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PostPosted: Thu Aug 28, 2008 11:54 am 
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Hi

I am the mother of a five year old boy diagnosed with a brain stem glioma grade 2 in May 2008. Fully encased within the brain stem a biopsy was carried out on the 31 July and the tumour has been declared inoperable by four experts - two neurosurgeons, an oncologist and a radiation doctor. They go as far to say if it were to be operated on my son would never be the same again. He would have major damage.
The four experts are very strong on this issue. They say radiation is the only course of treatment because of tumor position and grade 2 pathology.

However, Dr Teo upon consultation and examination of the scans strongly recommends the tumour be removed. He says he has operated on tumours worse than my son's and they have been successful. There is no doubt in my mind after reading forums that Dr Teo is a great surgeon.
He has outlined the risks in this surgery and there is a 1 in 5 chance of a major deficit or death. Of course these are just numbers.

My conflict arises from the strongly clashing opinions.
I read with interest many other members of this forum have experienced the same conflict. As well as dealing with conflicting medical advice you are told to make up your own mind. With many well meaning people also pushing their own opinions upon you only complicating matters!

Perhaps it is easier if it is just an adult making the decision for themselves. When it is a child who is currently very happy and can move and play without any disability to think you could agree to surgery and possibly cause disability earlier than the tumours advancing effects is terrifying. It has been suggested that although Dr Teo has actually said he can "cure" the tumour this may not be the case as residual tumour will likely be left to regrow. The tumour is infiltrating throughout the brain stem and up to the pons wrapping itself around the nerves. However it does present mostly to the left hand side of the brain stem but it is also deep within the stem as well.

Being a sole parent the course of treatment and the effects of any treatments become my responsibility.

What are members opinions on quality of life and treatments?

Surgery if you knew with certainty of a successful outcome does present like the best treatment. Without a doubt if you were to have surgery Dr Teo is the surgeon to go for thank you to all of those on the forum who have related their experiences thus far.

My problem is though how on earth do you make a decision with such strong opinions from experts saying a most definite NO. Should there be any major "deficits" from this surgery I will have it on my head, as all advice was not to proceed.

Yes we do have a family history of brain tumour. In October 1999 my then also five year old son died of the same diagnosis. A brain stem glioma also a grade 2 on biopsy but on resection it had a higher grade core. He had resection under Dr Vonau it went well it just regrew. He had radiation after that it all seemed Ok. He died 4 weeks after this contracting a virus which led to demylineation of his entire brain literally overnight. I do not believe my judgement is clouded by this experience however I am also non the wiser I think for it. All tumours and cases are individual the issues are often similar though.

Therefore, my conflict seems to be quality of life or surgery (weigh up the risks and hope for the best). All opinions very much appreciated.

Thanks,

Mumoftwo


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PostPosted: Thu Aug 28, 2008 9:04 pm 
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Sorry to hear your 1st little boy died of an infection after treatment (that’s the worst possible case scenario and risk and it’s probably of no consolation to know that it’s not common when it’s someone you love that you’ve lost). Doubly unfair you've got another boy with a brain tumour (too much for any mother to have to go through once let alone twice so your distress is understandable and that doesn't help when you've got to make decisions and take in conflicting opinions etc).

You mentioned he had surgery and that went well (up until the infection came into the equation). I guess like with everything treatments and post-op care etc has improved a little in 10 years so undoubtedly that risk have been reduced as well.

Teo would be careful and in terms of how much of the tumour can be removed safely I’m sure he’d consider quality of life in making that decision. It may be that partial removal (ie. they leave a little) which he does at times he thinks that going any further is far too risky etc and they can then use stereotactic radiation therapy on the residual tumour which makes it a combination treatment.

Stereotactic radiotherapy is better than the older forms of radiation (and has been around for around 7 years now I think). However even that has some risk of deficits. In the US they call it gamma-knife and after talking to Teo and doing some of my own research, I accept that there is some risk with that treatment as well as it’s at the skull base where all the complex structures and nerves are and radiation can damage those as well although they tend to use lower-dose these days to minimise that as much as possible.

