Hi, i had blury vision for a few weeks post surgery and during the time that i was on Tegretol ( pre- surgery) , but that has gotten much better. I have many other side effects post surgery. No TN pain, but constant discomfort from the face numbness and pressure/ pulling like sensation, flared sinus in the left nostril and eye ( waters preiodically through the day and eyes are more sensative to bright sunlight), post mvd MRI also showed a small Pontine Infarct ( brain stroke). Although i am not seeing effects of the infarct at the moment, i want to have an MVD expert look at my case to see if any of this can be releived or i just have to live with it. Most likely, i know it's going to be the latter. In typical medical fashion though, my surgeons who seemed so caring pre-surgery have pretty much ignored me tthrough my follow ups and now have no future appointments or scans set up to see how i am doing.
Clint72,
I will know where to go if I learn of this happening to anyone that I come in ontact with. Is there a Facebook page dedicated to MVD? You are a success story.
I had my very first headaches today, since they stopped. I told you I was having the crawling sensation. The headache was in that spot.
I was a very active person before that I I help kids in Edmond, Oklahoma. I Really miss my kids and this is holding me back.
I have gained 10 pounds and I really miss walking 12, 000 steps daily.
I was about to set up a walking group with the neighborhood women, but with double vision I can't do.
Your success story has pushed me , once I get my eyes corrected and I'm back on my feet.
I''m going to do
even more than I used to do.
Today Icalled a TN support group and from now on the way I go people that I see I would tell him the story about TN.
I have learned that it does not matter how good your insurance because I had United Healthcare one of the best insurance and I came out with double vision.
I will also make sure that I' mentioning your doctor in Wichita . And if I run into someone who has this Dreadful disease and it is a disease.
I want to thank everyone on this forum for sharing their stories
I am going to dedicate my life to helping doctors find out how this disease starts, if its thru meds/mixing meds, procedures done or surgeries or just a tooth that is good being removed.
I weight 220 pounds last year,, walked it down to 155, was on way 2 ( 150. )
Now I am ten pounds overweight. All I can say is double vision (devil) get out of my way.
I am going back to walking even if I have to do it with 1 eye closed I have so many allergies to meds. That is why I am so drugged up and hubby want let me drive with the one eye.
Walking will b my new car. Luv all u MVD sufferers.
Thanks 4 all u guys help
,God bless,
you and keep you and give you peace
Hello Kevin,
I had MVD surgery about 17 months ago. It is best to have someone around, however, I was in the same boat as you are...nobody around. But It was manageable.
First of all, PLEASE DO THE ALL THE RESEARCH, RESEARCH AND MORE RESEARCH,until you have exhausted ALL possible pros and cons of the procedure. Also, the track record of Surgeon who will be performing the operation.
I wish I had a success story as others do, but I do not. It failed. No reason, just alot of theories. That is where RESEARCH comes in to play. I knew the risks and they were really really low on the cons side, and high on the pro side, but I got the side effects that were mentioned in my RESEARCH anyway.
Never give up hope, you have the same chance of being a success story as the others. Unless you are a very poor candidate as your surgeon will determine.
I pray this helps and you are a SUCCESS STORY!
God Bless,
Greg
, Greg 66242,
I heard of a man on MVD it's was in TN forum years ago in olfdiscussion page, He went to have his done did not work and went back in and dovtors saw padding had moved corrected teflon padding and he was doing great.
My padding is ok, but my double vision is not as bad as those shocks were,
You just need the doctor clint71 had.
Don't forget you just have screws, were wa titanium plate was put. So all the doctors will be doing is unscrewing the titanium plate.. Witichata doctot sounds good 2 me, try it, isn't that corrected surgery.
God bless
you And keep you and give you peace
Hmm, can't remember if I said, but , I had Gamma Knife Radiosurgery. Successful. Okay to drive straight after, no blood.
'
Valkyrie
My surgeon said if I had any one of the other procedures I would not be able to have MVD, if they did not work. Surgeon was saying if nerve was cut or burned.
This is y I had MVD, wish I had followed the yellow brick road, and gone with Dorothy.
That is correct. 2 of the neurosurgeons I had consulted prior to getting mvd told me the same thing. They said that with gamma knife it would take a couple of months before i see pain relief but the pain would return within a year or two and then mvd sucess rate goes down. So they all steered me to mvd and of course that's not perfect either.
Mine said that with the latest Gamma Knife technology it would last 3-5 years and might go longer if I didnt have another condition such as MS.
