February 28, 2018 at 5:43 pm
Yes, the ice-pick (good description) pain went away eventually. However, even now, every once in a long while, it visits me. Not as sharp but, nevertheless, there. Like an old friend checking in on me. Ha! I know the vision thing with me did alter things. Even after surgery, different sensations came up and I had to get used to them. I can tell that the muscles/nerves in my one eye suffered permanent damage, but I’ve learned to compensate and I hardly think of it. I do, however, need to watch my peripheral, especially when driving. I simply do not have the range of motion that I had prior to GBS, worse to one side. My vocal chords have also prematurely atrophied, and it’s like I have lost a lot of my voice-volume. My doctor says this is most likely a long term effect of the M-F nerve damage.February 28, 2018 at 2:47 pm
That’s so true how you say “accept and work around.” It’s been a new “normal” ever since, but not exactly a bad thing. More like a shift in life and lifestyle really, something which works out with time. When I finally embraced the changes, I found peace. I’m glad to hear you avoided the paralysis like so many experience with Miller Fisher. It’s a reminder to me, daily, of just how frail I can be and how I lean into Grace moment by moment for stamina and strength, even after 17 years post GBS! The experience definitely resulted in a slower pace of things overall, but my days are filled with what I am able to do with my limitations and I’m good with it. The pain behind the eye… oh, yes, remember that well. Sharp, piercing, same place each time. My neurologist said that it’s a good thing, the body making attempt to repair that damaged mylen. I say have hope for your future… you’ll live to tell a great story and give strength to those newly challenged.February 28, 2018 at 12:26 pm
Excited to hear of your healing progress! I had the same double vision, although mine did not resolve in a year, which was realigned by eye surgery at the Doheny Eye Institute at USC in January of 2001. Since then I’ve been fine, with just a tinge of awkwardness in my peripheral, and a slight decrease in range of eye motion. That said, I’m so very grateful. The Miller-Fisher took out the vestibular system on my right side, which left a residual of motion sickness and dizziness/occasional vertigo. However, even with that, I’ve adjusted fine. Like yourself,I was spared the breathing involvement as well. 10 days in ICU and another two weeks in rehab and I was free to recover at home. GBS did end my 27 year career as a school teacher, but since I’ve found other things to do that I love. A journey I would never have dreamed of. Long distance run for sure but, by the grace of God, so doable!September 6, 2017 at 11:59 am
Hi, Angelflow, how are you doing? Have been away, just now revisiting, and am anxious to hear of your progress, hopefully positive.December 18, 2016 at 12:03 pm
Similar to heeljeff, I experienced the same. My diagnosis being Miller-Fisher, the damage was descending, starting in my vestibular system and eyesight, with mostly upper body involvement. I remember thinking, “Today, I’m going to wash some windows” during my recovery at home, and started in with my normal mode. After twenty minutes, my entire upper body muscles went into acute fatigue and borderline numbness. It took me 48 hours to return to my baseline, with normal, altered strength. However, walking I was fine, all lower body. So weird… it certainly taught me where my limitations are! 16 years later, I still have not returned entirely to my pre-GBS self, but I’ve adapted to these things and now little/no bother. I just have to watch myself, and be realistic as to what I can and cannot do.December 17, 2016 at 12:09 pm
Absolutely, I would suggest not over-testing your eyes. You can try an eye patch for when you do computer work or read, which will allow your dominant eye to focus and get the job done. A little strange at first, but your brain will adapt surprisingly well with the patch. But wear it off and on, not all the time. When you take a stroll, no patch, just let your eyes wander and get sunlight.
