Is your tumor in a parietal lobe?

Parietal lobe
In January after experiencing tinnitis and hearing loss the ENT consultant sent me for an MRI brain scan as a precautionary measure. A mass was found, this was an incidental finding. In January, all I was told was that I had a 'mass' on my brain. I waited and waited for an appointment with a neurosurgeon, 2 months later, nothing, I was told there was a 12 week waiting list, which the time hadnt started yet until it was on the appointments dept desk (I had waited 2 months already - which to my alarm did not count in this time for the waiting list!). I eventually went for a private consultation with the surgeon I was to see through the NHS as I was worried sick. My MRI scan was reviewed and I was told that the 2cm x 2.5cm lesion was likely to be a low grade glioma (they knew this is January), it is in my right subcortical partiel lobe. They are adopting a wait and watch approach and I have to get another brain scan in 3 months. This will mean that it will be 5 months between the scans, I am concerned that this is a long time and without a biopsy, they cannot be 100% sure of the grade of tumour. I experience headaches (mild but daily), occasional sharp pain at the top centre of my skull, sharp pain in my left side (had this for months), pain in my left shin bone and burning sensations in my left foot. I feel my eyesight has deteriorated and I appear to be developing dyslexia, when reading on paper the words appear to move from side to side, I also cant find words at times and can't seem to absorb info the same as I have in the past. I experience extreme fatigue. All of these symptoms, I have been told are unrelated to the tumour? I am concerned that the wait and watch approach is dangerous, is it not better to remove a glioma while its in its early stages rather than waiting until its much larger or the cells have changed into a higher grade. Has anyone else been through a similar experience? Many thanks P

Pazza said:

Parietal lobe
In January after experiencing tinnitis and hearing loss the ENT consultant sent me for an MRI brain scan as a precautionary measure. A mass was found, this was an incidental finding. In January, all I was told was that I had a 'mass' on my brain. I waited and waited for an appointment with a neurosurgeon, 2 months later, nothing, I was told there was a 12 week waiting list, which the time hadnt started yet until it was on the appointments dept desk (I had waited 2 months already - which to my alarm did not count in this time for the waiting list!). I eventually went for a private consultation with the surgeon I was to see through the NHS as I was worried sick. My MRI scan was reviewed and I was told that the 2cm x 2.5cm lesion was likely to be a low grade glioma (they knew this is January), it is in my right subcortical partiel lobe. They are adopting a wait and watch approach and I have to get another brain scan in 3 months. This will mean that it will be 5 months between the scans, I am concerned that this is a long time and without a biopsy, they cannot be 100% sure of the grade of tumour. I experience headaches (mild but daily), occasional sharp pain at the top centre of my skull, sharp pain in my left side (had this for months), pain in my left shin bone and burning sensations in my left foot. I feel my eyesight has deteriorated and I appear to be developing dyslexia, when reading on paper the words appear to move from side to side, I also cant find words at times and can't seem to absorb info the same as I have in the past. I experience extreme fatigue. All of these symptoms, I have been told are unrelated to the tumour? I am concerned that the wait and watch approach is dangerous, is it not better to remove a glioma while its in its early stages rather than waiting until its much larger or the cells have changed into a higher grade. Has anyone else been through a similar experience? Many thanks P

?benign tumour left frontoparietal lobe
Hi Pazza

I am writing this about my 22 year son, Ross who found out he had a 32mm X 22mm mass in his left parietal area in March 2012.

He had grandmal seizure in his sleep, out of the blue in January. We thought it would be epilepsy but to our horror found ou this diagnosis after the MRI in March.

He is in the same situation as you- watch & wait,with a further MRI in September. They say it has all the 'appearance'of a benign low grade -probably-Glioma. They wont biopsy it because of where it is or remove it. This is because he has no other symptoms at the moment only seizures, which seem controlled at present on Lamictal 50mg twice daily. He's lost his licence for a year and all in all its a nightmare.

