Post CK Issues of Facial Nerve Neuroma

[talha]

Hi,  I have been diagnosed with facial nerve neuroma on the Right side,  almost of 11x11x7mm this January. I was recommended for Cyber knife treatment by all my doctors.
On April 26 my 5 fractional CK treatment has been completed. I had problem will closing my right eye, I had facial twitching, bad taste on the tongue and dry eye on the effected side before treatment. During treatment I felt as symptoms are weakening up, and I can feel a lightness on my face but After a week of treatment I started feeling of facial issues again and in fact I felt them with severity. Now closing the eye was almost impossible, my taste buds are crazy nowadays, having a foul taste on the front of the tongue all the time. Tinnitus had become worse than ever and   also   feeling   heaviness.

My doctor has told me that things would be like this due to post treatment swellings.

What I am asking, firstly, you people here is whether change in taste buds happens after treatment? I am also having gaps in my gums after treatment! I am having greasy buccal cavity after   treatment.

The biggest concern that I have is the quality of life, I fear how would I be able to drive now as I feel difficult to close the eye properly. I feel air in the eye as it dry’s quickly. 

Secondly, this dizziness, heavy headiness! Although I feel that if I take a nap in the day than dizziness reduces but I am a lecturer, I need to deliver lectures and with this dizziness it may be difficult. But then I answer to my self, be strong I will able to manage it insha Allah. I will do it with the help of God.

Plz share your views

[ANSydney]

I haven't had treatment so can't speak from experience. I hear that there can be post treatment swelling. Can't remember how long it take to subside, but 6 months is what comes to mind.

I certainly hope things get better. Speak to your treatment provider as steroids can temporarily relieve swelling.

Keep us informed.

[Gtmochi]

Hi Talha,

I had CK also, but instead of 5 fractional treatments, I had 3.

Every patient is different, but what my doctors told me was that during the 6-18 months after treatment, one can have an increase in symptoms.  However, some do have an increase in symptoms during the first 6 months - I was one of those people! About 3 months in, I had an increase of strange face feelings - which included a hot/cold sensation, or strange tingling. But, by my 6th month, things had begun to subside.
This spike in symptoms seems to be par for the course with CK. However they are certainly also things about which you should notify your doctor. I checked in with mine whenever things got a little weird - just to make sure they were normal within the context of post-CK. Plus, as ANSydney said, your doctor may be able to help you to address these issues through medication.

Wishing you healing!

Jessica

[talha]

Thanks Ann and Jessica for valuable response.
I have meet my doctor today, he said after treatment there appears swelling on the nerve and due to which one may feel increase in symptoms. He has prescribed steroid, low dose, but I side to doctor I don't want to take steroids as I have read steroids have side effects  on the body.
For the last one week I feel some relieve in symptoms, my tinnitus was became weaker and have better eye movement but for the last two days I am having some increase in symptoms again as my lip droops a bit and tinnitus is a bit more comparatively.
I wanted to ask you people whether this happens that some days one feel relief in symptoms and someday a one feel increase in symptoms again!

Many thanks,
Talha

[jami]

Hi Talha,

I had CK about a month ago, as well as surgery last august.

I have had taste bud issues all along, and they changed after CK. From general numbness to actual taste. Sometimes all I taste on that side is salty salty salty.
It is not consistent, as well. I will have facial numbness, eye twitches or headaches and then they stop for a few days.  That said, its getting less frequent and I am optimistic that it will continue to do so.

Dizziness is minor, but I did have my balance nerve removed (or cut?) during the surgery so I had 9 months to compensate, and that has gone very well for me.

Agree with the feedback from Jessica and ANSydney – don’t be afraid to check in with your doctor and glad to hear you did.

Hang in there!  I still struggle at times with how my life has changed due to this, but always remind myself it could be worse. RE: work, I lead a large global team and travel a LOT, plus will be on the phone working with India or China until the wee hours of the morning. That has been the toughest part, and I have to know my limits. I rest when the tinnitus gets louder or head hurts, go in the office later if I have late calls.
Hi Talha,

I had CK about a month ago, as well as surgery last august.

I have had taste bud issues all along, and they changed after CK. From general numbness to how things taste. Sometimes all I taste on that side is salty salty salty.

It is not consistent, as well. I will have facial numbness, eye twitches or headaches and then they stop for a few days.  That said, its getting less frequent and I am optimistic that it will continue to do so.

Dizziness is minor, but I did have my balance nerve removed (or cut?) during the surgery so I had 9 months to compensate, and that has gone very well for me.

Agree with the feedback from Jessica and ANSydney – don’t be afraid to check in with your doctor and glad to hear you did.

Hang in there!  I still struggle at times with how my life has changed due to this, but always remind myself it could be worse. RE: work, I lead a large global team and travel a LOT, plus will be on the phone working with India or China until the wee hours of the morning. That has been the toughest part, and I have to know my limits. I rest when the tinnitus gets louder or head hurts, go in the office later if I have late calls.

Jami

[talha]

Thanks Jami for the reply.

What bothering me now is that I also have facial twitching on the opposite side of my neuroma although very minute. Almost twice I felt. In addition I have twitching on different body parts as well, sometimes on leg, on arms.
My tinnitus and heavy headedness got better but for last one week its again have severity. Plus I fell pressure on my temple region on my neuroma side. Dizziness is there as well. Palsy got better but from one week its again there, especially on eye and lip. Facial numbness on the whole face. Sometimes on the jaw line I feel dull pain.
I have talked to my doctor, he advised me steroids again but I don't want to go on steroids again as I got stomach problem with it.
I am ready to hang on with it and waiting that things will get better Insha Allah.

Need advise