Diagnosis in 2013 but symptoms have returned

[zeekay]

Hi - I have been registered here now for a while since diagnosis in 2013 though have not posted anything to date. However I have learnt so much and benefited from posts here so thank you all for your contributions.

I was diagnosed with what I now know and have been told was a very small acoustic neuroma measuring 4x3mm in 2013 but has slowly but steadily grown to over 11mm as per my last annual consultation in September 2018. I had undergone intensive VRT -vestibular rehabilitation therapy to restore my balance over a period of almost 2 years. I had to leave my full time job eventually as the stress meant I continued to have really bad bouts of vertigo, imbalance and what I call a heavy head. So until about a month ago I have managed symptoms really well with a part time job. In the last year I have noticed that my hearing is going gradually and consultant has agreed to refer me to ENT or somewhere (can’t remember) for hearing therapy or something of the sort. However in the last 3 weeks I have deteriorated significantly to the point where I can’t leave the house with all symptoms returning to when I was initially diagnosed. My balance has deteriorated, Bouts of vertigo, and a constant head ache. I have had to be signed off work which is frustrating. I went to my GP to ask for medication which I had not need for the last 2.5 years or so and have now started taking again. Buccastem knocks me out so feeling tired a lot. GP reckons it is possibly because of a cold I was recovering from. I have also been referred to ENT for VRT. This is frustrating as it has brought back feelings of anxiety, loneliness and helplessness I felt and experienced in the first 2/3 years of diagnosis. Has anyone been in such a situation which feels like having a relapse as a result of another medical condition.

Thanks

[drdeanbellavia]

Zeekay:

It sounds like you may have waited too long and you need to get your AN killed by gamma knife surgery (not invasive surgery). I had the same downward spiral as you in 2002 and within a month had total loss of hearing and balance due to an AN in my left ear vestibule.

You should immediately opt for gamma knife surgery before it gets too large to treat with gamma knife.

As far as the imbalance, pain, etc, is concerned, there are cerebellum-resetting exercises that you can do to relieve them, but it will take about a month to do. The more imbalance your cerebellum is the more it will "heat up", give head pain and affect your overall balance (somatosensory system). The longer you wait for the gamma knife surgery the more severe your balance, pain, etc., will become and the longer it will take to resolve them with the exercises. Link to:

thebioengineeringco.com/ind...

I hope that this motivates you to take some action, although action is hard to take, when you are in pain and woozy, until you have had enough of it and commit to resolving it.

Dean

[zeekay in reply to drdeanbellavia]

Dean: Thank you for your reply. Really helpful. Regarding the option for gamma knife surgery, this has been discussed with the consultant I have been seeing for my annual consultation. However he still maintains my AN is small for surgery though I know how I am feeling. I have now received date (21/10) to start VRT for my balance and date for hearing therapy? In the meantime, I have also started exercises using link you posted to another post (Keith’s post) on here. So thanks for that. Have seen some improvements.

However I think I will ask for an appointment to discuss GKS as I think my symptoms are persistent and hearing is deteriorating.

Thank you.

Zeekay

[drdeanbellavia in reply to zeekay]

Smart move.

[DavNK]

Zeekay, how are you feeling now? Did the VRT help at all? I have constant dizziness and had very bad vertigo today as well. I have a 8mm VS (also been told to w&w) but am feeling pretty miserable with my terrible symptoms.

[zeekay in reply to DavNK]

Hi DavNK thanks for checking in and sorry to hear about your situation. All I can say to start with is that it eventually gets better. And I can say I feel a lot better in the last 4 weeks or so since starting VRT and exercises which are similar to exercises mentioned in drDean’s post. Your regular exercises (I go for walks usually 5 mile walks at the weekend but currently doing only at most 2) could also help from my exercise but best to get VRT exercises to settle your balance and vertigo and dizziness will also begin to get better. I have bad days mostly towards the end of the day if I do too much so I do a lot of pacing myself. Fortunately I have never experienced sickness. Every ones experience is different from what I have picked from posts in this group. I am now waiting for an appt to discuss results of tests, the last of which I did at the beginning of December as well possibility of GK. I think the consultants/doctors try to avoid GK or invasive surgery for as long as possible if therapy helps for all the reasons people may have already mentioned. Keep on with the exercises- it definitely can feel lonely, frustrating and at times debilitating but it gets better. Breathing exercises and meditation have also been helpful for me. Once again so sorry about how you feel currently and good luck with exercises and other forms of treatment during the watch and wait period.

Zeekay