I have had TN for 1 year now and have been on tegretol, lyrica and Neurontin. However I went to my neurosurgeon apt today and decided to have MVD surgery at the end of the month. However, I feel like I am rushing to have surgery, scared and nervous. Is this normal to feel like this?
I tried those three meds within 12 months.
In the 12th month of my TN onset, I had MVD!
After I laid in bed for three weeks, and started my life again.
Research shows now, within he first 3 years is optimal.
The VERY MOST question is… Has your neuro surgeon done hundreds of successful MVDs…meaning…complication-wise.???
I was terrrrrrified! I came here every day and asked a million questions, and shared my fears.
Between these great people, and
knowing my TN surgeon had litterally done thousands of MVDs since the 1970s…
Those two things helped a lot. My big fear was anesthesia …
Just my own fear…not so much my operation!
I am 2 weeks short, of my 2 years since MVD. I have no TN pain at present.
You can email me at ■■■■■■■■■■■■■■■■■■■■
For my MVD JOURNEY.
KIMBERLY : )
My neuro has done plenty of the surgeries regarding TN so I am not concerned with that and he did not pressure me at all. I guess the issue is that my mom does not want me to have surgery at all. She understands that I have face pain from my accident but I know she is concerned but it I hard to live on these meds, sleep all day and not function very well. She is just making me feel like I shouldn't do the MVD and just wants me to live with the pain and take the meds but I don't want to take the meds considering I was never on any type of meds before the accident.
Tell your mom, that eventually, over time, the meds will stop working for pain.
Or you will have to take several meds at the same time, and have even less function. or that your body will eventually reject them. You just can not live forever on these high doses of the meds.
TN only gets worse over time. It is a progression disease with no cure....MVD is not a cure, but can buy some years of descent life. You can get an MVD, and maybe still be on meds, but low dose ones. So that you can still function.
Its not her body, and I'm sure that she is fearful of the MVD.
Dr. Casey put it to me this way: This is not brain surgery. It is cranial surgery. On a scale of 1- 10:
Brain surgery is a 10.
could be where there is an unremovable tumor. A brain bleed. A permanent brain injury in surgery, etc. Death.
MVD is a 1. The two things you have to consider after MVD is that you might have temporary or small amount of loss of hearing in that ear. Ask your surgeon. The other is that you have to watch for CSF leak. I don't know the percentage, but it is totally fixable. If your nose or incision is leaking clear fluid you go to ER and get it fixed.
If your mom cannot support this, you need to grab somebody that will!!! Once you get to North Dakota, your neurosurgeons are far and between.
Why would anybody want your daughter to live with pain and take meds?
Does this help any?
I think she is scared for me considering I am only 33 years old. I understand her point but she is just being a parent.
I talked to her today about it and she was much more understanding about it today, she justs wants to make sure that I have a go dr with no claims and was wondering what the side effects were and the chances of not having anymore pain.
I have only been on meds for a couple of months now without any relief. My doc just doubled the dose on the Gab/nur. I told him I was only willing to try the med route for only so long. He agreed and gave me a referial for a nuero-surgen. I go see him in 10 days. I'm going to tell him the same thing I told the other doctor. I hate the meds, I hate how they make me feel, I'd rather just have the MVD. Explain that to your mom, maybe she'll understand, maybe not.
I think most people fail to really understand just what it is we live with. Today I sneezed and I thought my head was going to explode. It hurt so bad I had to fight to keep control of my car as tears fell from my eyes. For the rest of this day that pain has been coming like waves. In and out, in and out. I just want to go home and take a couple or a few hydrocodones and put the pillow over my head.
Anyway, hang in there. Don't be mad at your mom, she's just worried. She doesn't want to you to live with the pain, she just doesn't want to have to live without you. Help her understand what's really involved with the MVD
Thanks for the advice everyone! My mom will understand it will just take time because she is not one that welcomes change but she will adjust. She is just upset that all the TN came because of my eye getting burned at a salon and now resulting in surgery.
So I will be having surgery at the end of October and I am nervous and scared but will be glad when I can stop taking meds and will not feel like I live in a foggy haze and feel drunk.
Jennifer...I was the same age as you 33 when I had my MVD surgery 30 years ago. It completely turned my life around as I have been pain free for 30 years. Being young and only having TN for a year makes your prognosis and recovery even better. Its very natural for you to be nervous and as a parent I also would certainly be scared to see my child go through this type of surgery. Continue to educate your mom on TN but only a TN patient can really understand the pain that you are going through. Good luck with your surgery..Ed
Chance of never having pain ever again? I think you better get the answer from the surgeon. It’s not a forever cure in most cases.
In 3 years here, reading most every day, I’ve only heard of Ed making it 30 years.
But ask doc.!
I know I may never be pain free again, I am just trying to be optimistic
Jennifer, totally be optimistic!!
I think KC and I always try to ensure ( here at LwTN) that people understand MVD is not a cure for many people, to avoid disappointment and to make sure everyone understands what MVD really is…
In my opinion based on much research, MVD is an opportunity to lessen the pain and possibly provide a pain free status for many many years, like Ed.
MVD has the highest rate of success out of all the procedures offered and it’s the only procedure that if done by a highly qualified NS, will not damage your nerve.