I also recall Teo telling me during my visit that radiation can damage brain cells longer-term. Some patients who had radiation therapy many years prior to seeing Teo were sleeping 18 hours per day (only radiation as treatment years prior) so the question of quality of life does come into the equation with all treatments. Unfortunately there are no “quality of life” stats on treatment types/tumour types/tumour grades/location etc so it’s going to be up to you to decide what you think is best for your son and yes, facing the same range of conflicting advice we’ve all had to deal with. You’ll just have to go with your own gut feeling after gathering as much info as you can and no-one else can make that decision for you. Don’t distrust his advice just because other neurosurgeons don’t specialise in skull-base surgery. As far as the brain stem is concerned, he’d go in as deep as reasonably safe and knows the terrain. Personally, if I were you I'd go with his advice on this one and he'll look closely at biopsy report before making any recommendations as to additional treatments etc (depending on grade confirmation on patholgy report after surgery)

Here’s one article that talks about varying locations in, around brainstem, grade, prognosis, treatments and while it says that surgery for “intrinsic gliomas” is not “routinely recommended”, the tumour grade may also be a factor and it eg. in some cases be better to remove it (or as much as possible) before it goes a higher grade. Then supplement (zap remaining tumour) with stereotactic radiotherapy if/when it starts to re-grow. The prognosis when considering it’s currently a grade 2 improves overall chances as compared to say one of a higher grade. The article also mentions that brainstem gliomas in children are generally more aggressive than those in adults. If you have it treated with stereotactic radiation therapy first then it may fuse to the brain stem even more making it harder to remove surgically if the radiation therapy doesn’t stop it growing and it starts up again either immediately or in a few years. There are risks regardless of which treatment option you opt for. Some people appear to have done well with gamma-knife (or stereotactic radiotherapy) although these articles never go into quality of life or deficits left. Some others died anyway.

Brainstem Gliomashttp://www.emedicine.com/neuro/TOPIC40.HTM

Gamma knife surgery for focal brainstem gliomas.http://www.ncbi.nlm.nih.gov/pubmed/17236482

Gamma Knife radiosurgery of brainstem gliomas.
http://www.ncbi.nlm.nih.gov/pubmed/12379009?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DiscoveryPanel.Pubmed_Discovery_RA&linkpos=4&log$=relatedarticles&logdbfrom=pubmed

Re: Radiation. The article below talks about “ear tumours” but basically they’re in the same area ie. skull base where “ear tumours” are located as well as the “brain stem”. There are 8 facial nerves there in total that control different functions from eyesight to hearing to facial muscles to swallowing. There is also a risk that radiation may cause swelling of the surrounding brain etc so they don’t seem to tell you all the risks concerned with radiation therapy and basically count it as successful if the tumour doesn’t grow any more rather than “quality of life”. Deficits from that may depend on which nerves may be damaged with the stereotactic or gamma knife) radiation. Lower dose is safer but still some risk.

Wishing you all the best (and hopefully the tumour is not a higher grade deeper within) and maybe that' why Teo would prefer to remove as much as possible as they can change later on as well if left. I've not heard of radiation curing gliomas indefintely but if anyone on the forum has some longer-term results on that for grade 2 speak up.

