On July 18, 2011, one of my doctors told me I had a 5 centimeter tumor in my cerebellum (and hydrocephalus) and I began this blog the next day. I was then 39 years old and this blog chronicles my experiences on a road NEVER imagined.
DETAILS:
- July 18, 2011 – diagnosis of tumor
- July 27, 2011 – craniotomy of resection of tumor
- August 4, 2011 – 2nd craniotomy (CSF leak)
- October 2011 – diagnosis of Cowden’s Syndrome
Backstory: Around Spring of 2011 I began to get headaches that I hadn’t ever experienced before. They were very hard to describe to my doctors and family, but the best I could do was term them, “Pressure headaches”. I would get this pain/flushing sensation at my neck/base of my skull. My vision would get shaded (kind of like the lights being turned down) and this whooshing/thumping sensation would slowly creep up the base of my skull and envelop my entire head. Over all I think each episode lasted anywhere from 60-90 seconds, maybe longer. On 2 occasions, during an episode, I lost muscle strength in my left leg and almost collapsed. (In hindsight, I think they may have been mini-seizures.) I had to balance myself on something sturdy until the episode ended. Looking back at that time – it never crossed my mind brain tumor.
I talked to a few doctors during these months and although one wanted to write me off as having migraines, I knew to push further and get with a different doctor. I told first doctor, “I get migraines. I’d pay money to have a migraine over this.” Thankfully, one of my doctors HEARD ME and sent me to have 3 diagnostic tests. I don’t remember exactly what they were but one checked my heart and one checked the arteries in my neck. The 3rd test was the CT scan….I recall vividly the conversation between the technician and I after the scan was over. “OK, we’re all done. Your doctor waiting for you so you can go to see him.” he told me.
My heart sank. I knew this wasn’t good. š¦
I remember walking up the flight of stairs, in a daze. I remember getting to the exam room. I remember my doctor walking in, shaking my hand, and saying, “There’s something there.”
hopeforheather 
You know, as someone w migraines, it’s tough to get that “oh well” syndrome when people can’t figure it out. I hope you’re feeling well…
Thank you very much…
Ugh! I can imagine what you’ve been through. I’ve had similar experiences but my diagnosis and complications are nothing like a brain tumor and CSF leakage! This is only the first of your posts that I’ve read and pray your most recent posts reveal good news!
It’s sad that it took me so long to get around to reading this post. š¦ I’m sorry. Good grief, our tumor stories are similar. As I looked for a possible diagnosis for myself (glutton for punishment that I am), I would run across the words ‘brain tumor’ and let them flit right out of my head again. It was such an improbability to me that I just waved them off as – silly. Shows what I know, huh?
Hi there…you know what’s ironic – in all the crazy in the weeks leading up to diagnosis…brain tumor was NEVER even on my mind. So, I agree…shows you how much I knew too! š
Thanks for sharing and creating a blog that mixes in your journey with useful info about the disease – a nice balance!
warmly,
Marcy Westerling
http://livinglydying.com/
Thank you!
It’s amazing how similar our stories are! You are an inspiration.
I get my inspiration from you and many others who have walked on this journey with me.
Such a wonderful initiative heather, I am too with you in this journey, got my second surgery done last week and am back to work now. My first surgery was done three and half years ago, same doc, this time he seems to have taken more of the tumor off I guess. Symptoms giddiness, difficulty in balancing, weakness, cough headaches etc. MRI is very important I guess periodically; which I missed post my first surgery. I am yet to genetic tests for cowden’s; lets see. Already seems God has given me life 2 times now – have to do some nice worthwhile stuff
Thank you for your comment! Did the doctors call your tumor gangliocytoma? May I ask where you are from?
I am from India Heather, and the doc called the tumor as gangliocytoma of left cerebellum and the disease seems to be called lhermitte duclos disease. He was saying this time that the condition is not life threatening, but periodic monitoring and tests need to be done. I too had CSF leakage this time, a lumber puncture procedure was performed and then it got well.
Wow! Our stories really do sound so similar. I’m thankful and happy to connect with you! Do you have a Twitter account?
Yes I do, but I don’t use that much. Its athreyaram; that’s my gtalk as well; would be wonderful to stay in touch and keep updating. You don’t need to be thankful, in fact I have been searching all over the net on this one, and somehow stumbled by your blog; I am sure there is lot of anxiety on this one, but now I believe most of it is not required. We need to live our lives every moment and try to make it worthwhile. There are much more difficult medical conditions that people suffer from, I guess we need to sympathize. This time I have been so much more positive, and hence recovered much faster.
Cheers!
Have you seen the page on this blog of others who have Cowden’s Syndrome also? I only ask about the Twitter if you’d like to be added to that page of “Contacts with Cowden’s Syndrome”. I feel very strongly about connecting as many of us as possible to help buoy us up when we are feeling down. I fully agree with you – there are many more serious syndromes than CS and LDD, and part of why I created this blog years ago was to help me process things (and to also include pictures of my cats which keeps me positive). š
Wow! Awesome, all the best for both of us and lets stay connected. The cats are very cute.
Cheers!
Have you been diagnosed with Cowden’s Syndrome? Since Lhermitte-duclos Disease are HIGHLY connected.
What a great post!!!
Thank you so much. Glad to connect with you. š
Wow. I never would have thought “brain tumor” either. I’m so glad you persevered and pushed for a diagnosis!
My 23 yr old daughter has been suffering with rare disease all of her life. She has multiple. The past year has been particularly awful when new, unrelated symptoms started. Even after two long hospitalizations, her condition did not respond to the treatment doctors tried so they just gave up and sent her home. We have had to research on our own and read studies and contact doctors around the world gathering diagnosis and treatment ideas.
Because she has no conclusive diagnosis, there is no treatment plan, no way to “fight” it, and insurance denies payment for anything we would like to try because they can. Worse, there’s no support group to join and no idea what her long-term prognosis will be. Its been a maddening journey that we are still taking day by day.
I guess my point is just to commisserate with you and also express how glad I am that you found your diagnosis & are reaching out to build a support group. Being proactive is so important! From our experience, severe illness with no diagnosis is perhaps the worst part of the journey. It’s very lonely and isolating. Doctors aren’t trained to “look for Zebras” when they hear hooves. So, when you actually have something rare and unexpected going on most either start calling you “a mystery” or they conclude “it must be psychological”. That last phrase makes me livid. It implies #1. that a person is “faking” or “imagining” their symptoms, and #2. Spreads a stigma that when or if something IS psychological it “isn’t a real illness”.
Medical journeys are not for the faint of heart! But you have an awesome attitude and are doing great things! God has a plan in all of this. ā”