Four weeks post-op and still wonky headed

[RichB57]

Hi all,

I've been reading posts on this site for months and answered a few posts from others, but haven't felt a need to ask a question until now, mainly due to the enormous amount of info that is already available here.  I had my AN removed just over four weeks ago by Drs. Barker and Lee at Mass General by retrosigmoid, and am now SSD and have facial paralysis on that side.  I had no facial paralysis for three days, so they are pretty sure that will clear up with time.  What really has me concerned is this feeling like I'm slightly drunk or on antihistimines.  Some days are a little better than others, but any time I'm out of a chair and moving around, it's there.  I'm getting out for walks every day (a little less than a mile) to get some exercise, but I'm wondering if I should try vestibular therapy or something else. The doctors have just said to be patient and that it will clear with time.  I did start to have some vertigo about five days before my surgery, but only needed a walker to get around for about a week after I got home from the hospital, so I think I'm in pretty good shape balance-wise.  Any advice anyone can give would be greatly appreciated.

Thanks,

Rich B

[mk]

Hi,

I also had retrosigmoid a bit less than 4 weeks ago, and I also have the "wonky head" feeling. I didn't have any major balance problems, and only used the walker for a couple of days in hospital. My doctors didn't think that I have problems with vestibular function and said that it will clear up with time. It is difficult to explain that wonky head feeling to my family, my impression is that even though all senses work well, it is a problem with processing of the information within the brain, causing the sensation of feeling slightly drunk like you mentioned. I also find that I have a bit of problem with my eyes working together and also because I am still very sore, that I can't turn my body very well, so my sense of peripheral vision is not that good.
I would say give it some time, this is why most doctors recommend at least 6-8 weeks before going back to work. After all, it is major surgery and our brains must learn to compensate for all the changes. Going out for walks is great, and I found that my symptoms were worse on days when I couldn't walk outside because of the weather.
Maybe we can be exchanging notes during our recoveries 

Marianna

[jaylogs]

Hello Rich, congrats on being a postie!! You'll be amazed at the different things that may happen to you over the course of the year.  Wonky head is definitely one of them.  I'm about 1.5 years postie and I am still there sometimes.  The change in the weather can affect it, allergies, you name it.  It's obviously not as severe as it was immediately after surgery, but its still there.  I like to think of it sometimes in these terms, my head is now like a vintage cam corder, you know, the one without image stabilization features that keep everything smooth when you are moving around? Sometimes I'll be driving and I'll hit a rough patch of road and things just get really jumbled.  I have to make a concerted effort to make it stop, and it does.  So that's my story. Of course, you know the standard disclaimer around here is that each person is unque and may and will have different outcomes.  But suffice to say, I think it's all normal what we feel weeks, months, or even years down the road.  Oh...to answer your question about rehab, if you are feeling pretty uncomfortable about how your balance is coming along, talk it over with your doctor and maybe you can get in to be seen.  But I'd give it a little time like MK suggest...6-8 weeks definitely will tell you what you'll need.  Hope this helps!  Good luck and take care!
Jay

[RichB57]

Thanks for the responses.  I also have the issue of the eyes working together.  I saw double all the time for the first two days after the surgery, and it occasionally pops up now and again.  It's so good to hear it from someone else who's actually going through it.  As much as the doctors seem to care about your progress, it's not the same as coming from someone who's in the same boat as you.  Thanks for the encouragement.  And MK, sure we can exchange notes.  Feel free to PM me anytime.

[nftwoed]

Rich;

  You wrote: "What really has me concerned is this feeling like I'm slightly drunk or on antihistimines.  Some days are a little better than others, but any time I'm out of a chair and moving around, it's there.

   Possibly there is some swelling yet just several weeks  post op. If you lost hearing that side, am I correct in assuming you lost the balance nerve also? There are two main branches. Whether traumatized or damaged, a vestibular compensation is taking place in a time frame it chooses. Much depends upon how much good function was lost.

