I just saw my neurosurgeon for the first time. I had an mri done a few days ago with contrast and so was able to bring that with me to the meeting. The Dr was very nice, understanding. Supportive, knowledgeable. I am very fortunate. He said I am a candidate for MD but a couple of other options are also available to me. He wants me to think about it for now. Our next meeting is scheduled for January 14th. He told me that MD is 80% success rate. I’m not sure what all if the negatives are. He talked about pain on the cheek, numbness at the opening and 20% failure rate. By failure I’m not sure what he meant. It just doesn’t work or something bad happens? I never thought to ask him at the appointment. He also said a 2 month recovery away from work would be expected to be on the safe side. Can anyone tell me how they felt in the days and weeks following surgery? I’m unsure at the moment but have til January 14 to think about it. Strangely I have been relatively pain free now for three days. Of course I’m still on the drugs and am confident the pain would return quickly without them.
Sorry, I guess it’s MVD not MD
Pierre..I would certainly read up on the possible outcomes and side effects of MVD. I had mine done 30 years ago after suffering with TN for 8 years and have been totally pain free since. For my money its the only way to go as it is the one true option that can actually fix your problem and fix it permanently. Some other procedures, if done before MVD, would lower the odds of MVD being successful if they are done first. My recovery was very easy. Had only one issue and that was a spinal fluid leak at site of the surgery. Not painful but had to go back in hospital for 4-5 days to have tap inserted to relieve spinal fluid pressure. I also had severe headaches the first 3 days after surgery but that was due to them having me sit up right after having a spinal tap done. Some people have to lay flat on back for 24 hrs after a spinal tap and I was one of them. Both side effects were not difficult to deal with and in comparison to TN pain were nothing. Slept in my bed the first night home and within a few days was taking walks in my development. By week 3 I was ready to go back to work. The only side affect since surgery is some periodic numbness on the left side of my face. I take this as just a reminder of what I went through . Everyone surgery and recovery is different but if I had to do it again I absolutely would. Good luck and if any oter questions let me know..Ed
Thanks a lot for your response Ed. It sounds like you had a fairly good experience and a positive, long lasting outcome. Was the spinal tap not a painful experience?
Spinal tap was done to check for MS...not painful at all just an uncomfortable pressure feeling. They got me up too soon after the tap which caused the headaches for 3 days. They did what they called a spinal plus by injecting my own blood into my spine and within minutes I could sit up and was fine.Just one of those things that can happen. Wasnt a big deal after years of TN pain we can handle most anything. Good luck...Ed
I had mvd surgery done in July of this year after having my TN confirmed by contrast mri/mra. I believe the chances for success with the surgery are much greater if there is confirmation of vascular pressure on the nerve. This was the case. My surgery was done at Cedar Sinai in LA by Dr Michael Alexander. I had only one day of mild discomfort from the surgery around the surgical site behind my ear, and it took about a week to get my equilibrium back to normal. I have been pain free since the surgery and would highly recommend this procedure over any other form of treatment. As Ed said this is the only true fix for the condition. I took it easy physically for about 6 weeks but was able to return back to work after 2 weeks as a real estate agent. I would be glad to chat more about the specifics of the whole process if you would like more detailed information. Good luck with your decision, and trust your heart!
Jay from North Idaho
Thanks for the info Jay. I would like to speak to you more about this if there’s a way we can chat. My big concern right now is that there doesn’t seem to be a 100% confirmation of TN from the contrast MRI. That being said Dr Pokrupa seems confident that that is the case from what he saw in the MRI. Frankly I’d hate to have brain surgery for nothing. Also I have to take into account that he has a lot of experience with TN and MVD surgery. He did seem a bit surprised that there weren’t more obvious signs of TN given the fact that I’ve had these pains for over ten years. He said I was a great candidate for the surgery so he must be confident of the diagnosis. Right?
Pierre..it is very common for the MRI not to show any compression. In fact I think it is more common for it not to show on MRI then it is to show. Experienced neurosurgeons can diagnosis primarily from the symptoms especially if they are typical. Back in the day, 30 years ago, I didnt even have an MRI done. My neurosurgeon told me "I know what you have and I can help you". When he went in not only did I have 2 veins compressing on the nerve I also had a artery pulsating on the same nerve. Good luck and as Jay says go with what your heart says just make sure you are 100% confident in your surgeon.
Yes Ed, I am confident in the surgeon I’m just jittery right now. I guess I just expected to see something definite in the MRI. I’m pretty sure I’m going to have the surgery. I guess I just want to talk to and hear from people who have had first hand experience like your good self and Jay. My wife is very pro MVd. We have both read quite a bit about it. We can’t seem to find an answer to what happens to the 20% failure rate either.
