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Thread: Recurrent Colloid Cyst - Seeking ways to cope

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    Default Recurrent Colloid Cyst - Seeking ways to cope

    Hi there,

    This is my first time posting on this forum...or any forum for that matter. I see that there's been recent activity so I thought I would share my story and post a question here - see if anyone else's experience has been similar.

    I was first diagnosed with a colloid cyst when I was 17. It was found incidentally on a CT scan through investigations for a seizure disorder. The cyst was managed conservatively until I was 23, when it cause hydrocephalus and had to be removed (cyst was 1.2cm x 1.4 cm). My surgeons chose to take a memory sparing approach, and they left about 3mm of residual cyst behind. This was back in 2001, when the common understanding of these cysts was that they likely would not grow back. On my last consult in December of 2001, my surgeon wished me to "have a nice life" as I left his office. The seizures stopped and I lived life for 13 years believing that was all behind me.

    Well don't you know, it grew back (now 8mm)...and oddly, the seizures came back too. While there is not a lot of support to show that these seizures are related to the cyst, I am thankful that I've had them because they've let me know both times to be aware of the cyst and its symptoms...frankly though, I just want it out. I know there are surgeons who will resect asymptomatic cysts, but I've had a few consultations now and the predominant suggestion, since I've already had one craniotomy, is to wait it out and intervene when it becomes symptomatic. The second craniotomy carries increased risk.

    My next MRI is coming up in two weeks. I'm pretty anxious. I tend not to get headaches but have started to get them. I feel tired all the time and congested. Does anyone else experience something similar? It's kinda like post-traumatic stress, I think.

    Thanks for reading my post.

  2. #2
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((CCSurvivor)))))) ~

    TO BRAINTALK!

    Unfortunately, I don't have any experience to share with you. I hope that other members, who do, will respond.

    Also unfortunately, I do know a little bit about seizures. Are you still having seizures? Are you being treated for them with any medications? If you are, you might want to check our Drug Information link for your meds, in case your headaches, fatigue and congestion are side effects.

    https://medlineplus.gov/druginformation.html

    And if you are having seizures, headaches, fatigue and congestion can be a result of seizing.

    Anxiety could be a factor as well, and it's understandable that you are stressed and concerned about your upcoming MRI. Perhaps you could do a "risk vs benefit" analysis of having a second craniotomy to help you determine which course you should take.

    Sending healing, positive energy your way ~

    Love & Light,

    Rose
    Mom to Jon, 47, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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    Quote Originally Posted by Earth Mother 2 Angels View Post
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    ((((((CCSurvivor)))))) ~

    TO BRAINTALK!

    Unfortunately, I don't have any experience to share with you. I hope that other members, who do, will respond.

    Also unfortunately, I do know a little bit about seizures. Are you still having seizures? Are you being treated for them with any medications? If you are, you might want to check our Drug Information link for your meds, in case your headaches, fatigue and congestion are side effects.

    https://medlineplus.gov/druginformation.html

    And if you are having seizures, headaches, fatigue and congestion can be a result of seizing.

    Anxiety could be a factor as well, and it's understandable that you are stressed and concerned about your upcoming MRI. Perhaps you could do a "risk vs benefit" analysis of having a second craniotomy to help you determine which course you should take.

    Sending healing, positive energy your way ~

    Love & Light,

    Rose
    Thanks, Rose. It's nice to get some empathy from someone who can relate. My seizures are well controlled with medication - have been for over one year - so I am lucky that way. The fatigue is new. headaches are new. Nothing off the charts. Just persistent.

    I'll get everything checked out just in case.

    Best,

    CCSurvivor

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    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((CCSurvivor)))))) ~

    Yes, I do think it's a good idea to see your physician and relate what you've been experiencing with headaches and fatigue. You might want to request a complete blood workup too. Have your thyroid tested. It's worth it to rule out any systemic causes for your symptoms (which would be non-neurological).

    How wonderful that your seizures are controlled. I still recommend that you look up your meds on our Drug Info link, because seizure meds (AEDs) have a multitude of side effects, some of which can appear long after treatment started, or with dosage increases, or with a build up of meds in your system, which can occur if they aren't eliminated through regular bowel movements and sufficient urination.

    Because med side effects are typically the last thing doctors consider as the cause of symptoms, it's the first thing I consider. I've been right more often than I've been wrong.

    Please do follow up with your physician and let us know the results. Even if no other members show up here, I'll be here to support you.

    Healing energy on the way for you ~

    Love & Light,

    Rose
    Mom to Jon, 47, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

  5. #5

    Default psychiatric, asymptomatic versus symptomatic, hydrocephalus

    CCSurvivor:

    Personally, I believe all colloid cysts should be removed and not just those that are symptomatic or have reached a certain size. The reality is that some centers will only consider resection if the cyst is 1cm or larger. I've read that the largest known size found at autopsy is 1cm. In others words, we don't know of anyone who has suffered "sudden death" because of a colloid cyst smaller than 1cm. That doesn't mean that it hasn't happened but that we don't have any evidence or documentation to that support that cysts smaller than 1cm can cause sudden death. The 90's were known as the "decade of the brain" because of all the advances derived from brain research. Truth be told, we still know very little.

    I was diagnosed with schizoaffective disorder by a psychiatrist a decade after my craniotomy. Colloid cyst -- the gift that just keeps on giving. "Colloid cysts" sometimes present as a psychiatric condition. Trauma to or an enlarged third ventricle can sometimes be associated with mental illness. Post traumatic stress disorder is no laughing matter.

    The surgeon is sort of in a catch 22. A certain amount of hydrocephalus can actually make it easier for them to find the cyst. It's an art form and not a science. Here's a good artist removing them endoscopically.

    Regards and best of health,
    Matthew

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    Thank you Rose for your kind support and advice, and Matthew for confirming something I had only heard mentioned by a neurosurgeon in fellowship in passing - the benefit to waiting isn't just about the patient risk, but is also about the ease of the procedure.

    I had my MRI and my results are the same as 2015. I'll be having a conversation with my neurosurgeon about outcomes going two possible routes - one as an unplanned emergency event and the other as a planned procedure. I both want the cyst removed and am scared to have surgery again in equal measure.

    I also want to thank braintalkcommunities.org for hosting this forum for people living with colloid cysts!

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    ((((((CCSurvivor)))))) ~

    Are you still experiencing headaches, fatigue, and congestion?

    You certainly are in a difficult situation. I hope that your neurosurgeon will provide you with the information and guidance you need. Please keep us updated.

    Continuing to send you healing, positive energy ~

    Love & Light,

    Rose
    Mom to Jon, 47, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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    I'm feeling better. My parter suggested that he has similar symptoms when he has a sinus cold, so I have taken sinus medication and it seems to be doing the trick. I have to remember not everything is an emergency

    Thanks for asking, and for your positive vibes!

    CCS

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