Symptoms ?

[Kit W]

I put the question mark in the subject because how do you spot the early symptoms? Are they different for each individual that has an AN?

As I said in my last post I would try and give an account of my symptoms over the years. I shall attempt not to bore you all but there are some things that at first may not seem relevant but I feel need to be told.

My wife Kay was born in Atlanta. I was born in Birmingham England. I came out here to see Kay in February 2007 for 5 days including Valentine's Day. Kay then went over to England to spend a week with me there before we flew back together for me to spend two weeks here. Well I never did get that return flight. We married on the 29th September 2007. We then went through the immigration process for me to be able to stay here legally.

I lost the upper range of the hearing in my right ear due to the sudden loud noise of the first round I fired from a high powered rifle at the age of 16. My twin brother and I had decided to join the junior Army straight from school. My hearing remained the same right up until about August this year when I suddenly lost most of the hearing in my right ear.

I became aware that the right side of my face was becoming numb to the touch and put it down to deep nerve damage caused by a severe beating I'd received during my time in the army. The numbness continued to get worse as time went by.

Whilest I was still living in England in 2003, if I've remembered the correct year,I had virtigo and was given Antivert tablets for the dizzyness. I woke up at 7 a.m one morning feeling fine. I decided to have another half an hour before finally surfacing. Well I opened my eyes only to see the room whistling past my eyes doing about 90 mph I'd guess. My Dr told me that I had an inner ear infection in the form of a virus that was going around. I was never sent for a CT/CAT scan. From this time I had always felt some degree of dizzyness. Some days being worse than others.

Do bear in mind that the UK health care system is called the National Health System that was set up by a Labour Government back in 1949 ostensibly to provide free health care to the masses. That system is now in serious debt and top heavy with managers. Consequently there are waiting list of up to two years for operations, MRI scans, CT/CAT scans and a wide range of other treatments.

I became aware of a change in how things tasted and put it down to my cooking skills but then after I came out here in July 2007 I became aware of how badly food tasted. bear in mind we were eating out a lot. I put it down to the waqy the food was prepared and cooked but then I began to notice a horrible taste in my mouth all the time and this taste got worse as time went on.

By now I had started vomiting about once a day. This eventually progressed to two or three times a day about four hours after each meal.

I still had all four of my wisdom teeth and thought the taste was coming from one of them turning bad, So I went to have them checked out and sure enough one of them was causing a problem. So I decided to have all four out at the same time and save myself the trouble of repeat extractions. I had them removed back in June of this year. Well the bad taste went away for about a week and came back exactly the same as it was before.

I went to see my regular Dr who refered me to a GI Dr. So I went through an upper endoscope only to find out there was nothing wrong with my intestines. But I was still dizzy which was getting worse and vomiting. despite medication.

I had become very weak by now and the night I had my seizure my wife had had to help me to the bathroom.

I used tgo weigh 182 lbs. At the end of my second week in hospital I had dropped to 132 lbs. During my third week in hospital I put on 18 lbs bringing me up to 150 lbs. I now weigh 170 lbs and still climbing.

I hope that this story helps others to spot the potential symptoms early.

Kit

[leapyrtwins]

IMO you don't always spot the early symptoms.  Since most ANs are slow growing, it can be years before they grow enough to "cause trouble".

Not all of us experience the same symptoms prior to diagnosis so I think that just makes things harder.

In my case, I noticed fullness and diminished hearing in my ear.  I finally had it checked out about 3 months later and my MRI showed an AN of 1.5 cm 

I don't think my AN grew to be 1.5 cm overnight, but up until the fullness and diminished hearing I had absolutely no indication that I had an AN.

So either I had no early symptoms, or they weren't big enough for me to recognize them.

Jan



 

[suboo73]

Kit,   Thank you for sharing your story with all of us going down the same road...  I went twice to local ENTs over the last 12 years and the docs told me i was losing my hearing - just accept it, as i was getting 'older.' (I am currently 52 years old.)

Anyway - i am SO GLAD you finally had the treatment you needed.  You are very, very brave and i thank you, again, for sharing your story!

PS - I would not be here, if it were not for my older SISTER, diagnosed 6 months ago.  After her diagnosis, i took it upon myself to go get another opinion (at a major medical center) and the doctor agreed to ordering an MRI.  (Did he think i was crazy? I don't for sure, but i don't think so.)  Anyway - if your story helps one person decide to seek another opinion, then i think that would be the most wonderful thing ever!

My best to you in your recovery. 

Sincerely,
Suboo

[suboo73]

CW,  Hi there.  Yes, it is true - my sister was diagnosed with an AN 6 months ago.  If she had NOT been diagnosed, i can't imagine how much longer i would have waited before going to another doctor.  It all seems very surreal sometimes - and we wonder why two sisters?  But, there is no scientific explanation at this point.

Thank you for so much for asking!

I hope you are doing well today.

SuBoo
Virginia

[wendysig]

Hi Kit,
Thanks for sharing your story.  Every time I read an account like yours I thank God for my wonderful doctors.  Looking back, I probably have had balance problems for most of my life, so until recently, my AN was probably very slow growing.  My doc says there is no way to know when it first reared it's ugly head, but I suspect iti appeared during my childhood and just never grew very much until the past year or so, when I noticed my balance prolems getting worse.  I chalked that up to my age, I am 55.  Last March I had a sudden hearing loss accompanied by a feeling of fullnes in my ear.  I have always had a problem with ear wax and assumed that was what it was, so off to the doctor I went to get it flushed out.  He told me I had an ear infection and prescribed antibiotic drops.  I had been using over the counter ear drops for a couple of weeks and suspect I caused the infection myself.  When I went back he told me I had a dull eardrum and needed to see an ENT.  The ENT suspected sensorineural hearing loss and  arranged for me to  have an audiogram and auditory brainstem response test (ABR).  The audio showed a 20% loss in speech discrimination and the ABR was very abnormal so he sent me for an MRI, which in turn showed my brain booger and here I am.  From the first time I saw the doctor about my "ear wax" to disagnosis was about a month.  I was obviously very lucky to have two such wonderful doctors.   I wish everyone was as fortunate as I was in getting a quick and accurate diagnosiis.

Wendy

[Kathy M]

Hi Kit,

I was just diagnosed with a 3+ cm AN and it has taken a good while to get that large I guess.  Looking back, I stopped taking walks with my husband at night about 5 years ago, because I was unsteady on my feet.  I mentioned it to my doctor and he said that was "tricky" and not to worry.  I noticed that more and more people were mumbling and that I had a hard time hearing people on the phone, but attributed it to driving (I have an hour commute each way to work) with the radio up loud and being a musician for 35 years.  I started feeling wobbly and not able to walk a straight line, but again, by doctor wasn't concerned.  Finally, on 9/28/08, I was REALLY dizzy and knew something was wrong.  I think about how things might be different if I had insisted that I wasn't right about 4 years ago, but I know that doesnt help with anything.

Good luck to you!!!  I am still waiting to see a few neurosurgeons and am so nervous and scared.  It really helps to be surrounded by such wonderful people here.

Kathy