If your surgeon is experienced with a good track history of doing a lot of these with a good success rate and he says that he thinks your a good candidate I would have a fair amount of confidence in that. My surgeon came with very high credentials (Duke University head of neurology department, taught at UCLA med school and on and on) but he had only done 250 mvd surgeries which I am not sure how that falls in contrast to other neurosurgeons numbers. He had done over 2500 intra-cranial vascular surgeries involving the mid brain areas in close proximity to the area of the TN and the associated vascular components that can compromise the nerve, so I felt like he did have a lot of experience in that regard. He told me that he felt like I had a 95% chance of having marked relief and about a 90% chance of having it completely go away given the findings on the mri/mra that he observed. Those are odds I felt very confident with. One thing that he used which from my research I saw only a handful of neuro-surgeons that were using this, was a minimally invasive endo scope to reach the site of the compression. I believe it is 2.5 mm in diameter and it's my understanding that most other surgeons are still using the large endo scope to visualize the site and get to it. It only made sense to me that less chance for damage could occur with using a smaller instrument. I really do feel like especially with this surgery that it is important to thoroughly investigate and ask the hard questions of your surgeon and others who have had the surgery because you realistically only get one chance at it being successful. I do read of a lot of failed mvds but of course your going to read more of those on a blog site. For me, it was a piece of cake, and I would much rather have had this procedure than to have to go thru say a hip replacement or knee replacement with all of the rehab involved. Again, if you don't want to live out your life on meds and the eventual side effects of them this is your one chance to get to the root of the problem. I was a chiropractor for over 30 years and believe me I tried everything non surgical that is out there with minimal to no relief. By the way the week I went in for the surgery my symptoms went into remission. I asked Dr Alexander if I should continue with the surgery and his response was " wouldn't it be great to not have pain going into the surgery and never have it again"
Keep in touch and let me know if I can be of any help in answering any concerns, questions, or just be a sounding board. I feel like this is where God is able to use me to give hope to so many who have maybe lost hope. My thoughts and prayers go out to you Pierre!!!
Jay
Pierre, sorry I’m late to reply to this blog post, never saw it until today…
I just wanted to share that in my experience, compressions NEVER showed up on any MRIs and I’ve had TN since 2002.
During MVD surgery my Neurosurgeon found 3 compressions!
My surgery was successful in that before MVD my pain was 24/7 resistant to ALL meds. My TN pain is still present and 9 months after surgery is increasing/ worsening… BUT it is definitely better than pre-surgery.
Here’s the thing that you must understand, there is no known cause other than whats listed below, AND some are suspected causes…therefore no cure.
MVD has the best results of ALL procedures currently available to minimize or eliminate the pain. And it’s the only procedure offered to us that does NOT damage the nerve.
Compression does not cause TN. There are many people with compressions on their trigeminal nerve that DO NOT have TN, and many people with TN that DO NOT have compressions on their nerve.
Below is a list of known and suspected causes:
A blood vessel presses against the root of the trigeminal nerve.
Multiple sclerosis - due to demyelinization of the nerve. Trigeminal neuralgia typically appears in the advanced stages of multiple sclerosis.
A tumor presses against the trigeminal nerve. This is a rare cause.
Physical damage to the nerve - this may be the result of injury, a dental or surgical procedure, or infection.
Family history (genes, inherited) - 4.1% of patients with unilateral trigeminal neuralgia (affects just one side of the face) and 17% of those with bilateral trigeminal neuralgia (affects both sides of the face) have close relatives with the disorder. Compared to a 1 in 15,000 risk in the general population, 4.1% and 17% indicate that inheritance is probably a factor.
POSTHERPETIC NEURALGIA
When chickenpox is contracted during childhood, the virus that causes it, herpes zoster, can remain dormant for decades in the nerve bundles near the spine. The virus will sometimes reactivate, causing the condition known as postherpetic neuralgia, or more commonly, shingles.
In cases of postherpetic neuralgia, the reactivated virus travels around the affected nerve, causing pain. The herpes virus can affect the trigeminal nerve, resulting in postherpetic neuralgia, or pain, in the facial areas supplied by the trigeminal nerve.
Definition of AD
http://www.fpa-support.org/2011/01/anesthesia-dolorosa/
Pierre, there were no guarantees when I went in for surgery…it’s important that you read and research as much as you can and then make a decision it’s a personal one.
My MVD provided me with a period of NO TN pain…and even now as my pain has increased it is still better than before MVD.
Others like Jay and Ed below have had great success, and still others wake up from MVD and still have pain.
Make your decision with eyes wide open and continue to hope and be positive!