Colloid Cyst in the Brain - Why you need to know

By Tuesday, May 31, 2016 ,

After an awfully long silence, I am finally back. I could say I was travelling but the reason why I didn't write here was because I didn't know if I had the strength to write this post or not.

This end of May marks the one year anniversary of a lot of major events in my life.

In May of 2015
 
  • I turned 23, which was awful. Also, I have come to realize I like even numbers more than odd. I have a feeling 24 is going to be a good year
  • I quit my job



I want to talk about this because last year, when I started searching about this online, I really couldn't find any hope-filled articles. All I found were articles about people dying, or losing their short-term memory for the rest of their life. 

I was positive and I knew things would work out eventually, but when you Google something and the Internet doesn't agree with you, it can get pretty darn awful.

So, this post is just my way of putting out some positivity online. This is for the people who have just had a sudden MRI and find out that they are going to have a brain surgery in less than a month. This is my way of telling them that things can, and will get better. 

What is a colloid cyst


Instead of using the medical terminology which could confuse you or scare you more, I will try putting it in a more lay-man language. 

So, there is this gelatinous liquid in our brains, which also goes through our spine. In some cases, they can accumulate together in the third ventricle of the brain and form a small cyst.


This is a very nice and in-depth piece about colloid cysts by Melbourne Neurosurgery that I think you should give it a read

The cyst forms a membrane around it and it has the tendency to grow over time, and that is the main issue.

Colloid cyst can be present since birth or they can develop over time. You wouldn't know that for sure until you get a brain scan.


Symptoms of a colloid cyst in the third ventricle of the brain 


This is where it got super confusing, at least for me. The symptoms of this are so benign that you would completely ignore it. 

As the colloid cysts grows, it can start pushing the things around the brain and because of this it can cause intercranial pressure and obstructive hydrocephalus. Or in other words, the cyst would cause intense headaches and memory loss, in some cases. 

But this happens when the cyst is really big enough. When we were at the neurosurgeon's last year, he told us he was operating a girl who came to the hospital because she had intense headaches since a week.

When they did the MRI, they found out she had a colloidal cyst and she had to be operated immediately. 

Though, this was not the case with my boyfriend. 

He had a small accident, and when he got a CT scan, we found out he had a colloid cyst. He had not experienced any of the symptoms. Well, as you will read through the symptoms below, you will realize that they are so common that they might or might not be because of the cyst. 



Here are the general symptoms (A mix of what the doctors told us and what I found online)

- Headaches
- Memory loss
- Vertigo
- Nausea
- Losing consciousness


Because he had an accident right before this, the doctors asked him over and over again if he lost consciousness while driving. They were trying to find a way to connect the accident to the cyst. But turns out, it was all an accident.


Is this cyst cancerous or tumorous 


No. Not at all. It is benign

Is this life threatening 


Only and only if it is left there. Once you have got operated, there is no danger at all. 

Does the size of the cyst matter 


Yes. While my boyfriend's cyst was big enough that he needed to be operating ASAP (Well, he took a month's time to get his work and insurance aligned), I have also read about a lot of people who are on the wait and watch list

Basically the cyst has to be big enough for the doctors to operate it. I cannot even imagine how hard it can be for people on the wait and watch list, going year after year for an MRI and just hoping things work out. 

How is it operated 


Well, the doctors told us about two techniques - Craniotomy and Endoscopic resection.

In endoscopy, they make a small slit and work through the machinery (There is some laser involved, that's all I know).

While in craniotomy they cut the whole thing open and operate. By the way, by thing, I mean - the brain. 

Yes, endoscopy is less scaring and easy to recover from, and that;s why we were inclining towards, but our doctor told us that craniotomy had a better success rate. So, we we went ahead with it. There is still a big stitch scar, but, its not really visible now with the hairs and everything. 

Where to get colloid cyst operated in India 


Now, I want to mention here that we wanted to have the operation in Mumbai because there were already some really good doctors here, so we didn't research about the other cities. 

We were first inclining towards Bombay Hospital, since their machinery was way more advanced. But then, we went ahead with PD Hinduja in Mahim.

And I really want to give a shout out to Roshan of the God Years Blog, who put me in touch with a doctor at P.D Hinduja Hospital. She was the one who recommended Dr BK Mishra to us, who ended up doing the operation.

He operates 5-6 colloid cyst cases in a week, and he is definitely one of the finest doctors in the field.

If you are interested in meeting up with him to discuss your case, he meets first-time patients without any appointments. I think he meets them up on Tuesday, Thursday and Saturday. You should still call and confirm the dates before going there. 

It's on a first-come-first basis, so make sure you arrive there super early. 


For the current schedule, and contact number, check this and select 'Neurology on top


Post-operation 


I feel the operation is really the easy part, things can take a turn post-operation. First of all, you are on a bed rest and extremely tired. Also, looking in a mirror only makes you feel more awful. 

But, try to look at the brighter side of things because it will only get better from here. The first two months will be difficult and I suggest taking a long leave, well, as long as you can. 

No body will probably understand your struggle, not even me, but staying positive will get you through. 

My boyfriend starting doing a #100HappyDays challenge right after the surgery, it was a great way to stay engaged and find a source of happiness every day. And by the end of the 100th day, he looked and felt as good as he did before the surgery. 

Restrictions after the surgery 


- You cannot drive, for the first month or two. But I think that is it. You can go back to your routine after that. My guy took a 600 km bike journey 6 months after the surgery and he was all fine.

- Drinking restrictions. Depends on how much you drink, to be honest. But you should definitely hold it back the first two months and consult your doctor about it

- Swimming. The neurosurgeon did say that, but again, you should discuss this with your doctor

- Bunge jumping/ Sky diving/ Anything that could put pressure over your head. I know the doctor said that, but he also told me about a pilot who had this surgery and started flying after 6 months.


Finding your support group 


As I said, internet is a dark place and yet, it is the first place we search. If you have any questions about colloid cysts, do put them in the comments and I will try my best to get them answered. 

Also, I found this amazing group on Facebook called Colloid Cysts Survivors, these people have been through it all and if you have any questions, you can post them there as well. You will probably get an answer within half an hour. 


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11 comments

  1. Really heartwarming post, and great to know that it all ended well. Thanks for this informative and thoughtful piece. Warm greetings and best wishes to you!

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  2. Thanks for sharing about colloid cyst in details. wish you and your boy friend have a nice life ahead.

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  3. Thanks for sharing these information.. Very detailed.. Hope you and your boyfriend are doing good....

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    Replies
    1. Thanks a lot Pratikshya, things are much better now :)

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  4. Hope everything is fine now. Would love to read another article soon! :)

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  5. Dear,

    My sister is suffering from the same. A neurologist recommended me to Dr. BK Misra. But i wanted to double check on net and i found your post. You really lowered my anxiety. Thankyou!

    ReplyDelete
  6. Dear,

    My sister is suffering from the same. A neurologist recommended me to Dr. BK Misra. But i wanted to double check on net and i found your post. You really lowered my anxiety. Thankyou!

    ReplyDelete
    Replies
    1. Hi Harshad

      I am just glad I could help you :)

      Dr BK Mishra is indeed very much experienced and he handles colloid cyst cases on a daily basis.

      Please feel free to email me if you have any other questions about treatment or recovery (My email address is on the contact tab)

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