Gamma Knife on ear tumours
http://www.dizziness-and-balance.com/treatment/gamma%20knife.htm
....Facial nerve function is "preserved" in 100% -- meaning that it still works - -the author of this page has observed patients who develop facial twitching post gamma knife. Trigeminal nerve function is preserved in 95%.
....In early studies where large radiation doses were used, delayed facial weakness, and facial numbness occured in roughly 1 third of patients after gamma knife. From the University of Pittsburgh series, an average dose at the tumor margin of 13 Gy units controls the tumor in 97% but with minimal (1%) facial nerve and (2%) trigeminal nerve disturbance. Doses of 16 Gy resulted in much higher rates of facial nerve disturbance (31%) and trigeminal disturbance (27%).
...Patients are typically followed with periodic MRI scans for the remainder of their lives. Tumor is "controlled" about 98% of the time with gamma knife. Hearing tends to gradually decline over several years in the treated ear. (Kaplan et al, 2003; Wackym et al, 2004). Vestibular function tends to worsen substantially in the first 6 months and remain stable thereafter (Wackym et al, 2004).
....If surgery is eventually required after gamma knife, surgical complications in this situation such as severe facial nerve weakness are nearly 100%. Surgery is much more difficult (Limb et al, 2005). This occurs because the facial nerve often becomes "fused" to the tumor.
....The author of this review, while not a surgeon, does not favor high-dose gamma knife because of the possibility of radiation complications at 2 years and beyond. However, low dose gamma knife is looking much better and there are certainly many times when it is the best option. Lower doses of radiation (e.g. 13 Gy) are presently advised because of the much lower risk of facial weakness and numbness (Wackym et al, 2004).
....An interesting consequence of the low-dose protocols is that patients are now seen who do not have complete loss of hearing or vestibular function after the radiation. In some cases this can be annoying as it may result in nerve irritibility symptoms such as hyperventilation induced nystagmus. Here the nystagmus beats towards the lesion (unlike vibration induced nystagmus which beats away from the lesion).
....All radiation is damaging, and the Gamma Knife is no exception. The beams of the gamma knife traverse normal tissue, and consquently damage normal structures. All radiation treatments also tend to cause late complications -- years later, patients develop facial twitching, facial numbness, or other symptoms that are more likely to be due to radiation than tumor growth.


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PostPosted: Thu Aug 28, 2008 9:51 pm 
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Hi Mumoftwo,

I'm sorry to hear about your son. It seems so dreadfully unfair when anyone gets a tumour let alone a child. I can't begin to imagine the stress you must feel having to make such an awful decision.

What did Teo have to say about having radiation treatment? I know when Teo saw me, he wasn't to keen on me going down that path. His explanation seemed to ring true and I went with the surgery. I just didn't want to have something turn up in 18 months time but my decision was made by me in consultation with my wife. At the time, I felt there was a good chance that I was going to come out with a deficit of some sort. I also knew there was a possibility that I would die. In retrospect, that seems over the top, but it is how I felt. I made the decision because I felt that Teo was going to do as good a job as he could and would take responsibility for what he did. Others didn't give me the same confidence. I am not saying they weren't as good. I will never know. I just felt better with Teo than the others.

One thing that I did notice when I was trying to find a specialist is that recommendations came from people who had successful outcomes. I guess you expect that (which is what I am doing). I made my decision on what the specialists told me in terms of what they could do - not just on what the numbers say they could do.

I hope this information is helpful with your decision.

Boris.


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 Post subject: thanks for replies
PostPosted: Fri Aug 29, 2008 1:02 pm 
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Thank you Mary and Boris for your information.

We were due to have stereotactic radiation now. Dr Teo has not mentioned having this as he is counting on removing the entire tumour.
That is why I have been anxious.

The radiation oncologist has said radiation after surgery will depend on how my son is after surgery.

Surgery is scheduled for the 8th September.

I will keep you informed.


Many thanks.


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PostPosted: Sat Aug 30, 2008 12:41 am 
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I don't have anything to add; I'm relatively new to all this. I just wanted to send my thoughts and prayers your way.


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 Post subject: update
PostPosted: Mon Sep 01, 2008 11:50 am 
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thanks dcricket for you thoughts and prayers.

Boris and Mary have provided a wealth of information and help in relating their experiences.

It is so reassuring to know that we all have the same concerns and experiences. When we have so many questions and the answers are not simply forthcoming or easy to fully comprehend. Often it comes down to just thinking about the choices and their outcomes.

Of courses everyone will have their own take on what outcomes they find acceptable. Many have said it is simply a matter of getting your mind around the situation and that is very true!

I feel a lot calmer now and Daniel is well. He has had the situation explained to him in a simple way. He is functioning very well with only a little lack of movement on the left hand side of his face which surprises the medical people because of the tumour. That has been why I have been relunctant to rush into surgery currently he is really enjoying life.

