DOUBLE VISION AFTER MVD SURGERY FOR TN

Brain and nerves
1

Has anyone out there had double vision after their surgery?

It totally disorientated me.I had motion sickness and the lights hurt my eyes.

I left hospital on the 9th day after surgery which included 2 visits to the Opthamologist whilst still in there.They said all they could do was put a patch on one eye so I could just see one thing instead of two.They told me I had double vision and horizontal something or another,so basically I can see double but I can see things at a slant as well.It's horrible.

I am now 6 weeks post surgery and STILL have the double vision.I'm finding it very difficult to cope with.I've had to make so many adjustments and my confidence has disappeared.

First I was told it would only last a few days,then when it didn't go I was told up to 8 weeks but after the results of my second visit to Ophthalmologist I was told my 4th cranial had taken some hammer and if it didn't resolve itself then I could be looking at 12 to 18 months for corrective surgery!

I've looked on different forums and from what I can find,double vision doesn't seem something that many mvd patients seem to have had,or if they have,it's only lasted about 3 days.

If this has happened to you or anyone you know.I'd appreciate you letting me know the outcome.

Best Wishes to all you people out there with TN and other Neurological problems.

2

Hi Christina,

There is a gentleman on the facebook hfs support group that had double vision for 4 months after mvd surgery. I have copied his post below and hope that yours will also fully recover in time (sooner)

Daniel Prudhume Hello!

Dr. Alksne cured me of HFS. I had four months of double vision in my left eye from the surgery, not fun. I would have Dr. Alksne perform the surgery as soon as possible, no reason to live life with HFS longer than you have to.

3

Thank you for pasting that remark on here.It's given me a bit of hope.

All the best.Christina.

4

Hi! There,

I had glycerol put into my TN Nerve 3 weeks ago under General anaesethic and yes my right eye is giving me endless problems. I am fine with long distance however short distance is a problem and I have blurred vision with that. Also the eye becomes droopy and I feel a pressure behind it. I am having a CT scan of my head this week as the surgeon and neurologist said the eye problem should not be connected to the procedure I had.

5

Hi Christina, I do hope you are recovered by now.

I was searching for a discussion on the after effects of TN surgery to see if anybody was having a similar experience to myself. I had the surgery 3 months ago (the nerve was cut) and while I did expect a numbness in my face it is in fact considerably worse than that. I have a tight feeling around the eye and also a dry eye for which I have to use special drops. I also have to use a lubricant every night as I cannot sleep otherwise due to a "jumpy" feeling in the eye. Around my mouth and the front of my tongue is sore and tight all the time. My taste is also affected and the ability to swallow. I am told that the after effects can be different for patients and I don't know if things will improve in time. I wonder if you or anybody else had any of these symptoms and if so did they improve or disappear? Thanks for reading this.

6

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

 

7

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

8

Hi All,

still suffering with post op symptoms after glycerol was inserted into my TN nerve in February. Basically nerve is dead,  still have numbness down the right side of my face, stabbing pain at my temple & tightness around my eye. Have had an upgrade to my prescription glasses which has helped with my vision. Tingle in my jaw and my mouth and teeth still feel like the after effect of having dental anaesethic. Just so sorry and perturbed that so many of us are suffering and when we thought surgery would be the answer. I am very tired of reporting this to the doctors involved and have put in my own coping mechanism. Still on a lot of meds and don't know what I would do without them. Have also been diagnosed high Blood Pressure so on tablets for that- sometimes I wonder if the bp causing pressure on the blood vessels caused all the original TN. This is refuted. 

Take care everyone and at least we are not alone.

9

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.

10

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

11

Hi Cristina

I'm going through the same thing regarding double vision.

I had before the operation and it was because my tumour was so close to my left and very swollen. They gave me anti inflammatory tabs which took it away a week before surgery. I'm two weeks post op and I'm still on the tabs, so I hope this isn't a permanent thing. Everything there has been disrupted I'm sure we're going to be fine if we just patience.

I'm so grateful they got most of the meningioma out, I feel already a better quality of life.

All the best I hope it sorts out for you soon!!

12

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

13

Do you still have the double vision?

14

Had surgery July 27, 2016 stayed in hospital

Until August 8, 2026, have double vision

Have numbness in right side thight and calf on top of skin.

My doctors P.A, was the only one to talke to my husband it took about 3 days b4

my surgeon talked to my husband

My husband was not told that a muscle was cut in my neck/I was told by doctors P.A., I didn't know any thing about cutting a muscle in neck.

My right thight began to feel numb about 4 or 5

Days b4 I was pushed(2 b released )out of hospital

It seemed to me that my surgeon, and his

P.A., only cared about his MVD. His P.A, talked

To my hubby about putting me in a nursing home, o

Of Course my hubby said no.

