Newbie

[peggy43]

Hi I am new to the forum and have found myself here as my GP says its possible I may have AN and has referred me to an ENT specialist. I don't have an appointment until July so have been doing some digging on the net for info. I am worried about my symptoms and wanted to ask if any of them sound familiar to any of you.
Here's my story so far in 2005 I was given an MRI due to hearing loss, tinitus and blocked feeling in my right ear, it came back clear.
For the past couple of years in my right ear again the tinitus has returned, my hearing feels like I am hearing through water and my ear feels blocked.
In january I started with what was diagnosed as Labrynthitis, sickness, disorientated, mild dizziness, severe headache particularly on waking up, really bad tinitus, slight deafness and a thick feeling in my right ear. I was given medication and after about a month it seemed to clear up. Then in february I had the same symptoms again, this time they were slightly milder. I had treatment for Labrynthitis again but this time the medication didnt make a difference and I have not really recovered. I still have poor hearing, tinitus, feel off balance, feel travel sick even when not travelling, have a dull headache all the time and I have also now developed a strange tingling feeling inside my right ear.  I am a bit worried that if I do have a AN July is a long time to wait to see ENT. I am kind of hoping someone will say my symptoms are nothing like AN, can anyone put my mind at rest please?

[MDemisay]

Dear Peggie,

Welcome to the ANA Forum! There is a lot of information here, so ask a lot of questions and don't be satisfied with one particular answer. We are all in some stage of treatment ,this is a support group, in my considered opinion, among one of the very best!

The question you appeared to ask is July to long to wait for an appointment with an ENT......the answer is yes it is particularly if you have felt these symptoms for a long time!

The route I would follow in your particular case is, if the ENT specialist is not giving you a timely appointment (in a week or 2) to go back to my GP and say what gives? He/she will hurry that ENT along or refer you elsewhere. Initial diagnosis gets the ball rolling!

Don't be afraid to "shake the health care tree" as we like to say.

Or the squeeky wheel gets the most grease!

Time is of the essence here! The smaller it is the more options for treatment you have, the longer you wait the less options you have.

Chime in please anyone!


Mike

[chloes mema]

Hi Peggy

Welcome to the forum.  Hopefully you do not have an AN but those are very similiar symptoms to what I had.  When you get to the ENT appointment, they should order an MRI for you.  Make sure that they order an MRI with and with out contrast.

I agree with Mike, you need to start being a "pushy" patient.  Believe me, I know and I've become a very "pushy" patient.  Shake that tree!!!!

Good luck, keep us posted.

Karen

[Jim Scott]

Hi, Peggy ~

As you know, we're not doctors and cannot 'diagnose' your condition but your symptoms do mimic AN symptoms.  However, many different conditions can cause these kinds of symptoms.  That's why doctors order an MRI scan - and why you need one now, not in July.

As Mike suggested, contact your PCP and ask him to either try and expedite your appointment with the ENT or refer you to someone else who isn't so busy.  It's imperative that you be proactive in these situations and not simply let doctors call all the shots, as it were.

My PCP ordered an MRI when I presented my symptoms to him.  That scan discovered my large AN.  I never saw an ENT but was referred to a neurosurgeon (my AN was too large for radiation).  The entire process took barely a week.  Doctors can be quite efficient when they chose to be.  We just have to help motivate them.

Jim

[CHD63]

Hi Peggy and welcome to this forum .....

The most accurate way to diagnose an AN is via an MRI with contrast.  Even though you had a clear MRI 7 years ago, it is possible for an AN to be large enough now to be seen, when it was not 7 years ago.

Your PCP can order an MRI of your head and I would strongly urge you to call your regular doctor and ask him/her to order the MRI with and without contrast (any general doctor can do that) now.  You have the right to know now, rather than waiting nearly three months for an answer.

As Jim said there are many other things that can cause your symptoms besides an AN so try to hang on to the thought that it could be something else.

My only presenting symptoms were sudden single-sided hearing loss and balance issues.  However, each of us can have very unique symptoms depending upon how our AN is/was growing.

Thoughts and prayers.

Clarice

[PaulW]

While your symptoms may mimic an AN, there are many other causes that are not tumour related.
An MRI with Contrast is the only way that a small AN can be detected.
You said that you had an MRI 7 years ago, it was therefor on an older machine, possibly without contrast, and it would have been hard to detect a small AN.
Fingers crossed that it isn't. And even if it is, there a lots of great doctors and treatment options available.
   

[lrobie]

Welcome to the forum!