The Neurosurgeons team are very good but I feel there are no proper answers to anything and like you- am worried about it being left to possibly grow bigger. They cant even tell you how slow these things grow.

I hope your next scan is good. How old are you? Regards Mandy

Pazza said:

Further symptoms
Hi folks,
I would like to say having read everyones stories, my heart goes out to everyone, its a scary experience, and the fear of the unknown is horrendous. Not knowing what is going to happen to you. Mandy, I am sorry to hear about your son. It is horrendous that we are told very little and need to wait for months with the worry. Thanks for your replies, sorry I hadn't seen them earlier. Its the GP that has said they were unrelated, the neurosurgeon said this too, but I think they are possibly trying to not worry me. They did however say they will bring my scan forward, earlier than July. Unfortunately, the hospital does not have an earlier MRI appointment, its on 2nd July. I am 42 btw, with two daughters aged 23 and 4 years old. I have had the strange sort of numbness/heaviness/weakness in my left arm for about 2 months now, has never went away. My tumour in January was 2cm x 2.5cm in my right partial lobe. I now have extreme tiredness, I want to sleep as soon as I am home from work, and sleep all weekend. I have started to get very stingy headaches, blurred vision and strange dizziness/weird lightheadedness. I also experienced a strange episode of seeing large balls of fire in my periferal vision. I am so worried that the tumour has changed in sized or grade and I am still kept waiting! I think the Gp seems to think I make up the symptoms, I do have a number of symptoms and I seem to think she thinks I am a hypacondriac, but I do have these symptoms, it isnt my imagination. I am not asking for time off work or anything, I have nevr been off work in 13 years, its so frustrating. I worry that there is cancer elsewhere as I have swollen lymph nodes under my neck, that have been there for months, pain under my arm in my ribs and pain in my breast, heavy periods that just never go away. Pazza

Was I surprised
June 1 was taken off a cross country flight with slight seizures on my left side. I was sent to one of the top neuro centers and have a 4 MM mass on the right parietal lobe. Will be having a biop and surgery within the next few weeks. You can knock me over with a feather, did not see this coming, but, now I know that there has been some mild symptoms that I did not think were important. I am reading all that I can and do not look forward to the surgery but will be so glad when it has been taken care of. Consensus is that it is not malignant but no promises.
In reading some posts about how little information is given to some of you about what is happening, there are many support groups out there and I for one learned the hard way that you have to stand up for yourself and be a strong advocate for your own, or a loved ones, health. I am told that there are successful new technologies for shrinking brain tumors, however, get yee to the best to be sure or at least check out the case studies at the top teaching centers!
There are many web sites but I have found that moving about the major medical centers web sites have the best information.
Try: http://health.usnews.com/best-hospitals/rankings/neurology-and-neurosurgery to click to the top hospitals and doctors.
Good Luck to all of us, we will need it.

mandya said:

?benign tumour left frontoparietal lobe
Hi Pazza

I am writing this about my 22 year son, Ross who found out he had a 32mm X 22mm mass in his left parietal area in March 2012.

He had grandmal seizure in his sleep, out of the blue in January. We thought it would be epilepsy but to our horror found ou this diagnosis after the MRI in March.

He is in the same situation as you- watch & wait,with a further MRI in September. They say it has all the 'appearance'of a benign low grade -probably-Glioma. They wont biopsy it because of where it is or remove it. This is because he has no other symptoms at the moment only seizures, which seem controlled at present on Lamictal 50mg twice daily. He's lost his licence for a year and all in all its a nightmare.

The Neurosurgeons team are very good but I feel there are no proper answers to anything and like you- am worried about it being left to possibly grow bigger. They cant even tell you how slow these things grow.