  Re, antihistamines, yes, the meclizine and Dramamine antihistamines are primary for nausea, vertigo, etc, but, too much antihistamine can stop a nerve from firing which has potential to fire. So; Of those, it seems reasonable to me to take as few as possible. But, that is a Dr's call, surely.

  You have vestibulopathy. Good chance it will improve with time.

[leapyrtwins]

Rich -

I had the eye issues myself (double vision and eyes not working together well) post op.

I also had the wonky head for a while.

These issues should pass in time.  I wish I could tell you exactly how much time, but we're all different.

Hang in there.  Keep the faith.  Things will get better.

Give it a little more time, but if you find you're having a hard time coping with the SSD, look into the TransEar and/or the BAHA.

Jan

[RichB57]

Actually, there was no mention of losing the balance nerve, but considering the fact that the three nerves pass through the internal auditory canal (at least I think they do) you could be right that if there is swelling affecting the facial nerve, it very well could be affecting the balance nerve also. 

Today was a great day for me. After waking up with a monster headache, I felt better as the day went on and I realized while making dinner that the wonky head was the least it's been since the surgery.  I did the exercises you sent me Jan, so I'm just going to have to be religious about them every day.  I've been doing some of the first few since I was in the hospital, but maybe the others are helping complete things.  Thanks for the encouragement everyone.

[leapyrtwins]

The hearing nerve, facial nerve, and balance nerve are all in the IAC.

Facial nerves regenerate over time, although it generally takes a while.

Hearing nerves and balance nerves when damaged don't recover.  I don't know about balance nerves, but hearing nerves are far too fragile.

I had retrosigmoid and my balance nerve was destroyed; yours probably was also.

Jan

[RichB57]

I'll have to ask the doctors at my follow up appointments about the balance nerve.  The neurotologist did mention he lost the blood supply to the hearing nerve towards the end of removing the tumor, so it's no surprise the hearing is gone.  He also said there was heavy involvement of the tumor with the facial nerve, so again, no surprise that there's probably swelling going on and causing the paralysis.  I don't remember any discussion about the hearing nerve, but I wasn't very lucid in the hospital either.

[mk]

Actually the balance and acoustic nerves are the same nerve with two branches, called "vestibulocochlear" or 8th nerve. So if the neurotologist said that he lost the blood supply to the hearing nerve, ditto for the vestibular portion. In fact most ANs grow on the vestibular portion, which is pretty much impossible to salvage. As Jan said, sensory nerves are very sensitive and do not regenerate. The facial nerve (7th), which runs parallel to the 8th inside the IAC has a very high likelihood to be affected during surgery, but it can also regenerate.

Marianna

[RichB57]

Thanks Marianna,

You learn something new every day.  I'm noticing more movement in my face on almost a daily basis.  I'll keep doing the Cawthorne-Cooksey exercises and see if the balance also improves.

Rich B

[ChristineH]

I am 7 weeks post op and was having the same "wonky" head feeling and some balance issues. A friend who works with hearing aids suggested that I drink Welch's Concord Grape Juice. I must say, as crazy as it might sound, I feel MUCH better. My balance has almost returned to my normal state. The "wonky" head feeling doesn't come as frequent. Has anyone else heard this? Good luck in your recovery.

[leapyrtwins]

I am 7 weeks post op and was having the same "wonky" head feeling and some balance issues. A friend who works with hearing aids suggested that I drink Welch's Concord Grape Juice. I must say, as crazy as it might sound, I feel MUCH better. My balance has almost returned to my normal state. The "wonky" head feeling doesn't come as frequent. Has anyone else heard this?

I've never heard of this.  What's in the grape juice that's supposed to help with the balance?

Jan

[RichB57]

Well, I haven't heard of it, but I love grape juice, so I don't mind trying it. 

[PaulW]

I like grape juice too, but it has the exact opposite effect on me, wonky head, dizzy, nausea
Could it be that I am using fermented grape juice and you are using unfermented?