My neurologist said to allow this to take place for a year, and see if there is any improvement whatsoever. If this started for you in June, then you’re halfway. I’ve known some GBS patients to take 8 months to start seeing noticeable improvement on the vision. Then, from there, the healing is quite rapid. I hope this for you. My prayers for peace for you today. The waiting is truly the hardest part.December 15, 2016 at 2:52 pm
I’m sorry you are experiencing such weird symptoms, Angeliflow. I do remember having pains and almost like mini-shocks of pain going on around my eyes at the time. My double vision lasted a long time, and only strabisimus surgery made it go away. I wore an eyepatch over my right eye, which was the eye that was affected by the GBS. It was always worn over my right eye. Otherwise I simply could not function visually, not at all. If I didn’t wear the patch, i had to close my right eye to see. My good, left eye became dominant over time, and I could see well, just didn’t have depth, like everything had a “flat” appearance. However, I did get out, take strolls, and even learned to drive with the eyepatch. After surgery, I felt so relieved, it was like getting a new pair of eyes! However, you may not need that, for time may well heal your awkward vision. I pray it will. Hope this helps.December 13, 2016 at 11:44 am
Yes, Tarhealing, absolutely with both heat and exhaustion. I find that it’s the brightness of light that bears upon the compromised nerves, hence affecting muscle stamina. Even going into a mall or Lowes (used to be even a grocery store), would throw up flags and take me down a notch. Another thing my neurologist pointed out was that actual processing from my eyes to brain would be slower, and that stimulus overload might be expected, and result in exhaustion. And was he ever correct on that one. To this day, if I swing my head quickly from one thing to the next, or from one side to the other with any suddenness at all, I end up in a dizzy slog. Similarly, if I am in a very busy place, taking in lots of visual things, I get fatigued quickly. Oddly, it’s the same with being a passenger in a car. So, it’s changed my lifestyle somewhat, but, like you say, it’s doable, and I don’t even think about it much. When I slip I simply know I’ll be dizzy with a bit of vision-blur for awhile.
Ever since my GBS onset, I’ve always gotten tired much quicker, just doing everyday things. I walk and swim a lot, even in the ocean, but with much less stamina than prior. It’s fine, however, I find myself enjoying the little bit that I can do much more than the quantity of competitive activity I did before my illness.
It sounds like your’s is similar, but perhaps not as severe as mine was. I think you’re healing fine and, what does not completely restore, your brain will thankfully adjust to, and you’ll be fine. Stay content… it’s really something that is acquired, and I think you’re doing well.December 12, 2016 at 11:44 am
The Fresnel did not work for me either. It was designed to retrain the eye, but there was no improvement whatsoever after many months. My optometrist even made me an “occluder,” a contact lens, clear, with a black dot the size of my pupil, to wear in place of the pesky eye patch. This I wore for nearly a year.
I made an honest schoolboy attempt at Vision Therapy. I understood the concept, and I can’t say it was harmful, but the nerve (6th cranial nerve, as I recall) was so damaged, it simply would not cooperate. However, I do remember some GBS folks who did have success with VT, so I gave it my best shot, but to no avail.
This is when my neuro-opth suggested I consider strabisimus surgery. The procedure was out patient, readjusting various muscles behind the eye to straighten my eyes out and return my single vision. I was desperate by this time, and went for it, and was glad I did. He said it may take a follow up or two to get it just right, but mine was fine after the first round. That’s not to say it was perfect, but I could now see in stereo, and had depth back into my visual field, which was wonderful. After a few weeks, my brain adjusted to the new-normal, and I’ve had no problems since, and that was 15 years ago. Only when my eyes are weak, or I’ve had more than one glass of wine at dinner, do my eyes begin blurring. Otherwise, all is amazingly clear.
I do remember wrestling with this decision, right up to the surgery date. That week, however, I’d received a phone call from a Navy Admiral in W. Virginia who had the exact same predicament with his Miller Fisher double vision, and had successful surgery to correct. His story tipped me over the line, and I was all in for the procedure. For me, it was the right thing, and I am thankful to this day.
