pre-treatment symptoms increasing...I think

[Karla83401]

Hi Everyone,

Thank you for being such a safety net for me! My children have been driving me crazy with concern and their reaction to the news of my AN. They are all so scared about how fast it appears to be growing and the fact that I want to wait to get into the House, which will take a couple of months. To say the least I have been overwhelmed, and as a result I often simply withdraw until I feel strong enought to deal with everything again. I think it is called survival mode.

Anyways now to the real topic of this post. I have had these "issues" prior to finding out about the tumor but they seem to be increasing. In the past I have blamed them on stress and now I really wonder. So here goes...at times I feel like my sinuses are so full that they are going to explode. I don't have any real "congestion" that I am aware of, it just feels like they are so full it hurts. My head hurts when this is going on and lights are uncomfortable. I also feel somewhat sick at my stomach, reminds me of being pregnant (NO! I am not pregnant, I have been a widow for 20 months now so unless I am a medical oddity the answer is no way). But the worst is an "electrical storm" in my head. I have struggled with this for about three years now and it is like I hear electrical shortages in my head. I feel like I could pass out during these and the best thing to do is to lay down.

So, could all of this be related to my tumor, is it really just from stress, or do you think that it is a whole new can of worms going on in my head? Any ideas would be appreciated.

Thanks again for all of the love and support from such a great group of "strangers" who have become a new family.


Karla

Could

[Battyp]

Karla I can only speak for myself and I think we all have had different symptoms.

From the time my ears started with the tinitus I felt stuffy.  Of course this was blamed on allergies and I did allergy medicine (some minor relief but not lasting). I also had what I classified as headaches or migraines and literally ate excedrin migraine meds and zomig like candy.  I'd panic if I'd leave the house and not have a stash on me.  Again I'd get some relieft but not completely just enough to get through my day and collapse.  Within the 6 mos after my syptoms started I got to wear all I wanted to do was sleep and pop zomig as my head hurt so bad.  I also got vertigo when turning my head especially while driving...constant nauseated feeling and I never did have morning sickness when I was pregnant  lol  I was treated with Decadron (yucky stuff! but I credit it for saving my life) for the pressure in my head.  After a few days on the med I felt so good it was hard to believe I had a brain tumor. 

Have you called your diagnosising doctor and asked about your symptoms?  They might be able to offer you some relieft or at least some insight on what might give you relief.

[Karla83401]

Hi Batty,

I have not heard of any of the medications you took. I have not told my doctor about the "issues" since I was diagnosised. I spoke to drs in the past about them and was always told that I just needed to reduce the stress in my life and rest. After being brushed off in the past I guess I have just stopped asking. I did call the dr yesterday and am waiting for a call back. I don't think that I would be so concerned about them if yesterdays episode had not been so bad. I ended up staying in bed until after three in the afternoon. When I did feel well enought to get up and move around I was still really shaky and weak.

Thanks for your ideas and I will let you know if I hear anything from the doctor and I am going to ask about the meds you used.

Karla

[lthompson]

Hi, I can totally relate to your symptoms.  I have been feeling constantly "stuffy" for ears, even before my diagnosis a few years ago.  My ENT and GP said it is due to allergies and not related to my AN.  In addition, right after I gave birth to my twin girls 8 years ago, I started with what I thought was migraine headaches, the pain was right above my eyes (similar to sinus headaches) but alot worse, sensitivity to light and nausea to the point that I would sometimes vomit with them.  THey came and go for approximately two years after given birth and then disappeared for a while.  Now they are back and becoming more frequent.  Dr. Roland, who I see for my AN in NYC said that because of my tumor size (approximately 8 mm) that he does not believe the headaches and the sinus (stuffiness) issues are related to my AN.  I tend to differ with his opinion because I am reading more and more about people with an AN that have these symptoms.

[ppearl214]

Hi all,

I've had the "stuffies" as well and been blaming them on New England winter allergies (dry environments, etc). I have found my tinnitus to be a bit louder but when asked by the audiologist last week about it and how long it's been louder, I think I actually said "since my AN diagnosis".... so, I know stresses are enhancing some of my symptoms.

lthompson, like you, my dr's don't feel my headaches or right side facial numbness are due to the AN (my AN is left sided) but heck, I have no clue either.

[Karla83401]

Hi Everyone,

It is so good to know that other people have had these same type of symptoms (I hate using the word symptom because who knows what they really mean). It has gotten to the point with these "electrical stroms" in my head that sometimes I wonder if I am going crazy. I have had them for awhile now but they seem to be increasing in intensity recently. I feel so weak and shaky when I finally get past them, I even have chilling and sweats afterwards.

I must admit that I worry because from what I understand it is rather uncommon for an AN to grow from a "tiny spec" (they thought that it was perhaps a shadow or small abnormality on the cord) to 4x8x6mm in the canal/bony area and 1.4x1.1x1.1cm in the brain area in 29 months. With my crazy luck it will be the "size of a grapefruit" (stolen from the "stupidest things people say" thread) by the time I have my surgery in May. I am assuming that surgery will be the way for me to go....that is what the neurosurgeon here said. My COBRA insurance expires in about 15 months so I want to get it completely taken care of by then.

Thanks again for all the input....if I am crazy I sure am in good company.

Karla

[ppearl214]

Karla, we're not crazy.. it's only a personna we play on tv....shhhhhhh

[Captain Deb]

Karla,
If you do the surgery route, I am sure you know to find a surgeon that has had lots of experience with ANs--like someone who has ressected hundreds of them, not just a few a year, if possible.  Everyone on this forum will tell you the same thing.  Also how much research have you done on radiosurgery?  Seems more and more of us with smaller tumors have chosen that route, even in the 3 years since I had my surgery.   

