Hi just wondering if anyone else has had any experience with regards to a pineal parenchymal tumour with immediate differentiation. Looking for some advice or general information off someone who also has this.
I have researched your consultant she seems amazing. Im glad they removed it for him, why on earth they would want to leave something in that they dont really know what it is is beyond me. And im finding it hard leaving something there. I think it is giving me problems i feel like rubbish if im honest havent felt this ill in a while. Just hope it hasnt spread. We will see monday
Hi sorry but i felt unwell because the ventricularostomy had failed and blocked which meant i had a hydrocephalus again. So needed emergency surgery for them to redo it. I came home and then i had some swelling and was actually leaking csf fluid from my wound so i then ended up with an infection at the wound site. I came home today. Its been a rollercoaster the neuroteam havent been the best and their communication has been awful. Im glad to be home just hope my body doesnt heal itself again. If it does ill have to have a shunt. No change with the tumour so very pleased indeed. I asked a few questions and they wont remove something that isnt doing anything as the risk is much greater to have the surgery apparently. Hope you enjoyed your time away.
Hi, My wife has recently been diagnosed with a PT, (type unknown) and feels like we are stuck in a void waiting for further diagnosis with the second MRI scheduled in 6wks despite nothing happening so far other than CT and 1xMRI 1 month ago! She is feeling the same anxiety, fear and frustration and it would be great to put you two in touch. Pls PM me your details so I can make the intro if it could help you too. Sending lots of strength and positivity!
Hi, I have been reading this thread (appreciate it is over 2 years old now) and was pleased to see the name Miss Karabatsou.
I was diagnosed with PPTID back in August 2017 aged 23, and was treated by Miss Karabatsou at Salford Royal.
She is an incredible woman, and the team at Salford Royal are amazing.
I started with head aches, and what i can only describe as a 'whooshing sound' in my right ear (which i now know was a result of the blocked ventricle causing hydrocephalus) around the age of 16 which progressively got worse over the years. Having been to the doctors on numerous occasions, these were put down as Migraines and 'treated' with Migraleve.
In August 2017, I ended up at the doctors with excruciating pain in my head and an ambulance was sent to take me straight to A&E.
Here they did a CT scan, and confirmed i had a 'lesion'. I was then rushed to Salford Royal for an emergency ETV to sort out the issue with hydrocephalus and a biopsy of the tumour. After which i suffered an extradural bleed on the right side of my brain which resulted in another operation a week later.
Week 3 of my stay in hospital, they performed surgery to remove as much of my tumour as possible which thankfully all went well. A long 14 hour operation for Miss Karabatsou - she is a remarkable woman.
After 5 weeks in Salford Royal, I was discharged and sent home awaiting Radiotherapy at The Christie Manchester which was completed just before Christmas of 2017.
I am coming up to 7 years post diagnosis this year, and thankfully have had no issues since.
I hope your husband is doing well, and i hope Flowerpot1 has also managed to be seen and treated for this very rare disease.
