DOUBLE VISION AFTER MVD SURGERY FOR TN

Do you still have the double vision?

Hello there.

I have actually been avoiding posting on here as I know everyone must have different reactions to MVD surgery and thought if I wrote about my on going problems it may put some people off the surgery that may go for it and are fine.

I realised after readng your message that whats the point of this forum if people think like I did.It should be about the good and bad things so people can have a good long think about major brain surgery for this terrible condition.

I still have my double and horizontal vision problems(My sugery was 2nd Dec last year) I have been told I will need two corrective eye surgeries and at the end of it will probably still be able to see double when I look down.

I have a piercing stabbing pain in the top of my head(surgery side)something else I didnt have before surgery.

Other then that I was still getting jaw pain flashes and after about 9 weeks post surgery I had the full on pain in the whole of the right side of my face,it effected my jaw,my tongue,my nose,my temple etc.

At this point I was taken to a walk in centre who wouldn't entertain me as they said it was either neurological or dental.I went to an emergency dentist and after xrays told  me I had a filling that appeared to be touching my nerve.To cut a mile out of what happened from here I insisted my dentist removed the tooth (he didn't want to).I have not had the jaw pain since!.During my months of agony and numerous dental xrays I was told my teeth wern't the problem..I believe now my surgery was not needed and my dentist missed the causes for it! 

I don't know whats going to happen to me now.I always try and stay positive but its hard.I feel like I had the operation for nothing,all I gained were additional problems.

I didn't have the nerve cut during my MVD.During  my pre op visit,having that done was mentioned to me and my daughter immediatly spoke up and said a loud NO.

She told me and the consultant that she had researched all there was on MVD surgery etc and having the nerve cut could cause all the things you are experiencing now.He did tell us,yes these things could happen but when the facial nerves recovered fully you should feel the benefit..so on saying that I think you have a while to go yet and hopefully all these things happening to you now WILL improve.

I have been told (numerous times)that MVD surgery is major brain surgery and even without complications can take at least a year for everything to settle back to normal.

I'm sorry I couldn't be more upbeat in my reply.

Don't let the hospital fob you off,get the help you need,be insistant and persistant until you get the answers and solutions you're looking for.

I hope in another couple of month,you write on here again and to say everything is fine,it just took a while but settled down.

All the Best

Christina

 

Hi Christina, Thank you for reading my post and for your comprehensive reply. I'm sorry you are not yet fully recovered, I know how frustrating this is as I am in much the same position myself. I must say that the stabbing pains are completely gone for me but like you I am suffering from the after effects as I described before. You make a good point about publicising the true facts of how you feel so that it might help others to make a more informed decision before opting for the surgery. I would have waited considerably longer before having it if I had known the outcome, and even then only as a very last resort. However, the real point of the discussion is to try to determine what we have in store in the longer term. Like you I also have been told that it could take 12 to 18 months for things to settle down after the surgery and it is only then that I will know how much improvement ther will be, if any. I am hoping that somebody out there who had the surgery say 2 or 3 years ago might share their recovery story with us.

Good luck with the eye procedure I hope it is successful for you, I have also been to eye specialists and may also have to have some procedure carried out.

Cheers,

Tom

Hello,

I suffer from hfs, had my mvd surgery about 16 months ago, and have read quite extensively on reports by recovering patients. While personally I have been very fortunate with little ill-effects, others have reported symptoms similar to what you described. Most of them resolved over varying period of time. These are found in the HFS and TN support groups on Facebook.

Hope you have a swift recovery.

Hi YKL,

Thank you for your reply, I take some encouragement from what you said.

It is good to hear from someone who has made a good recovery.

Best wishes

Wow I have been suffering from constant tn on my left side of my face feels like someone is crushing my face an my teeth pain is rough and the lighting stabbing pain sucks. But I'm sorry you are going through this

christina1956 ,

My double vision is partially going away I've got it because God is still healing me,thanks to God, healing and his healing power and all of you praying for me.

I still have douple horizontal, vertical, and 3D Vision problem, but when I looked down at my feet I can see to like I normally erson now sometimes I have two feet instead of four.

Ever since I was operated on I have a round piece of glue over my ound were my round bond plate was screwed in, and it has been on my head since my surgery date on July 27, 2016, when I was operated on and I got out of the hospital August 8, 2016.

This glue is still over my wound round circle my Primary care doctor does not understand why the gluet hasn't fallen off yet.

My neurosurgeon will not even tell me anything about it, and still won't even see me for a 6-month follow-up neither will my neurologist .

So I went to another hospital have gotten a different neurologist with him I 4got to ask y glue was over my plate in head, I I have a follow-up appointment with him on June 6, 2017 .

While I was in his office for my first visit I forgot to inform him about the Glue because my memory had been ashot since I had the MVD surgery but it's whatever though my double vision is better still problems with horizontal lines and vertical and my squares, have trouble some time looking up at the top of my ceiling I have some heating vents in my ceiling a square sometimes depending on how I'm looking r still double cross as two not one.

My opthamologist wants me to get some prism glasses supposed to correct the double vision vision,, vertical , horozontaland 3D but he said so I will have to get them change every 4 months so just wait and see how my eyes come together a bit more b4 get glasses go back in April 2017.

I'm waiting it out and praying for and along with all of you guys and I would like to thank all of you for praying togethe, I will keep u all in my prayers.

.

Prayer heals all. I know that my Lord and Savior is healing us all of this dreadful disease.

Go out and tell everyone u come in contact with about TN. This is the only way doctors will b able to find a cure bsides surgery for this illness.

God is in the healing business, keep him working it out for us.

rGod bless us and keep us and give us peace

Guys

I am still not better 28 year now. My advice dont go for surgery

Regards

Niraj

No tumot but double vision what is being done to you, to make DV be gone, besidez upgrade in glasses?

I've had high nlood pressure for 3 yrs.

I take my Nicardipine 30 mgs twice a day, I can see you being a blood pressure pill

God bless,

God bless us and give us peace