Seems to be so insane that the medical community is so divided about the best course of treatment for small ANs (less that 2cm.)

Captain Deb

[Karla83401]

Hey Captain Deb,

I am planning on having my surgery at the House in L.A. I have not done very much research into the different types of surgery as I am hoping to learn more from the House. I am totally confused about the actual size of my tumor. The MRI report stated that it was "moderately large" and the report gave two measurements. The first one was 4x8x6mm and the second was 1.4x1.1x1.1cm. The neurosurgeon told my daughter and I that it was a smaller tumor than he thought. I asked how the mass of the tumor was figured and he simply rushed me out. I then contacted the radiologist and asked him what qualified as a large AN tumor. He told me that it was the mass and that mine was large. I asked him the formula for figuring the mass and he said the just punch the numbers in to a computor program and that gives them the size. So now I sit and wonder what size is my tumor?

The one thing that they both agreed on was that it is growing a fairly rapid pace and that it needs to come out soon. The doctors in this small town only do maybe 1 or 2 a year (and then only on old men when it does not matter if they loss facial control...drs words not mine) so they want me to go to the House.

These are the reasons that I am searching for answers and waiting to hear from the House. I do worry about some of the information that you get on the net but this site seems to the most creditable site that I came across. I also feel that nobody really knows a situation until they have walked or are walking it, therefore these is much strength and knowledge in a group of people facing the same situation.

Thanks for letting me ramble today....I should be studing for a statistics test but I just don't seem to be absorbing much.

Karla

[HeadCase2]

Karla,
   Being diagnosed with an AN is stressful, and stress can exacerbate things.  I found that as the surgery date approached, my stress levels increased-- it was easy to start attributing all kinds of things to the AN.
   If you haven't mentioned these symptoms to a neurologist, you should.  Some of it sounds like precursors to migrain headaches.  I'm no doctor, so please get it checked out, it may help lessen you concerns and stress level.  And theyt may be able to help.
Regards,
 Rob

[Captain Deb]

Karla--have your MRI's been sent to House yet?  Once they get them you can talk directly to a surgeon--they are very good about talking directly to patients.  Whopping diffence betwee that 4mm and the 1.5 cm (1cm=10mm) Sounds like a medium-sized tumor to me, but I ain't no doc.  Suggest you do a little research on radiosurgery as well! My small-town doc ENT didn't even MENTION radiosurgery to me when I was diagnosed.
Capt Deb

[Karla83401]

Hey Captain,

The first measurement was the part of the tumor in the bony area and the second measurement is the part pushing on the brain. I quess this is why they say these tumors are pear shaped. It is also why I have struggled to find out how most everyone else has a single measurement. I feel kind of picked on!

The neurosurgeon here has sent the MRIs to the House and I am just waiting to hear from them. I am also traveling to Missoula Montana to meet with a doctor there who is supposed to do several AN surgeries a month. Missoula would be so much closer for me but then I want the best chance at a good outcome.

In the meanwhile I just keep having these darn "electrical storms" in my head that leave me so darn weak.

Ahhh, such are with issues of those with tumors,

Karla

[smcrary]

Wow.  I wondered if the pressure I feel in my ear and head increased since I was told that I needed an MRI.  I am now waiting for the results.
I went to the ENT thinking I had a sinus problem.  I have had sinus problems for years and went once complaining about feeling like there was water in my ear all the time.  At that time, there was no hearing loss and I was told  that whatever was wrong didn't effect my hearing.  That was 8 years ago.  I figured this time maybe they could fix my sinuses, but found I had an asymmetric hearing loss and probably an A.N.  Ever since the pressure in my head feels intolerable and the little dizzy spells I have had for a while scare the hell out of me.  I know the anxiety has made it worse.  Staying calm is important.  How old are your kids.  Can they understand that A. N.'s tend to be very slow growing and treatable.  I am telling myself that as often as I have I need to to get through this.  I was also widowed in 2000.  My late husband died of a brain tumor, but it was an anaplastic astrocytoma.
So it would be easy to panic.  It will help the kids to know you are calm, fake it...  Until there is a game plan that is all any of us can do to contain the damage.  I don't know if that helps, but you are not alone.

[Karla83401]

Hi smcrary,

It is funny how some of the things that I wrote off as stress related now make more sense knowing that this thing is growing. I have two children still at home that are age 12 and 17 years old. I have four other children ages 24, 26, 28 and 30. Then I am also raising a two year old granddaughter as our oldest daughter from my husband's first marriage is a drug addict in prison. That is a separate heartbreak in and of its self. All of the other children are great kids that are productive members of society, so it is so hard to understand what has prompted her to travel this path in life.

My children do understand that normally these types of tumors grow slowly (although I do not appear to be so lucky) and they also understand that I believe that things will be just fine in the end. What scares them the most is that the doctors told all of us (the children were even there) that my husband was going to be just fine and that the other doctors were wrong about how sick he was. Then he suddenly died six days later.

It always makes me sad to hear that somebody else has lost their spouse. I am sorry that you have suffered that loss also. In spite of what the media tells us I do believe that most marriages are partnerships of love.

I will have you in my thoughts and prayers as you await the results of your MRI.

Karla

[Battyp]

Karla I think you and me and smcrazy can start our own AN widower support group.  It's so sad but we can relate to each other like no one else can!