I’m going to make it another 2 weeks. I’m in excruciating pain that is disabling. I do trust Dr Patel. My main question is whether a NS that doesn’t know as much about MVD would be a good source to go for a second opinion, since that is the only option where I live. If so, I will do my best to appease my dad and get another opinion. I have a biology & chemistry degree and have been doing a lot of research on GN and the anatomy of the brain. I could see the compression on both nerves. My dad couldn’t make it to see the MRI or meet the doctor, so he doesn’t have the same confidence as I do. I’m almost 38, but I guess a dad is going to be protective of his only daughter.
Lee said:
I would have to say it depends on how long you have been sick, what medications you have tried, etc. I’ve had two MVDs now, and they are no fun. I’m glad I had them, but if you are unsure if your diagnosis or have not tried medications, you may want to wait and get the second opinion. On the same note, if you’ve been suffering long and don’t want to wait, then do the surgery. Either way, you will find great support here. Best wishes and keep me posted please (I’m just three months out from my second mvd). Lee
I have bilateral tn - first side was fixed two years ago, then the disease attacked the other side of my face and that surgery was in June. I had the same surgeon both times. It is hell sometimes - tn has taken so much of my life. Some days it’s too much to bear but so far I’m still fighting. Do you have tn Danielle? How long have you been sick? My parents thought the first time I just had headaches from stress LOL!!! I wish! Lee
Maybe you could squeeze an appointment with just your neurologist or PCP or radiologist and bring you dad. They could maybe show him your scan? Might put his nerves to rest.
He can always email my parents! :)
freeSpiritDanielle said:
Mary, He has been doing MVD for 2 decades, but said only 3 out of 100 have GN (me) and the rest are TN. So he does 3 surgeries a year on the 5 & 7 nerve. I guess.
I think I’m going to let my dad know he is free to call my NS and set up a time to meet with him. I have so much to worry about…I definitely underdstand my dad wanting a second opinion, but he doesn’t know how much of a feat that really is, in two weeks. I’m already overwhelmed. Thanks everyone. I had to come to some conclusion.
You are doing great Danielle - one thing that helped me with feeling (and still to this day) overwhelmed is to write things down in a notebook. I keep just a plain notebook with daily appointments, meds, phone numbers, etc etc. also finding this group has made a huge difference for me emotionally. I felt so alone until I came here. Feel free to friend me if you want to email- no one should go through this alone. Lee
