Update, 1+ years post-op

April 18, 2010

Well my 1 year anniversary came and went without big occasion in January. My husband and I went out for a quiet dinner to celebrate, something that was hard to imagine a year ago.

This week I had my 1 year follow up with my surgeon. My MRI showed a clear head with no sign of tumour re-growth. My next follow up will be in 2 years, and I suspect I will continue to have these follow-ups for 10 years based on a 7% risk of recurrence in that time frame.

Still no smell, but you know what? It’s been so long now, that I don’t even think about it.

So my follow-up with my surgeon on April 2nd, over 2 months after my surgery. Hey, lets do a craniotomy, now shoo shoo off into the world! To be honest though, it has all been absolutely fine and I haven’t needed to see a doctor asides from having my staples removed. 

I can finally get all my questions answered, GPs really don’t see (m)any brain surgery patients so can’t really answer anything with certainty…

  • How is my brain, my cerebral edema, my skull, my incision?
  • Am I officially 100% tumour free, and was it definitely WHO Grade 1?
  • Is the gaping hole in the middle of my head filled with brain again? Lets see that CT!
  • Give me a time-line on this no-smell thing! Plus, the persistent chemical smell is getting really really boring. 
  • When will the large areas on my head that have no feeling, sort out the nerve damage? When my head gets itchy, I can’t feel anything when I scratch. Its driving me bonkers!
  • Do I still have to sleep on a 30 degree angle? Your nurses put the fear of god in me when it comes to head drainage! I’d really like to go back to a single pillow.
  • When can I exercise again? More than walking that is, I’m talking getting back to spinning and running here. 
  • When can I ride a bike, or more specifically when is it ‘safe’ for me to fall off a bike?Will it ever be safe?  I love my little Dahon, and hate the TTC.
  • When can I drink tea/caffeine again, and alcohol… when can I have a lovely glass of red again? Mmmmm Cabernet Sauvignon!
  • When can I fly? Life owes me that Parisian honeymoon that we had to cancel.
  • And I know neurosurgeons don’t care about vanity, but I’d like to know if  I will always have a dent in my head, and when I can have a hair cut, and use styling products. 
  • When will I be able to go back to work? Right now I can’t even concentrate through a 2hr lecture and be able to function afterwards.

There will be many more questions by April…

Early detection

March 1, 2009

Something I have learnt is to follow your instincts, you know when something isn’t quite right with you. Early detection is everything in the world of brain tumours – as with many ails –  so paying attention is essential. We need to start finding these things on purpose though, and not by accident like so often happens.

As the Brain Tumor Foundation has said, if only the general population could have routine head MRI’s, just like we work preventatively with PAP smears, mammograms, colonoscopy and prostate exams. Besides, according to the Brain Tumor Foundation an estimated 1 million people* have undiagnosed brain tumours (of all varieties) in the US**, 25,000 of them in NYC. 

*Every site quotes different statistics so this just gives a rough idea.        

**Sorry, Canadian statistics are much harder to come by.

Olfactory groove meningiomas

February 15, 2009

“Olfactory groove meningiomas are benign tumors that grow along the midline floor of the anterior cranial fossa. Delayed diagnosis is the rule rather than the exception. Despite advances in imaging and therapeutic measures, the average size of these tumors at the time of surgical resection has not changed over the past few decades. 

Olfactory groove meningiomas comprise about 14% of all basal meningiomas. The peak incidence is between ages 40 and 60 years, and twice as many women as men are affected.

Cranial radiation is a definite risk factor for developing meningiomas. Patients with a history of cranial radiation therapy have a 4 times greater rate of meningioma formation compared with the general population.

Surgical resection is the treatment of choice for most olfactory groove meningiomas. A bifrontal craniotomy is the preferred surgical approach. Using this technique, the bony skull covering the anterior frontal lobes is removed and the dural layer opened. Through an interhemispheric approach, the tumor, adjacent brain parenchyma, and the vasculature are visualized. The blood supply to the tumor is identified and detached. The tumor is removed by debulking along with the affected piece of underlying dura and bone. The dural layer is then closed using an allograft substitute, and the bone flap is replaced. Radiation therapy is generally reserved for recurrences that are refractory to surgical resection.

Recovery is typically slow, but as the edema in the frontal lobes subsides, the patient’s clinical status improves. It is only at this time that any residual permanent neurologic deficit can be assessed.

Morbidity and mortality associated with operative treatment of olfactory groove meningiomas have improved greatly over the past 3 decades. A 15% mortality rate reported about 20 years ago has decreased to nearly 0% as a result of current microsurgical techniques and advances in perioperative care.

Olfactory groove meningiomas, despite being slow growing and relatively uncommon, are among the largest tumors found intracranially. Advances in diagnostic and therapeutic measures notwithstanding, these tumors continue to grow and achieve astonishing sizes before they are discovered. This is because the tumor is located in a relatively “silent” area of the brain, which allows the mass to continue to grow slowly before neurologic decline is evident.”

Sources

http://www.residentandstaff.com/issues/articles/2006-02_09.asphttp://www.brighamandwomens.org/neurosurgery/Meningioma/Meningiomafacts.aspx

*Every source states different statistics. These just happen to be the ones I found today.

Random Facts

December 19, 2008

Brain tumours in general are not well studied as they are not as common as lung, breast, prostate, or colon locations.  Meningiomas have generally been ignored even more than other brain tumours. Here are some random facts I have found lately:

Meningiomas account for about 27% of primary brain tumors.

Meningiomas are most common in people between the ages of 40 and 70.

Among middle-aged patients, there is a marked female bias, with a female: male ratio of almost 3:1 in the brain and up to 6:1 in the spinal cord.

A new meningioma is diagnosed in about one in a thousand people each year and that 138,000 people in the US are living with on.

My only Canadian stats are rather unofficial… through friends I now know of 4 other people who have had meningiomas. What is the likelihood? That’s a lot of people considering I know very FEW people in Toronto!

Sources:

Brigham and Women’s Hospital Neurosurgery

“Curveball. When Life Throws You a Brain Tumor” Liz Holzemer

*Every source states different statistics. These just happen to be the ones I found today.

This is the little bugger

December 19, 2008

MRI_1

A screencap from my MRI results from yesterday. Yep, thats it, the round light coloured thing.

The results are in

December 2, 2008

It took 1 day not 5. SHIT.

“There is a mass lesion along the floor of the anterior cranial fossa. The mass legion is homogeneous in density and almost certainly represents a planum spheniodale  meningioma. The tumour measures around 3cm in greatest diameter but is surrounded by moderate edema and therefore significant mass effect is demonstrated and involves the frontal lobes on both sides as well as displaces the ventricular system posteriorly.”

In English? A benign tumour on my brain.

FUCK.

Has anyone ever said anything like that to you? Puts you in a head spin. 

Now what?

Wait for an MRI appointment. Wait for a neurosurgeon appointment. Wait for a neurologist appointment.