Guy I saw at the pain clinic said it depends on how much radiation they use. If they are a bit too careful and set it too low it comes back sooner. . I chose Gamma Knife because its fairly painless, nobody dies from it, nobody has a stroke or brain hemmorage from it and apparently some people are painless right away. We will see
such differeing information from different neurologists. The surgeon who did my Gamma Knife said it does not stop you from having other procedures because there is no cutting involved with Gamma Knife. He said whichever op you chose, it comes back after a time and each time you have any procedure it lasts less time each time they do anything. This proved true for my mum who had Tn also. So I expect to end up one day on tons of medications, watching horrible daytime tv but not knowing how horrible it is.
Hello, Valkyrie,
Much needed information, I knew that gamma knife was no cutting.
Went on 2 explained it as laser burning, he said once this was done, pain relief was not permanent.
I wanted permanent relief but not double vision.
I was given bad info bout other choices. Next time I will b on my way to Kansas. I want Doctor Who have 500 MVD surgery under his belt
Bless you,
and keep you and give you peace
Hello, Saaz79347
Look as if both of us were lead astray, or just not given the right information.
My hubby talks of moving to Kansas, seems like a good idea 2 me, now.
God bless
you and keep you and give you peace
Hello, valkyrie
I'm glad you had success with your procedure.
I hope there are a lot of people on this forum reading your info and others, so that they can be helped and make the right choice by what we are texting about problems and our successes.
God bless
you and keep you and give you peace
Hi Valkyrie,
One thing is certain when it comes to this horrible condition and that is as you pointed out, very differing information from one Neurosurgeon to the next. Shows that because this is so rare, they haven't invested the time or research to really learn about it. Very rare to find a neurosurgeon who actually wants to learn and collects data about how different patients feel so that they can make better decisions about the correct course of action for each patient.
Hi Stupid1,
In all fairness, i wouldn't say that my surgoens led me astray. MVD is known to be the only possible lasting solution to this condition. My contention is that they decided on the operating table to also go ahead and perform a partial rhizotomy and that is a very tricky procedure which has to be done very carefully. I understand that they probably made that judgement because they were uncertain that in my case with a thick artery like the Basilar causing the problem, mvd might not work 100%, but they definately proceeded on the cautios side as far as they were concerned and did not think about the consequences of the side effects to me. My other problem with them is that there was no real follow up post the surgery to see how i was doing even knowing that they caused a lot of complications including the minor infarct, flared sinus in addition to the full numbness.
Hello Saaz79347
Saaz,
Your comment is right on, we need to teach our doctors, because I definately will teach mine.
I learned my lesson the hard way, I should have gotten 1,2,3,4 ,5, and even 6 opinions b4 I have anything done. I only use my neurologist and the neurosurgeon,
I did wrong.
Surgeon said I was going to be in ICU for 2 days 1 day in the room and out of the Hospital.
Bless you
and keep you and give you peace
I researched the doctor John Dickerson from Kansas. The one with the 500 MVD procedure resume and i didn't see any good reviews. Infact, people complained that he didn't give them the time during consultation, and appeared like he wasn't listening. I know we can't go on one or two reviews like that because opinions are subjective and each persons experience is different, but generally, one should never walk away with any such feelings about a doctor, so i will research some more before making that appointment. I visited one such expert in Houston ( Dr. Dong Kim), he gave me 5 minutes and started to make his way out the door when i told him i had a couple of questions. He also told me that MVD is really simple so i don't need to worry. There is a trade off, experts will be arrogant, i think one has to make a couple of appointments to really make an accurate assesment of who to pick, at least, that's my thinking now.
Hello ssaz79447
Can you explain what a rhiztomy is.
God bless
you and keep you and give you peace
Hello saaz79347,
MVD maybe some simple to that doctor but not to the patient at least not to me
My surgeon was so positive everything went ok, that he sent his PA to Watch Over Me.
My poor hubby didn't get to talk to the doctor after my surgery until like I was in the hospital about 5 days.
Talking text is killing me
,
God bless
you and keep you and give you peace
I read similar reviews. Most complaints were the fault of the clinic where he practices, such as long waits for appointments, slow to call patients back, etc. I saw no complaints about his ability as a surgeon, and that was my only concern. I researched TN and MVD so much that I already knew everything he was telling me about the procedure, so I knew immediately that he knows what he's doing. Take those reviews with a grain of salt...some people could eat at the best restaurant on Earth and complain that the napkins aren't large enough.
Cliny71
I thought I researched also, but after talking with my neurosurgeon all I had research when out the don't.
But you were right about waiting. It is too long for appointments with what neurologists and neurosurgeons.
God bless,
Us and keep us and give us peace