Hi Simon,
This is my advice to you: Regarding balance issues- definitely see a physical therapist for that. It is amazing all that can be accomplished with physical therapy. There are some that specialize in balance issues, but I'm sure all physical therapists address balance issues.
Regarding your headaches, go to a neurologist or a headache & pain specialist. They will help you get off the pain medication and on to a prophylactic treatment. I have had a headache every day for the past 53 weeks and this is what I encountered along the way. I started out taking ibuprofen. It was the best and only thing that would make me feel headache-free for up to 6 hours. But as soon as 6 hours hit, the pain came back just as intensely as before taking the ibuprofen. So I just kept taking it. I was taking nine (9) 200mg tablets a day. I would wake up with a headache everyday and start the cycle all over. I developed rebound headaches which is the label for the cycle I just described. It is very common with any over the counter pain meds (ibuprofen (Advil), Tylenol, Aleve, Excedrin, etc). If you don't break the cycle, you will have headaches like that for the rest of your life, in addition to bleeding ulcers or a bad liver. Additionally, the pain meds, although they seem non-toxic, can become toxic to your meninges (lining between your brain and skull) which could cause swelling that could in turn contribute to your ear pain. My surgeon at House Ear Institute referred me to a neurologist who told me that the toxicity of the ibuprofen caused aseptic meningitis. He prescribed a nerve medicine (Amitryptiline) to get me off the ibuprofen which also kept the headaches at a manageable level, but there were side effects (dry mouth, weight gain, drowsiness just to name a few). So after taking that for 6 months I tried to ween myself off of it (due to the side effects) and my headaches came right back in full force. My neurologist referred me to a pain management doctor (headache & pain specialist) because they are the ones that can do the injections (occipital nerve blocks, botox, etc.). So I saw the new doc and got nerve blocks on both sides of the back of my head and also got an MRI of my neck to rule out anything related to the disks in the top of my neck. The MRI was clear and the nerve blocks did not work. Based on that information the headache specialist said that I just have an irritated occipital nerve on my surgery side due to the acoustic neuroma surgery. I told him that I liked the Amitryptiline but did not like the side effects, so he said I should take Neurontin. I asked what the side effects are and he said drowsiness. I told him I do not want to take anything that will make me drowsy during the day because I work and don't want to have to fight to stay awake at my desk. He said there is a new product called Gralise (actually same drug family as neurontin, but a time release formula of it). I only take it at night and I have no side effects during the day. Unfortunately, the nerve pain can last for years so best to just manage it.
What I have learned from all my post-surgery issues (Balance, TMJ, headaches, etc.) is that although the surgeons at House are top-notch for removing acoustic neuromas, they are pretty lousy at dealing with all the post-surgery issues. Probably because they have never gone through it and everybody's recovery has a unique set of challenges. It was physical therapy that healed my jaw (that was scarred down due to lack of stretching after the surgery), my dizziness, and my balance. And a neurologist or headache specialist that managed my headaches.
As far as your ear and throat pain, that can be related to irritated nerves as well. Sometimes I have a pain in my ear that feels like an ice pick stabbing it. And I too, had the sensation of not being able to clear my ear accompanied by the pressure.
Good luck with your headaches, that seems like your biggest challenge right now. Just be your own health advocate and don't give up.
Michelle