I hope your next scan is good. How old are you? Regards Mandy

As a mother and a patient
Hi Mandya
I am really really sorry to hear about your son. You, your son and family must be in terrible shock. I don’t know the pain you are experiencing, but as a mother myself, I can only imagine. I too have children of my own, two boys 15 and 16; no mother should have to go through this with their child. There are lots of Mums on this site with children with tumours, so seek them out. It might help a little.
I was 12 years older than your son when I too experienced a couple of gran mal seizures. I was eventually diagnosed with a grade II Oligodendroglioma in my left frontal area just 4 months after I was married. The tumour was dangerously close to my motor and speech areas so they wanted to operate; which they did 6 months later. The only side effect I had (and still do) is epilepsy. Mine are also controlled (mostly) with Lamictal but I take a total of 625mg per day.
After the surgery they took the ‘watch and wait’ approach with MRI’s. Apparently this is a standard procedure for low grade tumours. The surgeon told me that when a patient is first diagnosed, it’s not about how slow growing the tumour is, or how big it is, but WHERE it is.
I am pleased to know that your son’s Neurosurgeon team is very good, but he still NEEDS answers. In my experience it’s a case of ‘ye who shouts the loudest’ gets heard; after all, they are not the ones suffering. Be bold, press on, be heard!
I will be thinking of you all. Please let me know how you get on.
With my very best regards, Andrina

the_liz_army said:

Left parietal lobe with ambidextrous person
Hi, Deb.

Thanks for sharing your story (you too, OCMenno).

Presenting symptoms:
My only symptoms were two grand mal seizures (the crazy, flailing, unconscious type).

Affected lobe:
Left parietal

Seizures:
Since the tumor was in my left brain, seizures materialized on the right side of my body. I've had three grand mal seizures, and a myriad of partial seizures. After I was put on anti-epileptic drugs the seizures settled down and varied from visible jerking of the limbs and chest (motor seizure), to having my entire right side loose the sensation of touch (sensory seizure), and a coordination seizure where my right hand would be unable to judge the distance of objects in space and grasp them (similar to what you were talking about, Deb). Partial seizures lasted as long as 20 minutes (in a Starbucks!), to 20 seconds. Thanks to drugs and surgery my seizures are controlled and no longer freak me out!

Handedness:
I am ambidextrous.
If you're right handed and your left brain is affected, after surgery you may have problems with speech/writing/calculation. The opposite is true if you're left handed. This presented a problem for doctors and me ... we didn't know which lobe contained my communication and calculating skills.

Treatment:
Craniotomy, 9/17/08
Craniotomy, 2/6/09
Temodar, began 3/2/09

Effects of treatment:
* depth perception: only noticeable when I'm going down stairs
* balance (vestibular system): I have a hard time staying balanced if my eyes are closed
* sensory perception: I have minor sensory loss on the right side (things just feel different)
* awareness of your body in space (proprioception): this is noticeable about once every other day; I'll move my hands to do something on autopilot and as soon as my right hand comes into view I'm startled for a second, wondering, "Who's hand is that?"
* language skills: not affected
* writing skills: not affected
* calculation skills: not affected

After surgery:
Sensory strip was slightly affected, motor strip is fine.

It has been a month since my second brain surgery and I feel fine! I left the hospital moving slowly with a cane, and I ditched the cane about two weeks ago.

I'm happy to be here.

Liz

new diagnosis..all in theory
have been having worsening migraines for about 18 months. lasting longer, and for last year has involved neurological symptoms.
Have numbness during headaches - generally all LHS head.face. neck.
And speech is difficult - like having a few drinks and trying to sound sober??

migraines generally on LHS eyebrow area, now also happening on RHS eyebrow.
And have occasional shooting electric impulses into head .

(this may be totally irrelevant but at time Right foot randomly reflexes/jerks?


One of recent migraines lasted 10 days - so was referred for MRI.

Results showed transverse cyst in high parietal region LHS.
Being referred to neurosurgeon.

Help?
Disassociated during appointment...so asked NOTHING!. was delighted they had found a reason for migraines .

Helen