Hope this helps.November 20, 2016 at 12:24 pm
You were blessed you found that therapist, so happy that worked out! Yes, I’ve known of relapse, but super rare, even with mainstream GBS. I’m wondering, do you experience any residuals from your MF experience at all on a daily basis? Even after sixteen years, I have balance issues, mostly motion sickness. I simply cannot drive in a car as a passenger, so I’m the designated driver fulltime! I cannot do boats or amusement park rides, and have dizziness often when I’m in a crowd and have to do a lot of head turning suddenly. My doc says that I don’t visually process as well now, it simply takes a lag of time for this to take place via damaged nerve paths. Even in shopping malls or stores, I can reach this stimulus overload point and just have to sit/lie down and recover. Overall more fatigue than before, especially upper body. Definitely an altered normal, but it’s all doable, for which I’m grateful.November 20, 2016 at 11:54 am
I also tried the prism glasses, and they didn’t work for me. My double vision was severe, not just blurry. My eye doc had special instruments and could measure my diplopia accurately, which would be the distance between my double images. He said it was definitely neuro-muscular. I went to a visual therapist/balance therapist, and they are truly the best and most informed, as Tarhealing describes. They helped me tremendously. My double vision, however, did not improve sufficiently, so I was referred to USC for what is called strabisimus surgery, which is what they do to correct lazy-eye in children. It’s an out-patient procedure. This adjusted my eye muscles so that I could have singleness of vision again. And it worked amazingly well. It took a while for my brain to adjust to the “new” vision, but it was successful, and I know a couple of other MF folks who had the exact same surgery, and are fine. Up until then, I wore an eye patch over my affected right eye during the daytime. And for the last six months, my optomatrist made for me an “occluder” which was a contact lens with a dot on it the size of my pupil. This was like an eye patch, and worked quite well. After my surgery, and that was 15 years ago, I was fine and have been since.
Angelflow, from what you describe, it does not sound as though your vision is anything near as serious as mine was, and I think, with visual therapy, your’s may well correct itself. For the majority of MF folks this is true. But please know, that if it does not improve the way you expect, there is still hope! You will live through this. It seems like a long time in the day-to-day, but it’s a valley… and there is an other side.November 15, 2016 at 1:12 pm
Just to let you know, Angeliflow, my double vision was all you have, and more. I was a 4th grade classroom teacher for 27 years and the vision thing forced me to resign. My diplopia was so bad that I eventually had eye surgery on my eye muscles, which worked great. Today, I have a little double vision in my peripheral, but all else is fine. I don’t think you’ll need this, however. Your’s will improve ever so slowly. The day to day is a challenge, keeping hope mentally. It sounds like your eye specialist is addressing all he can, for his experience with MFS is most likely limited, for it is so rare. I agree with Tarhealing (above)… find a good physical therapist. They often know as much if not more than your doctors, and can give you relief.November 11, 2016 at 11:24 am
The eye strain with double vision is nerve-racking to say the least. Your muscles are over-compensating (over-working and straining) in order to get the two images together, but your damaged nerves are not allowing this to happen. Your brain will try its best to get used to this, so that you will not be so frustrated. As the nerves slowly heal, the muscles gain new strength to pull those images together.
Take heart, this is almost like your body being in a coma, where signals are confused for a time. We are all praying that you would be given grace to be strong and wait this out. Remember, this is not permanent, things will improve. My neurologist said, “It’s like watching an apple grow.”
ANY sign of change or improvement, please send out way. Lean into unfailing Love.November 10, 2016 at 5:14 pm
Most double vision MFS patients do improve given time. It’s not uncommon for this recovery of nerve conduction to take a full year, or more. You should be seeing your eye doctor on a monthly basis. He would then take image-measurements to track improvement. Even if there is an ever so slight reduction of “double”, then you know that’s good!
It’s hard to say what your muscle-tension symptoms are. But I know that during my recovery year I had all kinds of muscle/nerve sensations that I had never had before. My neurologist said that these were all part of the regrowing of the myelin, and to expect weird and unusual things to happen. This may very well be you, but I’d keep a record of these aches and pains and report to your doctor when you see her/him.
I can feel your frustration and remember well the helplessness that MFS speaks into your days. With God’s strength, don’t allow yourself to project outcome too far into the future. Remember, this is a season. It will not last forever, and it is not permanent. Prayers are with you, and please keep us updated.September 3, 2016 at 12:00 pm
Absolutely, Lillie, your words are encouraging. With my own sight marginalized for over a year, my lifestyle was limited with many days where I just felt so frustrated and powerless. I remember doing vision therapy too, which helped tremendously, working with people who specialized in distorted vision, and knew just what to do. It’s not an instant fix, for sure. These symptoms move in and take residence for awhile, but there is a diminishing over time, which gave me much hope.