I agree with Clarice, have your GP order the MRI.  I'm surprised it hasn't been done already with the symptoms that you are currently experiencing.  Sometimes you have to push.

Good luck!

Lisa

[peggy43]

Hi thankyou so much for your replies it really is a wonderful site! I will try and get my GP to get an earlier appointment with ENT I'm in Uk and I don't think out GP's can order MRI without specialist although I will ask. I wonder if I can ask one more question? I have  problem with my oesophagus function, it is very poor and I have problems swallowing. I am seeing a consultant for this problem but he does not know why my function is so poor. I read somewhere while I have been researching AN that it can occasionally effect swallowing and am wondering if this may be another symptom I have?
Thanks again for the fantastic support

[chloes mema]

When asking for the MRI with contrast, I'd also ask for a "thin cut" MRI.  This gives a better chance of finding the AN and gives a "truer" picture.  At least that's how it was described to me.

Karen

[CHD63]

Hi again, Peggy .....

Yes, your health system does dictate a different procedure for medical testing, but I still would be very aggressive in getting the needed tests as soon as you possibly can.

You may not have an AN, but all 12 cranial nerves originate at the brainstem and there are many possible conditions that could be affecting any of them ..... or none of them.  (Remember, I am not a doctor and you need a professional evaluation and opinion.)  See http://www.gwc.maricopa.edu/class/bio201/cn/cranial.htm for a diagram and description of the functions of cranial nerves.  An acoustic neuroma grows on the 8th (VIII) nerve, the hearing/balance nerve.

Best wishes and keep calling until you get an earlier appointment!

Clarice

[peggy43]

Thanks again. The link to diagram is very interesting I never realised how close all those nerves were so close together, no wonder AN causes so many symptoms. I rang the hospital today about the date of my appointment and apparently the consultant is reviewing my referal letter and will send an earlier appointment if he thinks its necessary. So I will have to wait and see what he decides.
x

[Crazycat]

What part of the country are you from Peggy?

[LakeErie]

Peggy, From my reading I can tell you that AN's can affect the throat muscles and larynx, particularly if cranial nerves numbers 9 ( glossopharyngeal ) and 10 ( vagus ) are involved with the tumor.
I can tell you from experience that a large tumor removal that involves the lower cranial nerves 9 and 10 can result in surgical complications affecting the voice and the ability to swallow, complications of my own surgery.
That said there are many reasons that cause swallowing problems, not just large AN's.
Hope this helps some. Good luck.

[MDemisay]

Peggy,

As I am not sure you are aware the health care system in the U.S. differs greatly with the healthcare system available in Great Britain. In Britain, for example, they make you jump through more hoops(translation:wait longer).Which is why I and others on this site are urging you to have somebody order an MRI. Again I must clarify do your research into doctors recommended by this site and send them each a copy of your MRI.

Take my grandmother's case for example, they were going to let her die of complications from aging in Scotland in 1994 (she was at the time 84) with minimal treatment! My sister got on her case and she was able to live 10 more years with us here in the States. -------10 more quality years!!!!

I do not think it is that bad with you but it does indicate that unless you the patient does something, then they are quite comfortable just to let you wait that's just the way it is with your system.

The point is you have to be proactive, you have to drive your care, if you are not satisfied go somewhere else, in the case of dealing with an AN time is critical some are extremely slow growing and some are rapid. In the U.S. you have much more available access to care precisely because it costs more money, in Great Britain salaries are lower.

Get someone to order tests, go for the tests, follow up on the tests (such as send the tests as soon as possible to the appropriate doctors (at least 3) and take notes as to their recommended treatment which maybe sent by mail (you should overnight it to each one) time is critical the longer you wait the more it grows.


Good luck and be vigilant and don't be satisfied with delaying tactics or callbacks.

 Followup next day!

Mike

[peggy43]

Hi Crazycat I am from Yorkshire  'oooop North' as we call it!
Hi Lake Erie thank you. I have been struggling with mysterious severe swallowing  problems for a couple of years the medics have not found an explanation for it yet I am awaiting an appointment for upper GI consultation.
Thanks also Mike our system is very different from yours, we don't have much of a say in who we see, although it is getting better. I had to fight for almost two  years to see a cough specialist as I had and still do have awful cough/chest problems. I have had a lot of problems with aspiration pneumonia which he atributes to my swallowing problems. Having read a lot of the info on this wonderful site I am really worried that I might have an AN, just hope I don't. I will hopefully hear from my GP Monday about an earlier appointment with ENT.