dear update.

Dear update…

I am kinda at this stage realising that there is nobody else taking “umbrella” care for me.

We had appointment  in early June  (7 weeks ago) and I was to have a few bits referred, done, and then pop back to you.

WEEELLL…am still waiting on all the bits…so nothing much done…

we were to and i know you have kicked off the things agreed:

  1. refer to opthamologyseeing them in September.
  2. refer for MRI review of plumbing in brain etc –locally, i called and it looks like STILL a 9 week list so October? Seems LUDICROUS! Given that my initial surgery was last December, and the appointment i had with you was “theoretically” my 6 week check!
  3. get neurophysiotherapy to do conductive studies on nerves –not a word on that one – BUT i do know you said that they wer in very short supply and were due to send a batch over from UK to do a batch of similar tests…but not eve an acknowledgement letter.

other than that,  i have gone to my GP and given a baseline of symptoms and i am attending a physio who is very genuinely interested.

Headaches . A brief list of the good day and bad day cocktail of drugs mixed by my patient OH. Not as good in past few weeks as HAD been.
Exhaustion. is currently a part that pisses me off after my main surgery 8 months ago. I STILL feel the struggle to waken and shortly after getting up, showered and downstairs i NEED to sleep.
Weakness. my LEGS are incredibly weak – as in achy, painful, i have run a marathon sore before i even put foot to floor. I have NOT managed more than very short walks with Hazel my stick and companion. and even at that could not begin to attempt a family day out. This week am determined to be mum at soccer tournament and so have had to hire a wheelchair – otherwise i would be staying at home.


Balance. My physio isn’t EVEN rehab physio it is VESTIBULAR rehab physio – how to walk without falling. How to move in a “busy” environment where there is opposing motion…and you almost feel dizzy? Have been working with him now for about 6 weeks and today he felt the vestibular sense was not as good as it had been. 


Eyes. This seems pathetic. It seems NOT medical but it IS.
  • my range of sight is poor
  • my eyesight is blurred
  • the double vision test is ALWAYS double
  • my Right Eye can’t keep up with my left eye
  • my Right eye is crooked now in pictures
  • putting on eyemake-up hurts
  • to move my Left Eye in its socket is painful
  • to look to extreme ranges with left eye hurts the eye muscle – i think
  • with my distance, varifocals, intermediate and close range specs i am NOT clear.
  • i feel dizzy if i try to focus while i move my head
  • i feel dizzy if i move my eyes and walk.



  • physio has concerns about this as the exercises i was discharged with for ocular rehab are now NOT possible as my “field” of vision, and focal lengths seems to have changed. So he is very keen to have the ophthalmic opinion.
  • all my numb feet, numb leg, tingling fingers, strange sensations in face… will HOPEFULLY be picked up by the neuro physiotherapist who is coming to do my “conductive nerve studies” –
  • meanwhile my HANDS seem to have become something different – GP feels she would like neuro opinion on them as doesn’t feel is fluid and ACCP bloods ok.
  • knucklesphoto 1 (1)They are puffy between the knuckles, and finger skin stretched tight at times,  at times stiff, tight, and generally weaker in 3rd, 4th and 5th fingers. Physio has me using physio putty
  • BLOODS. My new symptom – as in since i got out of hospital is that i have strange readings in my blood tests. They are being repeated every few weeks…and same old same old each time. PLATELETS too high and ESR high. taking meds


All in all i feel that while i made initial improvements, and have recovered post operative, i have now plateaued – for about 6 weeks. OR this is my new baseline- in which case i need accept that and adjust life accordingly.

  • I do not feel any better
  • I am so tired
  • headaches increased
  • dizziness increased
  • eyes very worrying for me
  • legs make mobility desperately limited.

and based on all the other appointments am waiting on, is not a mission am going to be finished them by the time i was due to be back to you…so…Help please tell me what to do?

or do i WAIT?









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