Colloid Cyst Advice Please xxx

[MommaP_82]

Hi,

I had a mri in March confirming the reason for my constant headaches where due to a cyst. My go didn’t give me any details and just said he would refer me to a neurologist at New Cross. Since March my symptoms have got a lot worse. I wake up with a constant headache and it can go to manageable to severe, nothing will ease this. I also have spinning when standing or walking, hot sweats, dizziness, nausea and extreme fatigue.

As I hadn’t heard from my gp I called again and the referral hadn’t been sent so they fast tracked me and I was seen within a week. I saw the neurologist Tuesday and he showed me the report where it clearly states that I need an urgent referral to neurosurgeon as I have a large colloid cyst in my third ventricle. It is 4cm and my ventricles are enlarged plus CFS fluid may be being affected. The neurologist said he would refer straight away directly. I’m struggling so much and I haven’t worked since February due to these symptoms and my depression and anxiety.

Has anyone else had this and what is the next step? I’m so confused and scared about it all? Can I apply for financial help now I have a diagnosis of a colloid cyst? Will I have surgery and is that classed as a brain injury etc?

Any advice would be gratefully appreciated as I’m really struggling with everything and I have 4 children so trying to put on a brave face xx

[cat3]

I believe the removal of a cyst can be successfully performed endoscopically via a small burr hole, so with minimal invasiveness and in-patient time.

And in the absence of a bleed I guess the after-effects would also be minimised. But your neurologist should've explained the procedure and any other related issues to put you at ease ; maybe phone his secretary (via reception) to arrange a talk with him to outline the details.

Alternatively, you could phone the Headway helpline on 0808 800 2244 for information on the procedure .........though I doubt they'd comment on likelihood of brain injury as every case is unique to each individual.

Hope all goes well MommaP ; we're always here if you need an ear m'dear.... Cat x

[TaIaV]

Dear MommaP_82,

I am angry on your behalf that the doctor's office failed to refer you in a timely way to a neurosurgeon. There may be a time in the future when you go back to take them to task for that, but right now, with all your responsibilities, worries and questions, you need to reserve your time for things that move you forward to a very happy outcome.

I am sorry to say that I cannot answer the questions that you have. I applaud your effort to reach out to people with experience to get some answers. It sounds like you need answers in several categories:

- The treatment options. Including the timing, procedure, risks,

- The post-treatment scenario. What to expect, activity limitations, personal and professional care needed, risks, medications needed, follow up visits

- Financial matters. Sources of financial support, eligibility, timing, application process, expenses that you will have to cover.

- Practical matters. How to get help during the treatment and recovery period. Any arrangements you need to make. How to talk to the children about this.

Cat had two excellent suggestions. Your neurologist's office should provide you with good background material or references on the condition, the treatment options and the post-treatment considerations. Headway may be a good complementary source.

If you have family or friends, it would be great to ask them to do some research based on what you know about your condition and to contribute to a list of questions in the above categories that you can address with the neurologist, the neurosurgeon and the social worker at whatever medical center will be the center of care for you. If they are not the people to answer some of the questions, they can point you to where to go. Getting organized like this should reduce your anxiety.

I was not familiar with the condition you describe so I did some reading online. I was very glad to see that these cysts are not cancerous and that people seem to do very well once treated either endoscopically or via regular surgery. I fervently hope that you can quickly fill in the information gaps you face and then devote your pre-procedure time to a positive anticipation of: 1. Being free of the terrible headaches that you have suffered for so long and 2. Being able to enjoy your family and your life, as you richly deserve.

I will be thinking of you and the road to health on which you now find yourself. Visualizing you, with none of the pain, free to participate in life as you choose: Rediscovering old activities you enjoyed and trying new ones with your lovely growing children.

All the best,

Taia