Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
Hi everyone,
I am trying to figure out if its me or my doctors are crazy. Clearly its one or the other.
Went in for robotic thymectomy with a thyroidectomy at the same time on 7.8.14.. Woke up with a very hoarse voice which is not something to freak out about. Post surgery I had a lung collapse, ok, I actually had 2 lung collapses over two days so had to have bronchoscopy twice to try and clear my lung that had filled with mucus/fluid. (Totally horrific experience) First one was so uncomfortable that they knocked me out for the second one.
Anyways, here we are 6 weeks later and my voice is still weak and horrible. I am not exagerating when I say I am not understandable.
Was at the surgeons two weeks ago, who promised me it would return over time, could be up to 6 months... which is totally unacceptable so I just pray every day that it returns or gets better.
Today I spoke with my neurologist in the hopes of reducing my current dosage of prednisone (30mg) She informed me that both she and the surgeon are not sure that the voice issue is not myasthenic and she would like me to consider eithe ivig or uping the prednisone to 60 for a few weeks to see if that helps the voice issue. YIKES, not what I was expecting... I had surgery, I had 2 cancer diagnoses and now you want me to have IVIG?????? I hate ivig!!! Not only is that not remission that is in the opposite direction I want to go in. Secondly, the whole prednisone at 60mg, that is again, bringing me back to my darker days.
Don't get me wrong, I want/need to be able to speak its a huge issue at work, and I mean HUGE, but those seem like drastic treatments...
Please can someone who has had a similiar situation let me know what they think?
I am visiting the surgeon for the thyroid on Monday and I am hopeful he has some words of wisdom.
If this is truly yet another new MG symtom.. I think I give up!!!
I am trying to figure out if its me or my doctors are crazy. Clearly its one or the other.
Went in for robotic thymectomy with a thyroidectomy at the same time on 7.8.14.. Woke up with a very hoarse voice which is not something to freak out about. Post surgery I had a lung collapse, ok, I actually had 2 lung collapses over two days so had to have bronchoscopy twice to try and clear my lung that had filled with mucus/fluid. (Totally horrific experience) First one was so uncomfortable that they knocked me out for the second one.
Anyways, here we are 6 weeks later and my voice is still weak and horrible. I am not exagerating when I say I am not understandable.
Was at the surgeons two weeks ago, who promised me it would return over time, could be up to 6 months... which is totally unacceptable so I just pray every day that it returns or gets better.
Today I spoke with my neurologist in the hopes of reducing my current dosage of prednisone (30mg) She informed me that both she and the surgeon are not sure that the voice issue is not myasthenic and she would like me to consider eithe ivig or uping the prednisone to 60 for a few weeks to see if that helps the voice issue. YIKES, not what I was expecting... I had surgery, I had 2 cancer diagnoses and now you want me to have IVIG?????? I hate ivig!!! Not only is that not remission that is in the opposite direction I want to go in. Secondly, the whole prednisone at 60mg, that is again, bringing me back to my darker days.
Don't get me wrong, I want/need to be able to speak its a huge issue at work, and I mean HUGE, but those seem like drastic treatments...
Please can someone who has had a similiar situation let me know what they think?
I am visiting the surgeon for the thyroid on Monday and I am hopeful he has some words of wisdom.
If this is truly yet another new MG symtom.. I think I give up!!!
I'm sorry you have been thru such a rough time. I don't know anything about thyroid surgery, but I hope that is what is causing it and it will get better in time. I think your neuro is being thorough to at least question if it is related to mg. My voice becomes very weak when I am symptomatic mg wise. I know you hate IVIG, but when I was having it every 8 weeks, I would have this problem the last week or so, along with wobbly neck, blurry vision, and fatigue. The last 3 times, I have had ivig 4 weeks apart and this is really strange. Each time, I would loose my voice, AFTER Ivig, lasting longer each time. The third time it lasted 5 days. The first 2 times 2 doctors said it was not related to Ivig, and it must be I just had a cold. The third time they still weren't convinced. I can't have a cold all three times. And my voice is not hoarse .My muscles to speak are really weak. I understand how frustrating it is. I use my voice a lot at work and for 5 days I couldn't speak. So I don't know if it's from too much IVIG ( drs. say impossible) .
It does take time after a thymectomy to see improvement and sometimes people get worse before they get better. It would be interesting to see if your voice improved with one round of ivig. If it were me, I would prefer that to an increase of prednisone.
I hope things get better and that you find answers
Judith
I am commenting on this post regarding a comment from you on another recent post about your sleep at night not really being that effective.
Have you been evaluated for sleep apnea? Sleep apnea goes along with MG frequently, due to the increased weakness of the neck muscles, allowing in some the airway to partially obstruct, causing apnea. I have a real good neuro, and during my first visit with him he set me up with a pulmonologist for an evaluation.
Wife says I snore occasionally, but I never really thought it was a big deal. I felt like crap all the time, and then one day realized I couldn't remember the last time I had dreamed. The sleep study confirmed Apnea (which I never had pre-MG), and now I have a CPAP which I use every time I sleep, and I believe it gives me as restorative sleep as I can get.
Just a thought, and take care! Chris.,
Good evening! Because of the nature/location of your surgeries, and being intubated during surgery, I would think that there was a lot of irritation, rearranging, and just plain busy activity going on in and near your throat/vocal cords. So many nerves and nerve endings are cut, trimmed, moved during surgery, let alone the nearby tissue and muscles. I would lean towards blaming the surgery than I would the MG. Have you been to an EN&T doctor?
Lisa
Yes, I agree that there is some "unrest" in the throat due to all the activity in that area durig and post surgery but after 6 weeks you would think there would be some relief.... and now they want to play around with IVIG and my prednisone dose, which will do nothing if its just major irritation.. I just dont want to be taking steps backwards.
Do you think its MG or do you think its irritiation from surgery, I guess thats the question. NEVER had this kind of voice issue before surgery. Was always a slurring issue, not a hoarseness issue. This makes me sound like i have the plague.. and lets just say .. drive thru starbucks is not an option..
thanks for being "there", "here" whatever.. you guys are the best!!!
M