MVD Surgery Recovery

, 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

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

Clint72 ,

V oice text

I meant to say that I researched also, but all that I researched went out the door.

Clint71,

You are an encouragement for other people and all the other people on on this forum who are telling their stories. I just wish I had found it bt my MVD. I also wish there was some way we could get the different choices out about TN. So people that who have TN actually look at the choices

Some people don't have Internet or this forum..

Everyone have a gods day

God bless

you and keep you and give you peace.

The first Neurologist I had confirmed the GP's suspicions (and mine) that it was Tn, the said "your GP can prescribe something for that, Tegretol I expect" and blithly left the room. No mention of a further appointment or anything else. The Second Neurologist my GP sent me to did not know a whole lot and I found myself telling him stuff I had read on the internet and asking what he thought about it. I also had to run by him the drugs I had heard of on a Forum and he put me on one of those along with the Tegretol. He then gave me a referral to a surgeon without waiting to see if the drugs would work. Surgeon immediately started talking about MVD but since he had the MRI images of the previous patient still on the screen behind him and he did not seem to know that I had an artificial heart valve, I was not filled with confidence by this man. My (adult) children were the ones who suggested Gamma Knife which they had found when reading up on Tn. The world is filled with mediocre Neurologists and Neurosurgeons, hard as it is, you must find out as much as you can about each one you are sent to so you can pick a goodie.

Hello Valkyrie,

Primary care doctor sent me to a neurologist,

Dr. Wood, he is a great doctor. I made an appointment to see him after my surgery it was really quick and I could see that he was really angry as he was talking to me about complications I was having, because of my surgery).

He is the one that put me on Gabby (300mg at bedtime) and then teletal(sp)(taken together).

I could not take Tegretol because I have a whole lot allergies. Tegretol makes me throw up. My surgeon (Dr. Phelps) said that he saw TN om my MRI.

I know that I did have the TN without MRI because of the symptoms.

One of my adult children the oldest did talk about the other procedures

I told him that my surgeon said, if I had any of them and they did not work I would not be able to get the long-lasting MVD.

So with my surgeon's advice I opted for the best one and now I get what I deserve double vision.

I am a very active person and I can't do anything that I used to do. I'm walking with a walker to make sure that I don't accidentally open both eyes at the same time and fall like I did one morning on way to restroom early one morning.

My neurosurgeon won't even tell me anything about my eyes, and I keep asking him. Second follow-up I am going back again on the 19th and I won't be on so much drugs so that I can ask and make him tell me something about complication.

The only Doctors who I am constantly in contact with is my primary care Doc and my neurologist. Seems as if my neurosurgeon is running from me. I called my neurosurgery nurse yesterday about some headaches I have started to get and I haven't got any contact back from the doctor or the nurse yet.

I had a follow-up appointment with him on the August 11, 2016, and hey just got out of the hospital August 8, 2016. Again for rambling on.

I am glad others on forum had a sucessful out come.

I will let everyone know after ,I see my new optometrist who specializes and double vision, I just thought about something I might have to check her out

Better get a first, second, third, fourth and fifth opinions.

I especially agree with the mediocre neurosurgeons. These doctors if they don't know what they doing they should at least send us out too talk to people who do these procedures. Did your neurologist or your neurosurgeon send you out to the gamma knife doctors?

God bless

us and keep us and give him space

.

nobody sent me to the Gamma Knife Doctors. My GP gave me the referral himself after my kids and I research the procedure and decided it was the best for me. When I got to Sydney, the Neurologist I saw there for the assessment (as to whether I was suitable for the procedure) said he could have done the referral himself since he was not the surgeon.

I was in so much pain and I didn't even need referrals either.

I just assumed with a professional surgeon he knew exactly what he was doing.

I don't like all of the complication and him not telling me that I have the complication, but sending out his PA who is still not telling me about the patience well I'm telling her what's wrong with me. If not for my neurologist. I would not know anything

The problems I will I'm having now was happening before I left off and I'm talking about the numbness on right side no Arm numbness.

Valkrie

Told me I had a mini-stroke told me I am sll clear good healthy lungs nothing in brain or arteries, I'm all clear this is what my neurologist has done since I had the surgery he has sent me for a MRA bubble bubble test of my heart

A major electrocardiogram done by a doctor

MRI of my pelvis area came back clear all of the tests I had came back clear and this is after the surgery

This is this is what my surgeon did for me put off the second follow-up for a long Time

Wants me to meet with his PA on the 19th of September and he might be there according to his nurse because I requested him and not the PA

This is what gets me through the day:

God bless

us and keep us and give us peace