Thanks every one,


Sandra
Mumoftwo.


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 Post subject: Daniel's doing great!
PostPosted: Sat Sep 13, 2008 7:17 am 
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Daniel has had his surgery on the 8 september and it has gone very well.

They were able to get out 95% if not all of the tumour they say.

He has lost two nerves 7 and 8 and hearing in the left ear.

At the moment he is out of ICU on the ward and moving well. Sitting with support and able to understand what we say. Not talking yet or able to eat but progressing very well getting better every day.

Biopsy shows the tumour should not grow back.

So all around very good news!

Thanks for the support all!



Sandra


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PostPosted: Sat Sep 13, 2008 11:53 am 
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That's a fantastic result! Ok he has some nerve damage, but all things considered.

Of course, you'll be focused on his recovery over the next few weeks. I hope that you get a chance to relax and de-stress too.

Neurobics is the only way I know of to regenerate brain cells, though not specific nerves. That Daniel is so young will help.

I wish you all the best. Don't be shy about staying in touch, you may even be able to help others in a similar situation :o). We'd love to hear how he is going.


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PostPosted: Sat Sep 13, 2008 1:58 pm 
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I'm so glad to hear that things went well for Daniel. I was getting worried having not heard anything after the 8th but was hoping it was the usual post operation stuff. It is a fairly significant bit of surgery and it sounds like Daniel is recovering well. Lets hope things just continue to get better as I am sure they will!

Boris.


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 Post subject: Wow - great news.
PostPosted: Sat Sep 13, 2008 8:24 pm 
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Sandra,

That's great news. Thanks for letting us know. It must have been a stressful time for everyone and especially you, given the history. Daniel has done well in such a short period of time and with a bit of time to rest and recover, I'm sure he'll continue to improve quickly. He has his life ahead of him now with an all clear as far that that nasty invader the tumour is concerned especially given the location of this tumour that's a great outcome so far. Being so young, I'm sure he'll be able to compensate for some minor deficits as far as those 2 nerves are concerned as he grows and I gather they are on one side only. All things considered, a great outcome. I hope you're OK. No doubt a bit overhwhelmed by it all and emotionally exhausted from all the worry so it might be time for some rest and recovervy for you both. Let us know how things progress when you get a chance and give a big hug to Daniel from all his friends from this support group site and tell him we're all hoping he gets well soon.

Mary


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 Post subject: 14 sept update
PostPosted: Sun Sep 14, 2008 9:10 pm 
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Hi all,

Kenobewan you are so right on the ward we are already meeting people in the same situation we are/were!

Without knowing there may be a different path to take they are going down the same track we all have been following.

I have informed them of this site and also the options we explored. So at least they may make a choice. Most have the information "overload" phenomen we have all experienced.

Dan is today continuing to improve - not quite talking yet but not far off.
Sitting and standing with assistance and very keen to eat. Not allowed to have food yet though has not got swallowing covered but soon will.

Looking at transferring to local hospital in next week or so to be closer to home while he regains strength. Neurobics? is this just stimulating the brain and exercising any more advice on this?

Now its rehab and moving on. Still so many new cases out there. We really do no know just how lucky we are/were!

Best wishes to all.

Love
Sandra


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PostPosted: Mon Sep 15, 2008 9:36 pm 
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I am so glad you feel that you may have the energy to help others.

Appreciate the information overload, it takes a long time to get your head around it all. I posted on Neuroplasticity, given his age and likely development this may not be as important. However, if he is showing deficits like his talking that are taking longer to come back I believe that he could benefit.

For any adults it is a must. He could suffer memory deficit if he had corticosteriods or radiotherapy.


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 Post subject: Daniel's update
PostPosted: Wed Oct 15, 2008 10:56 am 
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Hello everyone,

Just an update on Daniel's progress.

It has been about six weeks since Daniel had his operation and he is progressing very well.

