Regrowth Experiences

[Pryscodisco]

I had surgery in 2012 (almost three years ago) to remove a 4cm by 4.5cm AN. The surgeons unknowing left a small piece of tumor that showed up on the next MRI but has not been growing so far. It's been 18 months since my last MRI, however. Recently, in the last 3-6 months, my headaches have been getting significantly worse, I've been feeling a bit "off balance" (not dizzy, but not right), and have been having memory problems. I don't know if these are symptoms of regrowth, or if I'm just worrying too much...what are your experiences with regrowth?

[CHD63]

Hi Pryscodisco .....

So sorry you are experiencing increased symptoms recently.

I experienced regrowth of my tumor, but it was detected through regular MRIs, not by any increase in my symptoms.

If it has been 18 months since your last MRI, I would certainly contact my doctor and ask for another MRI.  Actually I am rather surprised you have not been on a yearly MRI schedule with a known piece of tumor left behind.

That being said, it is entirely possible that there is no growth of the piece of tumor ..... but for your peace of mind, you need to know.

I am still being monitored with regular MRIs so I know the fear every time I get a headache, feel extra off-balance, etc.

Thoughts and prayers ..... and call your doctor.

Clarice

[Penniferjiper]

Experiencing the same symptoms, almost eight months post surgery. Curious on your update since this post!

[v357139]

I agree with Clarice.  You can drive yourself crazy trying to guess.  It might just be post op symptoms and it might not.  By the time I was three years' post op, I had two post op MRIs as a matter of course.  Call your doctor and get an MRI.

[JLR]

Clarice I didn't realize you had trigeminal neuralgia. I'm suffering the same. I had CK 2010 but because of the pain I had another MRI. Have been getting yearly. Last one was Feb 2016 5 months later the tumor has grown pressing on the brain stem reaching for the trigeminal nerve. Had a few visits with neurosurgeons and even a email visit with Dr. Steven Chang and it was agreed surgery is the way to go. Probable in October. Has anyone heard of Dr. Alain de Lotbiniere. Appears to be a very qualified surgeon.  Still making up my mind but I think surgery is the way to go. What do you think. Thanks much and glad your pain free. That trigeminal us pretty text book. Electric shocks burning intense pain yup yup yup. Regards, Joan

[CHD63]

First of all, the original post in this thread was from 18 months ago so the patient may have moved on and is not checking the forum any longer.

Secondly, anyone who has ever experienced trigeminal neuralgia, knows immediately how debilitating it can be!  Joan, I have not heard of Dr. de Lotbiniere so I cannot address his expertise in treating ANs.  If, indeed, your AN is pressing on the trigeminal nerve, that pain should be relieved by removal of the AN.

Many thoughts and prayers.
Clarice