constant imbalance/ vertigo

[Nannybee]

I am about 6 weeks post SRS treatment for my right AN and the vestibular symptoms are beginning to get worse and the tinnitus is louder than ever. Was hoping this was the worst of it, but it seems to get a little worse every day.

[nftwoed]

Hello;

   You may be entering a period of a little tumor swelling. I would imagine the ear is pretty 'ticked off' by this invasion of radiation! And invasion it was! Our body needs time to recuperate.

[Alison]

Hi, Alison checking in again.

Symptoms have not got any better, in fact I reached the 6 month post SRS date this week. Two days ago I noticed a greater feeling of pressure and fullness in my AN side of head/ear and louder tinnitus accompanying deterioration in hearing. This all seems to exasperated the imbalance, which I thought couldn't get much worse!

So I hoped in vain for a 6 month breakthrough and am now getting a bit despondent I'll get one before 12 months. Onwards and upwards!

How is everyone else doing? Hope you're all OK.

Alison x

[nftwoed]

Hi Alison;
   I'm so very sorry ... But, I do hold some optimisn yet at your being just 6 mos. out.
   In many ( not all, unless NF-2 ), gradual hearing loss following SRS is not unexpected. I believe, in general, the greater the loss going in, the greater the loss following SRS. That would account for the increased tinnitus.
   Re, sensing aural fullness, seems you are still within the time frame for tumor swelling but the sensation of aural fulness accompanies many ear conditions ( to include tumor edema ). I'm unsure the sensation is always unstood ( of unknown etiology ).
   Do you have to wait another 6 mo. for an MRI?
   It's so hard to maintain optimism with the passing of days, isn't it?
   But; From what little I know, you're still within a swelling, hearing loss, a stopped tumor growth stage.

[Alison]

Hi, thanks for the reply nftwoed.

Yes, I have to wait 6 months for the next MRI. Tinnitus has increased again this week, now sounds like the roar of a gushing weir after heavy rain! I know that sound well, as we have one in my city. But now I have my own personal 24hour one!

Onwards and upwards. Hope you're all well.

Alison x

[Tumbleweed]

Hang in there, Alison. 6 months is still early in the game.

Your severe symptoms may be a sign that your tumor is dying an especially fast and early death, creating a lot of inflammation in the process. I had a very rocky recovery after CK, but it was followed by dramatic necrosis and shrinkage (after initial swelling).

You should be feeling better in another 6 to 8 months, if not much sooner.

Best wishes,
TW

[Nannybee]

Alison,
So sorry you continue to have the increase in symptoms. You are certainly not alone in this experience. My tinnitus and balance issues also continue to worsen (plus worsening, now daily headaches) since my SRS in late April and I recently had to take a medical leave from my job as a result. I will continue to follow your progress and hopefully we both start feeling better soon!

[Alison]

Thanks Tumbleweed for the encouragement. It can get very dispiriting when things just seem to get steadily worse, rather than any better.

And Nannybee thanks also. I hope you start to see some improvement soon. In the words of the late, great Curtis Mayfield, I suppose we just have to keep on keeping on!

Alison x