Recently Diagnosed and Frustrated

[knit78]

I just registered for this site today and am learning so many things from the forum. I'm hoping someone can give me some feedback on my own situation.

I live in Massachusetts. I've been dealing with a lot of vertigo, nausea, headaches, and fatigue for the last few months. In the last month everything has become substantially worse, particularly the vertigo. It seems to impare my daily functions. I finally had an MRI ordered by an ENT and on Friday he told me I have an acoustic neuroma. He said he would be referring me to Dr. Mason in Springfield. This morning I was told that the earliest he could get me in was October 18th, an entire month from now. I'm incredibly frustrated with my situation because my life has changed so drastically. I was a very active, healthy individual prior to this....running 20 miles a week, hiking, working full-time, etc. Now...my vertigo is so bad that running is fairly impossible and borderline dangergous. Driving myself anywhere seems unwise given my inability to see straight and focus on the road. I sleep - a lot. When I say a lot, I mean every free moment I have I just want to sleep. I'm so heavily fatigued. My vision is poor and I think that mostly stems from the vertigo. I have headaches. I feel very confused or fuzzy. My point? My point is that I feel like my life has been depreciated by about 90%. It's hard to function on a day to day basis and now I have to wait another month to see someone about treatment? Should I be patient and go along with this, or ask for another referral? Or should I start seeking out my own doctor? I don't want to be that nagging patient, but this has put me in an immense about depression. I want to get treatment sooner rather than later.

[LakeErie]

You will probably want several opinions anyway, so go ahead and find your own physicians. Mass General has a good reputation treating AN's so it would be a good starting point given where you are. See how long it takes to get an appointment with the AN teams there. Good luck

[MDemisay]

Dear knit78,

Just thinking you can get free consultations by mail if you (like I did) send your copies of your MRI reports and CD's to the House ear Institute  in LA (Dr. Friedman) and UPMC  in Pittsburg, PA (Dr. Douglas Kondziulka). It is good to once you decide on treatment to get at a minimum 3 opinions and then decide. However, if you still feel uncomfortable with the opinions that you get or the way you are treated, get that one more opinion. This is very important! Welcome to the forum! You will find a great deal of well wishers here as we are each going through some phase of treatment be it Watch and Wait, operations, post operations, radiation or post-radiation.

In 2004, I got both HEI and UPMC consults for free with no obligation. In 2012 in June when I was deciding whether to go with the Gamma Knife, I personally visited UPMC and talked one on one with Dr. Kondziulka.

I wish you well.

Mike

[sterry]

Hello knit78,
 Three years ago I was in your similar situation, the fatigue and sleeping! I had a 3.7 cm AN. I agree with the last post send your MRI disc to House and any others that read and give opinions for free. It is definitely a help. I used to read my computer at work with one eye, because I thought my eyes were aging! Had surgery and that went away! Also have lots of energy again. The radiologist that read my MRI told me, these are rare, and you have some time, and you should find a doctor that does a lot of these in a year, not a few. I found his advice to be very wise.
Best to you.
Susie

[Alison]

Dear knit78,

I am also recently diagnosed and frustrated! What you describe is very much how I am feeling, like my previous active life is now on hold because of dizziness and vertigo, balance issues, along with tinnitus, full head etc. I no longer feel confident about going out alone as I feel like I may fall over and am pretty frightened, to put it mildly, about the future. (I have posted recently about these issues in inquiries and pre-treatment issues).

I was diagnosed at the end of August  (14mm x 10mm x 8mm) and have been told I may get an apt with the neurosurgeon at my nearest centre, at the end of October. That'll be nearly 6 months from the start of my symptoms, and 2 months from the MRI. Then no doubt months before a surgery slot. My situation differs from yours in the fact that I am in the UK, but I just wanted to say I so understand the way you are feeling and you are not alone. I think the worst thing is waking up in the morning and it hits you all over again.

I've learnt so much from this site and have been amazed at the generosity and support given by the people who have been through this. I hope, being in the US you can get your apt soon.

best wishes,

Alison

[Alison]

Hi again Knit78,

a quick update. It's worth chasing the apts and being a "pest", even though, like you, I felt awkward about it.  I have heard today there has been a cancellation at my nearest centre and I have got my first apt booked for Monday afternoon. Exactly a month after my diagnosis. Fingers crossed!

So keep on keeping on.

Let us know how you do.

Alison

[Brewers7]

Alison,
     Welcome to the forum.  The good news:  the doctors may explain to you that the fact that you have such severe symptoms now may actually cause your "good" side to begin to compensate and thus speed your ultimate recovery.  I too was an avid runner prior to my diagnosis (5 to 6 miles a day and more on the weekends).  My doctors and I are convinced that being in such good shape (and much prayer) got me through the difficult times.  By the way, I am back to running, though not so fast and furious.  I said a prayer for you this morning.  Keep us posted.  Susan

[PamJ]

Hi Alison good new about your earlier appointment please let me know how you get on

[sarahinPA]

you should take the oppurtunity to seek other opinions, while still keeping your october appointment. I personally had Gamma Knife from UPMC Dr. Kondziolka, as Demsey mentions. He was an amazing doctor, and his team was wonderfil too. He pointed me in the direction of Dr. Paul Gardner at UPMC when it was time for my actual surgery. Dr. K. does Gamma Knife and is one of the most experienced in this field when it comes to ANs.

Good luck and please PM me if you have more questions about the staff at UPMC.

Also, im sorry that you are experiencing this, its a hard thing to process, but contiue to get information and discuss with the people here, they are a wonderfil spport group and will help you with many questions you may have, from a patients perspective.

[knit78]

Thank you all for the advice & insight. I finally have my CD with the MRI images & report. I'll be forwarding them on to Mass General and see what happens from there. I'm just hoping for someone relief some time in the future.

[New girl]

Sorry you have an AN knit78.  I was treated at MGH/MEEI.  I'd be happy to answer any questions or to compare notes.  Best wishes.

[kareno]

Hi Knit78:

I am sorry you have an AN.  I would take the opportunity and seek another opinion.  Dr Carl Heilman at Tufts Medical Center in Boston is outstanding and deals with Acoustic Neuromas.  My husband received superb care and in a very timely manner from him and the staff at Tufts I highly recommend them.  Best Wishes to you and I understand your frustration with the process.

Karen

[knit78]

I'm feeling a little less frustrated today. I faxed my MRI reports to Mass General yesterday morning and by the afternoon I had an appointment for Oct 1 scheduled with Dr. Barker. I read somewhere else on this forum that researching and looking for treatment is a full-time job. So true! I don't know what is exhausting me more now, the tumor or trying to find the right person to take care of me.

Thank you for all the suggestions and support. :-)

[MDemisay]

Dear knit78,

If you can have copies of your MRI reports and CD's made it is more than worth your while. That way you don't have to wait or chase them down as you mail them from one to the other. Just sayin'!

[New girl]

Hi Knit78,

Barker is generally very serious.  I didnt see him smile (slightly) until my post op appt.  If you ask him questions he will take the time to answer them so dont be shy.  He is extremely knowledgable about ANs.  Best wishes.