Exhaustion...among other symptoms

[rebeccadill32]

Is anyone else fighting exhaustion? I have an AN that is 1.8 x 2.5 and am riding the watch and wait train for as long as I can but the dizziness has gotten much worse.  I am lucky I have not had any falls at this point.  The facial pain is almost constant and is starting to affect the right side of my tongue.  When I ask my doctor if being tired is a symptom I am told that it is hard to say whether it is AN related or due to something else but I am sleeping at night, my blood work is all normal, the exhaustion did not start until the dizziness got worse.  It just seems like it would have to be related.  Just curious if others have the same problem.

[Patti]

I'm surprised you are still watching and waiting with your unpleasant symptoms! 

[rebeccadill32]

Hi Patti,

Even with the increase of symptoms my hearing is still pretty good.  Knowing that having this surgery will leave me with no hearing on my AN side while having a very active 6 year old at home leaves me fighting just a little longer to keep the hearing I have while I can.  But I will admit, the symptoms are making it harder and harder.

[alabamajane]

Sorry to hear your symptoms are worsening. Like Patti I am surprised you are still hesitant. I was w&w for almost 3 yrs before my symptoms got to the point I could not bear it. And, yes, in my opinion,, the fatigue is very much a part of this. ( not to mention a 6 year old too  ).

Your brain is working exra hard to keep you upright with a compromised vestibular system. Did the doctor suggest translab surgery? I am supposing he did since you are sure you will lose hearing. I am SSD and it's not really that bad and you can look into a BAHA system if you'd like after surgery.

It's a lot to deal with especially with a young child. But in my opinion, if you are having increased facial pain and symptoms,, you may want to reconsider w&w much longer,,, it may mean the facial nerve is getting more involved. Just my 2 cents,,,

Good luck to you,,, we all know how hard this part of the journey is,,

[ANSydney]

rebecca, how long have you had your symptoms? Which symptoms are getting worse?

From what I can gather your hearing is still good, there is dizziness and facial pain. The facial pain I would have though is trigeminal neuropathy, since the facial nerve is sensory for ear and tympanic membrane and taste (not pain) for the front two-thirds of the tongue (it's more for facial muscle control). Your facial pain appears to be more widespread than just the ears. Is this correct?

I agree with Jane that your brain is working extra hard to keep you upright with a compromises vestibular system which could result in extra exhaustion.

It would be good to double check that your exhaustion is not due to another reason, just to be sure.

The problem with single sided hearing is that you loose all directionality for sound. You hear the sound, you just don't know where it is coming from. So when someone says "over here" they might as well have said nothing.

I see you've got your next MRI due this month. That will be a good piece of information to have. It would be good to hear what the professional opinion about your symptoms and best course of action is. Dr Tamargo sounds great. Keep us posted.

[rebeccadill32]

Thank you for the responses.  They are helpful and give me food for thought too. 

To answer a couple of the questions, yes, I did have my MRI last month and I am fortunate that the tumor did not grow but the symptoms have been getting worse since about January.  Mainly the dizziness and the facial pain.  The facial pain radiates from my ear to my jaw into the right side of my tongue.  I have right sided headaches and occasionally have pain behind my ear.  I have noticed some worsening in my hearing.  I am starting to have a little difficulty on the phone on that ear but it is still very good considering the size of my tumor.   

According to the MRI report it says there is "very mild associated mass effect on the right middle cerebellar peduncle and along the root entry zone of the trigeminal nerve".   I met with Dr. Tamargo on March 20th.  He is absolutely wonderful and I feel very at ease in his care.  At my first appointment with him last September he said that I would need surgery someday but his recommendation to me was to watch and wait.  At this appointment in March he stated that at this point with my symptoms worsening I am now a candidate for the surgery and he would understand if I was ready to get the surgery at this point.  I asked if it was reasonable to still wait another 6 months since my hearing was still decent and I haven't had any falls and he said that was reasonable and we will do a repeat MRI in 6 months and re-evaluate then but if anything changes to call.

I meant to ask him why symptoms get worse if the tumor doesn't grow but it was one of those things where I left and thought of the questions then. 

As for the exhaustion, I believe I should be due for another physical with my PCP soon so I will look into that with her. 

Patti,  I am very new to all of this and am not completely up on what SSD or the BAHA system is.  Would you mind explaining that to me?

Sorry for the lengthy post.  I appreciate the support and the input more than you know.

[Patti]

I can tell you about SSD.  It stands for single-sided deafness.  It takes some getting used to but for me it is the least problem of them all.  I can see it being more of a problem for a mom of a 6 year old. but your symptoms and exhaustion are far worse in my opinion.  Someone else can tell you about BAHA.  I am not interested it it.  I know of an AN person from years ago.  She would not tell anyone she had SSD and therefore limited her social interactions.  I tell strangers on a plane about mine, direct all the seating at dinner parties, dealing with it openly and even jokingly.  No one minds. 

