Does Anyone Have These Strange Sensations

[Carrol]

I am started to get this burning sensation in my face on the AN side and my eye feels real gritty. Sometimes when I am sitting rea ding in the evening I get a heaviness in my chest and my breathing is slightly laboured. I wonder if this could be related to the AN or is it probably something else.  I think I have started attributing everything to this tumor. I am still waiting to see a neurosurgeon at Sunnybrook in Toronto. It has been nearly six weeks and I don't have an appointment booked yet. They assured me they would call this week with an appointment date. I didn't hear anything so I phoned. The woman who books the appointments isn't in on Fridays. This is the third time I have called. Two weeks ago she was on holidays and I had to wait till she returned. Maybe I am suppose to be learning patience!

Carrol

[jerseygirl]

Hi, Carol,

Burning sensation in the face and eye dryness could very well be AN related. The former is damage to the trigeminal nerve and the latter is damage to the facial nerve. It is strange that at this size of the tumor you are having these symptoms.  Usually they occur after surgery. As far as labored breathing and chest heaviness are concerned, they could be AN related only if you had a huge tumor. So, I think they need to be checked out by a doctor to make sure it is not heart and lung related which could be very serious. Hope you don't experience any new symptoms and these ones are transient.

             Eve

[sues1953]

I can certainly relate to waiting for Doctors to call  .  I'm thinking your breathing symptom could be anxiety.  I feel like someone is sitting on my chest at times.

Best Wishes

Sue in Michigan

[Carrol]

Thanks for the imput. Maybe I am stresssed waiting so long for an appointment. It has been over five weeks waiting to hear from the Dr. They finally called today to book my appointment with Dr. Nedlinski at Sunnybrook. The waiting is so hard. I don't have any idea whether he will recommend surgery or just tell me to leave it and wait. It's only 2.0 cm so it sounds pretty small compared to what some people have had. I can'e imagine just leaving it so it's driving me nuts waiting to hear what he has to say. Once I know I think it will be easier to deal with.


Carrol

[mk]

Dry eye is certainly a trigeminal nerve symptom. It is not related to the absence of tears, which happens when the facial nerve is damaged. You can still produce tears, but the problem is reduced sensation of the cornea, which does not send the proper signals for tear production. The way to deal with this is by using eye drops as frequently as needed - you don't want to wait too long, because by the time you feel the dryness and "grittiness", your eye is already too dry. Try Refresh Celluvisc, which is preservative free (but expensive) once or twice a day, combined with Genteal or Systane. Warm compresses also help stimulate tear production. This symptom is  annoying but manageable.

I haven't heard about Dr. Nedlinski, maybe others will chime in, but make sure to ask for more than one consults. I doubt that at 2 cms they will recommend W&W indefinitely. Since you have trigeminal nerve issues, this means that already your AN has reached the root of the nerve close to the brainstem. They might recommend getting another MRI at 6 months to establish a growth pattern.

Marianna

[ombrerose4]

The chest pain and shortness of breath definitely sounds like it could be anxiety. I get symptoms like that when I am overwhelmed, nervous and stressed, which is probably how you are feeling right now. If you have a family doctor you should get it checked out to be on the safe side, but most likely it is due to the stress of thinking about your AN and having many concerns and questions. Hopefully once you see the doctor and get more information, the anxiety will lessen.