2 Years post op and don't know what to do?

[larrystambaugh]

Hello,
First post. 5.5 CM x 2.0 CM AN removed in April 2010. Surgery was done at Johns Hopkins by Dr. John Weingart (Neurologist) and Dr. Howard Francis (Ent). Surgery took 15 hours to complete. Deaf in left ear and no balance center on that side. Went back to work in June 2010. Was working 2 jobs, 60 hours a week. Started having severe headaches stabbing pains in the occipital nerve facial numbness and swallowing  issues. All the symptoms I had before the tumor was removed. To make a long story short I have been through several MRI's and MRA's and a CTA. Everything looks good. I have had also had 2 nerve blocks done with no results. I have been going to the JH Bayview Headache clinic for about a year. Dr. Nijjar (Neurologist) has tried several different drugs with little success. I am still suffering from severe neuropathy but the headaches have going from pain to vertigo. Dr. Francis believes that I am suffering from Migraines headaches as well. He put me on a migraine diet with no success. I have had severe vertigo since Nov. of 2011. I had missed a lot of work in the first quarter of this year. I am a Database Specialist which is a stressful job. In June of this year I started having symptoms I had never felt before. I started having constant vertigo with things moving left to right. When I would look at my keyboard or monitor they would move. When sitting my body would rock back and forth. I called JH and was sent to a Vestibular Therapist. I was diagnosed with MdDS. Mal de Debarquement Syndrome which is a balance disorder. I am now not able to work because of this. I am on short disability. Does anybody have or experienced this disorder? When I experience any stress the symptoms are much worse. I am working with Dr. Nijjar at the headache clinic and will be going to the anxiety clinic at the end of Sept.   

[alabamajane]

Hi and welcome,
I don't have any wisdom/ advice but wanted you to know that there are people on here that probably have experienced some of this,,, I hope they will post soon,, do you think it could be a pinched nerve of some sort, maybe from the surgery? Just a thought ,, so many nerves are involved in the AN area,, I have headaches from time to time, but not migraine type,, and I have focus issues with my eyes,,,but not on the scale you are,,
I truly hope you can find some relief soon and hopefully you will get some advice on here soon,, just know we are here and praying for some relief for you soon,,, wish I could say more to help,, best of luck Jane

[Chances3]

Hi Larry,

Hey man you're going through a lot.  I had a middle fossa operation almost two years ago.  Unfortunately I have not fully recovered.  What lead me to an ENT and MRI were full spin vertigo attacks.  They were severe, ugly and increasing in frequency.  By the time of my diagnosis, I was having them every few days.  The surgeons severed my left sided vestibular nerve and removed my AN.  I still suffer with some vertigo attacks, I average 1 a month.  Let's talk about you, because you need to get better.  I would go on a diuretic if you're not already on one.  Eat a healthy diet, stay away from all types of nitrates, sulphides, MSG, beacon, cold cuts, I think you get the picture.  I have even found cheeses have a lot of salt and that doesn't help.  I spend 10 hours a day in front of three large computer screens.  It's challenging for a normal person, so you know what it's like for us who have been compromised by surgery and the AN.  I would try and get away from the screens even for a few minutes during different intervals during your day.  The migraines could be related to stress.  Either way, stress is a real killer and it has a bigger impact with AN and post AN sufferers.  You are going to have to manage your stress one way or another.  I have a good friend who suffered from migraines for 2 years.  She changed doctors and they found out she had an allergy to gluten.  They put her on a gluten free diet and the migraines went a way.  I hope some of this helps, try and get the stress under control, it's going to help you in your recovery.  Stay in touch.

Bob

[It is what it is]

My thoughts are with you as you try to find a resolution for your symptoms. I'm glad you posted.  There are many of us who care and many who also have experiences to share that might be helpful.  Unfortunately I am a too new postie to be of much help. 

karen

[larrystambaugh]

Thaaks for the replys. I wish I could find somebody that has experienced MdDS.

[Mei Mei]

I went to the Hopkins Headache Center and received no help there.   The doctor told me to stop the Alleve I was taking every day and to come back in three weeks.    I never went back there and went to Dr. Ivica Ducic who also referred me to Dr. Maureen Moriarity both at Georgetown University.   They are the only people who helped me out of this nightmare of headaches.    Go to them and they will help you.   They truly understand the Acoustic Neuroma recovery process and the headaches that come with it.
Sincerely,
Mei Mei

[thisisajourney]

Thanks for the replys. I wish I could find somebody that has experienced MdDS..

Maybe there is a MdDs website similar to tis site:-)  I m 2 years post op. Tumor was 4cm X 2.9 all but three percent was removed. One thing I have notice is when I m playing a marble game on my tablet that my eye starts drying out and I get a sharp pain in my eye because I forget to blink my eye and it hurts.