On no medication he is going to physio sessions about twice a week and is sitting and regained strength in his arms and legs.

Unable to stand and walk just yet he is working towards being able to hopefully soon. Daniel's sister and I support him by holding on to him under the arms and walk him around the house. He is trying to pull himself up to stand on some things now and is very determined when he wants something.

His speech is very good and his mind sharp!

He has a slight problem with his left eye being turned in as the muscles no longer work here as this was one of two cranial nerves removed. He is not supposed to hear from the left ear as this nerve was also removed but he seems to be doing ok is this regard.

All is quiet and almost back to normal as Daniel, Emma and I settle back into day to day activities. Daniel actually loves visiting the Hospital between therapy sessions, Fairy Sparkle's Garden, the Starlight room and visiting friends still on the ward he happily will spend hours there!

Due to have a MRI at the end of the month it will be interesting to see how it all looks now. Have not heard from Teo's team since leaving Sydney five weeks ago but have not had any problems either. Due to go back in early November for checkup.

It was interesting to see the Denton interview how accurate was that!
Who even knew you could remove cranial nerves like he did with Daniel.

Fairy Sparkle has also been great she rings him every night and sings the Get Well Song with him. Every day I'm getting better and better and everyday I'm getting stronger and stronger they sing and he does.

So that's it for now will let you know how MRI results go.

Thanks again,



sandra
Mumoftwo.


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PostPosted: Wed Oct 15, 2008 9:16 pm 
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That's great he's progressing so well. Its funny in the context, how we say to ourselves if he ends up an irregular eye that's a good thing.

We have our share of losses, but its great when one so young has a good result - makes us all feel good :o).


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PostPosted: Wed Nov 05, 2008 7:09 pm 
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One week ago Daniel had his 6 week MRI.

Yesterday we went to see Dr Teo and it looks like the entire tumour is now gone. Teo said "what a great resection. How clever am I!".

There was no severe or permanent complications. No medications and no swelling.

There is a tiny little white mark showing at the bottom of the tumour hole where the tumour has been removed from. This could either be a tiny bit of tumour or post surgical trauma. Teo has said a yearly MRI should be enough to monitor this. Our local oncology doctor wants 3 monthly MRI's but Teo said B*****it!!. So it appears he is very happy with progress.

He said he had not expected Daniel to walk for about 6 months. In the last week Daniel has really taken off. He is walking along walls and furniture ie holding on to things for support. He is also standing on his own balancing briefly usually like a surfers pose. He loves to get lots of praise and attention when he does this and says "I don't believe it".

He is really keen to get 'back to normal' and looks at old photos and says that was when I could walk. Only two things have significantly changed since surgery with Daniel apart from the walking. His left eye has been affected by the nerve damage - it can no longer blink normally and he has had an ulcer on his cornea. This has been treated with drops and antibiotic ointment and has cleared but has been red and cloudy for weeks. There will be a need for surgery on his eye down the track to prevent eye infections reoccuring. Will book in to see a neuro-opthalomologist soon.

The other change is his personality - he has become more aggressive and demanding. He is more inclined to throw temper tantrums and bite and throw things than before. Teo says child patients can regress. He said it is frustration and dealing with all the surgery and hospital stuff. He could get worse before it gets better. His advice was to treat him as normally as possible. Anyone else experieced this post op problem?

As far as the surgery goes though we have been extremely lucky. After having all the possibilities explained to us we were prepared for anything. The outcome has been extraordinary. The recovery process has just been positive progression all the way. Physio and OT continue about once or twice a week. He is in a wheelchair and will probably need that for long distance walking for the forseeable future but that is no biggee.

Hope this helps anyone out there trying to make the same decisions we had to make only a couple of months ago. Be aware anything can happen.
Make sure you are prepared to accept whatever outcomes are thrown at you but hope for the best. Worse thing anyone can do is force you into a decision.

We were told Daniel would die. Now because of Dr Teo's skill and preserverance in the face of opposition we have a healthy boy.

Thank God for Dr Teo.

It has been extraordinary.


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