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Brain tumour? Please help.

24 Aug 2019 20:55

Please bare with me, I know already that what I’m saying is stupid and ignorant but please let me explain the situation. This may be quite long, so I hopefully won’t have to add anything else. 

Back in Feb of this year I had a case of the flu, and it was actually flu and not just a cold - I was unwell for about a week and subsequently when I got better I felt the lymph nodes on my neck were enlarged, I left it 10 days to give them chance to go down as I thought it was flu related and then mentioned it to the doctor when I was there for a different reason as a bit of a ‘just letting you know’ and was expecting her to say well it’s just the flu they are fine. 
However she sent me for a full neck ultrasound, the lymph nodes were actually fine in the end, but my doctor called me back into the office a week later (already knew it was bad because this never happens) and they found a 2cm tumour in my thyroid gland, my whole life collapsed and I felt like I was watching a film.

I was absolutely terrified, I couldn’t do anything, I had subsequent scans, biopsies, appointments all pointing to the suspiciousness of this tumour all of which took 2 months, until I had surgery to remove the tumour in May - after my surgery was surgeon told me that they found a further tumour behind my left lobe of thyroid gland, extra tissue and they removed all of my level 6 lymph nodes as a precaution. 

But let me emphasise the impact those 2 months had on me, I was like a mad woman, my OH (other half) had to quit his job as I couldn’t function, I was the crappest mother because I was crying all of the time, I was praying to a god that I had never praised before and I wasn’t sleeping - even though in my case the prognosis was a good one. I started writing my children letters for each of their birthdays. It was a eye opening experience and I’ll never forget it.

It seems it was one of the lucky ones. Despite multiple specialists and my surgeon saying there was only a 5% chance this wasn’t cancer, it all turned out benign, and the suspicious lymph node was actually extra thyroid tissue with an old bleed on.
I cried happy tears as did my whole family and I felt like I could run for miles, after previously feeling so drained I couldn’t even get out of bed. 

In the weeks after my surgery I started suffering strange symptoms, I could hear my heartbeat in my right ear (most of surgery was done on right side), my eyesight was starting to become strange and I just didn’t feel great. 
I booked an optician appointment and he said I was having issues with my tracking - it continued so I went to the doctor, she said it sounded like I was suffering from inter-cranial hypertension and if it continued to go to A and E, it did continue for about a week but then the hearing my heartbeat in my ear went away and I think my eyesight has improved slightly. The optician did mention that I had some old inflammation at the back of eye probably from an old infection. 

However, and this is the main point, every single day for the past 3 months I have had a headache, and it isn’t all over, it’s on the right side of my head at the front and it feels I can pinpoint it, possibly just above my right eye half way down my forehead, it isn’t anywhere else and it starts within a minute of me waking up and lasts all day, and it’s been months. I’m terrified I have a brain tumour, there’s surely no other explanation for this and I don’t want to go through what I went through at the beginning of the year. The wait was agonising and I don’t want to become that person again, I have almost resigned myself to the fact this is a brain tumour and I’m trying to be oblivious to this fact. 
It makes it worse because after I had the all clear, we decided to try for another baby and I am 13 weeks pregnant. I don’t want to go through what I went through and I’m terrified, my partner thinks I’m being stupid but he never understood what I went through, unless you’ve been through it I don’t think anybody does.

Brain tumour? Please help.

25 Aug 2019 02:07 in response to charrrhx

So sorry to read your news, I know what its like.  In 2011 I worked for a doctor and was feeling unwell.  He just said it was because I was grieving for my husband who had died 7 weeks earliet of mesothelioma ( asbestos). I had been telling him and his wife who was the nurse that I was not right. Again they ignored everything I said until I went out for lunch with a colleague and I collapsed . She got me home and demanded the doctor get me a scan. Next day I was dianosed with a grade 4 glioblastoma. I am apparently a marvel as I am still here 8 years after my surgery, radiotherapy and chemo.  Been left with extremly bad legs and cannot walk too far, but hey I am coping with the love of my son and family.  I was frightened to, but all I can say to you is just eep going day to day and try to stay positive.  I know that sounds bland, but I truly believe being positive helps.  Its been a learning curve for me as I used to do so much, and now I can only do small things.   Stay strong, and pray, it truly helped me. 

Brain tumour? Please help.

25 Aug 2019 08:43 in response to charrrhx

hi, sorry to hear youve been through so much and now feeling poorly again. I apologise in advance that I cant really offer advice regarding brain tumours which I sincerely hope it is not, but, i can offer advice regarding benign intracranial hypertension, as I have this myself. The symptoms you have described certainly fit the condition which are very similar to a brain tumour indeed and can be very scarey. However, it is a benign condition but symtoms are distressing. As you have also said you are pregnant may I please recommend you revisit your GP for further testing ( various basic tests will help diagnosis a suspected case of benign intracranial hypertension) as it is best to get it sorted sooner rather than later to avoid worsening symptoms. Treatments vary greatly depending on severity so I cannot offer advice on treatments, sorry. As you are pregnant I advise you to see your GP as early as you can as weight increase often aggrevates symptoms of this benign condition. I hope this may have been of some help to ease your concerns a little and I wish you all the very best, take care and good luck, Karen. X