[djsunshine21]

I'm definitely in the same boat with exhaustion! And I know it must be related to finally losing that balance nerve. I've been so fortunate that up til recently I've done great with balance, but either it is just starting to happen or (and more likely) it is at a place where it is growing quickly. It went from 1.7x1.6 to 3x2.3 cm in 18 months. That feeling of having to concentrate on balance is a frustrating one for sure, and I think that's why I'm so tired all the time. I have two children under the age of 9, and I hate having to lie down so much, but if I do rest for a little while I find that I do better again when I get up.

Patti, did you find that sense of exhaustion goes away after surgery and the appropriate amount of vestibular therapy?

[Patti]

Honestly, it took many years, but some of that could have been because of the stress of raising 2 teen-aged girls. I remember the feeling (after my initial 6 weeks in the hospital and re-hab) of getting exhausted from the simplest tasks.  So i learned to lay down or recline for a bit after each tiring event.  It got easier as the years went on.  I pushed myself to do yoga and go for walks.  Now i do a boot-camp class.  I still get tired but I am more accepting of the tiredness and have no qualms about putting my feet up when i have to.  I wish I had better news for you.  I am very active but still get tired.

[alabamajane]

I agree with Patti about SSD, it's more of a nuisance than a problem. Yes you do lose directionality and it's hard to figure out where sound is coming from most of the time if it's from behind you. But not that troublesome,, agree it may be more so with a young child.

The BAHA device is made by Cochlear and Oticon Medical. Both are similar but not interchangeable. It stands for bone anchored hearing assist (device),, it is basically a small processor that attaches to a titanium post that is implanted in the bone behind deaf ear. Relatively simple procedure often done in the Dr office or as out patient. I have had mine a little over 2 years. It helps you hear from the deaf side by the processor transferring the sound through the post into the bone and then it transfers to your good ear to actually be heard on that side, , too involved??  ,,, that's the concept anyway,,,

It's may be worth looking into if you become SSD ,, some people live quite happily with SSD. I did for 3 years. You can "try" the processor on a headband generally at most offices that deal with them. It's not the exact same as having one,, but you get the idea.

Hope this has not been too long and boring but wanted to answer some questions you had,,,

[ANSydney]

I meant to ask him why symptoms get worse if the tumor doesn't grow but it was one of those things where I left and thought of the questions then. 

To answer your questions, yes, things can get worse even in the absence of tumor growth. They can also stay the same. Howeverver, the more growth the more likely is symptom progression.

As Jane has said, if you have SSD, when someone calls out "over here" if you don't see them in front of you, then they're likely to be behind you. However, if there are in a room in the house, and therefore our of sight, you will not be able to tell the directions. Also, if your mobile phone rings, you will not be able to tell where it is. A BAHA does not give you hearing directionality (but it will avoid the sound shadow you get in your SSD side when someone is talking).

For trigeminal neuralgia, you may want to reach out to sharanov.

[gary.s]

I get tired after doing something strenuous. A short nap really helps get my energy back. On a good day with mild headaches and very little dizziness, I am good for about 2-3 hours of activity. Then it is time to rest.

My right sided tumor is 1.6 x 1.2 cm and I am also watch and wait. The right side of my tongue is numb/tingles, and I have pain behind my right ear from the blocked ear pressure. At times the pain seems to go along the side of my face. This pain comes and goes from day to day. 

Seems like from reading the posts some of these symptoms are shared by a lot of us.

[rebeccadill32]

Thank you so much everyone! I am extremely grateful for everyone's responses. You have no idea how much you have helped me. This journey can be a very scary one so it is so nice to have this resource to turn to for help and reassurance from others that are on the same path.

[ReginaE]

Is anyone else fighting exhaustion? I have an AN that is 1.8 x 2.5 and am riding the watch and wait train for as long as I can but the dizziness has gotten much worse.  I am lucky I have not had any falls at this point.  The facial pain is almost constant and is starting to affect the right side of my tongue.  When I ask my doctor if being tired is a symptom I am told that it is hard to say whether it is AN related or due to something else but I am sleeping at night, my blood work is all normal, the exhaustion did not start until the dizziness got worse.  It just seems like it would have to be related.  Just curious if others have the same problem.

I too am fighting exhaustion.  My AN is currently 9.4 x 5.7 x 5.0mm or 1 CM and in watch and wait as well.    I have to take a nap everyday after work.  I am doing therapy for my dizziness as I had a VNG test and doctors think that my crystals are out of line and gave me some exercises to get them back in line.  So far, I am still dizzy.   I was not tired until this AN appeared.  My doctor has tested me for everything and the dizziness is not coming from any other source.