Many studies show that if MVD us performed within the first 3 years of onset, chances are higher for an outcome like Ed’s…
Feeling nervous, anxious and riddled with fear is perfectly normal, BUT, you shouldn’t feel like you are rushing into something…if you still feel that way, I would suggest you take some time to really read and learn all you can about MVD as well as the other options available, so that you can find peace with your decision. In the MVD group I have a thread with many links to research studies that are fairly easy to read and understand if you’re interested, have a look.
The MVD group is a great source of info and personal experiences, I read the entire group threads prior to my MVD…
Your mom is just very concerned I imagine as the surgery is a big deal, and you’re her baby!
All the best of wishes Jennifer, keep us updated, if yu have any questions feel free to message me!
(( hugs )) Mimi xx
risks are all around us in everyday life. for me living on the meds, and still having the pain was not living. my body seemed very unhappy about the mvd surgery, but that part is behind me and im back at it (life that is). i highly recommend the mvd.
I agree with KC dancer ( with the caveat that I, DO feel cured) and urge you to look at MVD. When successful, and and it usually is, it FIXES the issue. Meds mask the issue . I am 16 months post MVD, have no issues and no meds. Do your research and good luck.
I am also in Houston and had MVD done 14 months ago. I had complications from the surgery. I am currently being treated for mastoiditis. I had all the indications of it 2 months after the surgery but my surgeon told me that I had not given myself time to heal. I am on IV antibiotics now in my 5th week with at least a couple more to go. Had I not gone to my PCP about the pain that everyone was convinced was entrapped nerves in the incision Lord only knows how long it would have taken them to find the bacteria that I have had in my skull for over a year. I have also had a headache since the day I woke up from the surgery. I got my first set of Botox injections for the headaches this past Friday -- 2 weeks to start to see results and 6 weeks to know if it is the answer. May I ask who your surgeon in Houston Is? I wish you the best of luck. Mine was not so good after the fact with complications and the TN is starting to raise it's nasty head again.
houston man said:
I have only been on meds for a couple of months now without any relief. My doc just doubled the dose on the Gab/nur. I told him I was only willing to try the med route for only so long. He agreed and gave me a referial for a nuero-surgen. I go see him in 10 days. I'm going to tell him the same thing I told the other doctor. I hate the meds, I hate how they make me feel, I'd rather just have the MVD. Explain that to your mom, maybe she'll understand, maybe not.
I think most people fail to really understand just what it is we live with. Today I sneezed and I thought my head was going to explode. It hurt so bad I had to fight to keep control of my car as tears fell from my eyes. For the rest of this day that pain has been coming like waves. In and out, in and out. I just want to go home and take a couple or a few hydrocodones and put the pillow over my head.
Anyway, hang in there. Don't be mad at your mom, she's just worried. She doesn't want to you to live with the pain, she just doesn't want to have to live without you. Help her understand what's really involved with the MVD
I am sure that I am going to have MVD and am planning on having it at the end of this month. After the day I had today with pain, I have had my last straw. My mom is now understanding and nor do I feel like I am rushing. I am tired of being on meds to where all I do is sleep ALL day and want some help getting relief.
Sometimes the hardest thing to do, is make the decision… Then you can take a breath!
The technician let hot wax drip into my left eye and then the next day my face started having really bad pains and the dr dx as TN
My surgeon is some messed up name, it starts with a vibvkanathan, or something like that, anyway, he's out of baylor. I see him next Monday. Who was your's?
Mary N. said:
I am also in Houston and had MVD done 14 months ago. I had complications from the surgery. I am currently being treated for mastoiditis. I had all the indications of it 2 months after the surgery but my surgeon told me that I had not given myself time to heal. I am on IV antibiotics now in my 5th week with at least a couple more to go. Had I not gone to my PCP about the pain that everyone was convinced was entrapped nerves in the incision Lord only knows how long it would have taken them to find the bacteria that I have had in my skull for over a year. I have also had a headache since the day I woke up from the surgery. I got my first set of Botox injections for the headaches this past Friday -- 2 weeks to start to see results and 6 weeks to know if it is the answer. May I ask who your surgeon in Houston Is? I wish you the best of luck. Mine was not so good after the fact with complications and the TN is starting to raise it's nasty head again.
houston man said:I have only been on meds for a couple of months now without any relief. My doc just doubled the dose on the Gab/nur. I told him I was only willing to try the med route for only so long. He agreed and gave me a referial for a nuero-surgen. I go see him in 10 days. I'm going to tell him the same thing I told the other doctor. I hate the meds, I hate how they make me feel, I'd rather just have the MVD. Explain that to your mom, maybe she'll understand, maybe not.
I think most people fail to really understand just what it is we live with. Today I sneezed and I thought my head was going to explode. It hurt so bad I had to fight to keep control of my car as tears fell from my eyes. For the rest of this day that pain has been coming like waves. In and out, in and out. I just want to go home and take a couple or a few hydrocodones and put the pillow over my head.
Anyway, hang in there. Don't be mad at your mom, she's just worried. She doesn't want to you to live with the pain, she just doesn't want to have to live without you. Help her understand what's really involved with the MVD
My drs name is Chitale. He is great
My neuro is Dr. Garcia, and he's wonderful. He takes his time, he listens to whatever I have to say and answers any questions I have. I really like him. I believe it's very important to have a doc you can talk too and trust.