Something, I didn't know is that for 2 days I lay

In ICU staring up @ the ceiling seemed I could not

Communicate until my third day. Oh, the nursing

Home discussion was had when I started 2 ask about why my right thight was feeling numb on top of my skin.

When I returned home my whole leg on top of the skin felt numb

(all the way down to my calf). Typing with 1 eye is not good 4 me. I went for my follow up and all my surgeon talked about was his MVD surgery.

I kept asking about him about

Y my right thight and leg was numb/ he said bend, toes, raise leg, make toes like a pigeon, didn't say anything about numbness. I made appointment with him again but I will be seeing his P.A,. On Sep. 19, 2016 his Secretary said he might have time to talk with me quickly.

I had follow up with him on August 11, 2016.

Next appointment is with his P.A, on September

19. 2016. I never told him to cut any muscle on my neck. What was the purpose of that (I think this is Y I have double vision.)

Has anyone had muscle cut in neck I was in shock when I was told by P.A., that the reason I had to take spasm pills was because doctor cut muscle in my neck. I have one of the best insurances

United Healthcare and I had to tell my husband

Because he was not told about any cutting of muscle in neck, heck he was not told y I was staring @ceiling for 2 days. My hubby didn't even know I was staring 2 two days because I suffered a stroke. I am good now but this double vision is awful, when does it stop.

Had to get this awful surgery off my chest, I am

Sorry for Rambling on anout my problems.

I found out I had a stroke when I called my

Neurologist, (he was the one who recommended my surgeon) I called for an appointment he told me to come in the next day. That was after I went to the emergency room and had MRI, because I had fallen early in the morning on my way to the restroom. I had gotten a walker and didn't want to waked up hubby.

I went 2 see my neurological, the next day.

My neurologist had my MRI from the emergency room. This was when I found out I had a stroke must have bn during surgery or after seems no one knows.

Maybe when I was staring @ the ceiling for two days. I dont know if we can mention the hospital, but I was at one of the best hospitals in Oklahoma City. (Integris Baptist Hospital)

I hope no one has these problems that I am having,

I hated this double vision wirst than anything

This is why I wanted to tell my story

Christiana

What is being done for your double vision

Please tell me it has cleared up

15

Hi Christine1956

What is going on with your double vision,?

Iam suppose to do pencil exercises until I see doctor on September 19th 2016.

Have yours been cured as of yet?

God bless,

God bless us and keep us and give us peace

16

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

17

I had the double vision for 4 months and then it disappeared. I have been to the eye dr. 3 times and they kept saying it takes time. I have complete numbness on the left side of my face. I put chap stick on all the time. It has been a long slow recovery for me. I had my surgery 6/15/2016. I just started driving again. My nose runs on the left side all the time. I get no answers just told wait it takes time. My mouth is always dry and I have headaches every day. They found a vein was looped around the nerve several times and they had to cut n it then burn it on both ends. I am trying to be patient. Hang in there each case is different and the results are different also. Kathy F.

18

Hi Christina.  I see this is an old post, but I'm in week six of the same problem.  I had my second MVD surgery October 31st.  I'm curious if the problem finally went away for you?  I hope so!  Thank you!

19

I had meningioma surgery 1in 2014. Location was bad, near brain stem. Most was removed then radation of the remainder. The operation was a success in all ways except nerve damage. I was left with numbness over half my face. not much taste anymore. Muscle weakness around left side of mouth makes speech more difficult (slight slurring) when I am tired.

The worst of all is double vision. Inclusing torsion (one eye sees at an angle so the two vision gazes are not side by side. One is at 45 degrees). I was told to wait which I did for 12 months. Not much improvement. I finally had surgeries on both eyes to try for correction of double and torsion. Results were somewhat  better vision, but still dizziness and much difficulty navigating through an average day. Prism glasses help with straight ahead gaze (driving and running) but not with other normal vision during the day.

The lesson is this. Waiting for nerves to heal takes a long, long time (years not months). In the end double vision (with torsion) is not correctable by surgery.        

20

Hi Christina,

My name is Kathi, I had endoscopic MVD surgery May 2012. The surgery was a success, but i had post surgery cranial swelling and double vision in the left eye. I was 49 years old at the time of the surgery.

Unfortunately, the double vision, although it has improved slightly, not enough to go back to driving comfortably, sometimes the double vision makes me very dizzy.

The stroke & the damage it left after the surgery compromised my balance, so I'm not 100% the person I was before the surgery.

I was VERY lucky though. I am alive. The TN is gone. There are other challenges, I admit & I fight those daily, but I am adjusting to my sight, my balance and accept what I can't change.

I hope your double vision has improved.

I hope you are doing well.