ANA Discussion Forum
Watch and Wait => For those in the 'watch and wait' status => Topic started by: DodgeAU on July 18, 2019, 01:11:23 am
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Hello all,
I recently moved from Melbourne to Sydney AU. Appreciate if anyone has experience or recommend specialists to consult for monitoring or treatment of AN.
Best regards
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Hi DodgeAU,
Welcome to SYD, and to the world of AN . I did the rounds of many Sydney neurosurgeons a few years ago, before I decided on CK treatment in US. I now monitor my AN locally with Dr Ben Jonker (neurosurgeon), he works out of St Vincents in Sydney.
Happy to chat with you if you'd like to send a PM.
best luck
Stella
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Thank you Stella,
I have just attended a consultation with Dr Biggs also works at St Vincents in Sydney. I have also got my MRI one year after diagnosis. Unfortunately my AN has rapidly grown from 6mm to now 12mm in year. My next MRI is after 6 months and the Dr has told me to start thinking about treatment either surgery or radiation.
Besides tinnitus and hearing loss, no additional symptoms within 1 year after diagnosis.
I really want to wait and watch as long as possible before jumping into treatment but I'm not sure for how long.
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Hi DodgeAU,
I'm sorry to hear of the rapid growth, 6mm in 1 year is a lot more than the usual 1-2mm. It makes sense to be consulting for your next steps and Dr Biggs is a very well respected surgeon too. All the best for the next MRI, i know how stressful they can be.
take good care
Stella
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Hi Stella
Hope you are doing well!!
It's time for me to have a treatment because my left AN is still growing for the past 2.5 years. There is GK in SYdney but I have decided to go for Cyberknife.
The only Cyberknife in AUstralia is located in Perth, so need to travel. My GP has organised the referral letter to them and hopefully get consultation to their Dr's very soon.
Cheers
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Hi DodgeAU,
I just saw this message... Having a consultation with Perth CK sounds like a good plan, a little far but worth it, hopefully you'll have some cost coverage with Medicare if you go ahead.
have you heard back from them yet?
Stella
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I believe Cyberknike in Perth is fully covered by Medicare so there is $0 upfront cost for patients.
I had consultation with them and agreed to wait until June this year, and if there is significant growth - we are planning to do CK sometime before end of the year.
We are lucky in Australia to have this Cyberknife treatment free of charge for Australian residents :).
This machine looks fairly new and advanced I wonder of there are any people in the forums who has tried and experienced this CK in Perth.
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Hi Dodge I live In Perth and had Cyberknife at 5D Clinic - you welcome to contact me anytime. Mine was two and a half years ago...some shrinking no side effects. Mine was cystic and 2 cms.
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Thanks Michelle, I have finally decided to go for Gamma Knife instead. I am scheduled for Gamma at Peter Mac in Melbourne on 24 March 2022.
I am very excited at the same time bit anxious not on the radio therapy but on the fitting of the mask in the head :)
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Best wishes next month on your procedure, Dodge AU!
Help me to understand your anxiety with the mask. If I have GK, one place I'm considering uses the head frame, the other uses the mask. The idea of the pins in my skull from the frame is a bit unnerving to me,but what is your concern about the mask? Is it more claustrophobic? At some point I may need to make that decision. The doctors at both place I'm considering are excellent and have well-proven track records. It may come down to whether I want the frame or the mask. And I'm not sure I understand the issues with the mask?
Thanks!
Don
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Thanks Don, as for me they will be fitting a head frame like going to put some screws in my head with help of some anesthesia on the area. I think this is the most painful part of GK treatment as the radiation itself is painless I believe. The whole appointment and procedure will be from 6:45am to around 2pm but according to the staff the main treatment will only last half hour to 1 hour. The rest is like preparation including MRI, head frame fitting, planning, etc etc.
Mine had a rapid growth from 6mm at diagnosis 3.5 years ago, now it close to 20mm and decided that this is the time for treatment.
Are you sure they can use just mask for GK? Normally a head frame is fitted but if there is another option I would definitely consider it.
Let us know what you have decided to do.
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Hi DodgeAU!
Thank you for your quick response! I certainly understand your reluctance and anxiety about the head frame. From what I have read, that is actually the worst part of the GK procedure, but I am told that it really isn't as bad as it sounds. But then I have not experienced it either.
I do not know what is available in Australia, but CyberKnife has used a mask instead of a head frame for years. And some people have gone to CK for that very reason. So, the makers of Gamma Knife have noticed that and have that as an option on their latest model of the GK. I have had a consultation with a neurosurgeon at Emory University hospital in Atlanta, and he told me that if I have the procedure done there, they have the latest model of the Gamma Knife which I believe is the ICON, and I would have the mask, not the headframe. You have to used the headframe with the previous model, the Perfexion, and the other previous models of the Gamma Knife.
The other place I am considering uses the headframe, and the reason they state for doing it rather than using the mask is that they have wonderful results with the headframe which holds the patients heads perfectly for them. Using the mask allows a tiny bit of movement. The CyberKnife accounts for that, and I'm assuming the GK Icon does, too, but the other hospital does not want to introduce a new possibility for movement when they have had great success with the headframe.
So that is how I understand the two options for the GK at this time. Maybe someone who knows more or has experienced more can shed further light on it.
And again, my dilemma is do I go with Emory which uses the mask with the GK Icon, or do I go with the tried and true headframe which would not allow the slightest movement? I am still trying to decide, but my AN is small like yours was, so I have time to decide.
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I just checked with the hospital in Melbourne and yes they have the latest Gamma knife machine there, called Icon. They also offer both the mask and head frame that you have described above. I am trying to confirm with them which one are they planning for myself however my understanding is that the mask is used for multiple doses while the head frame is for the single dose of radiation but I could be wrong.
From recent appointment with the neurosurgeon, he told me that it will be single dose of radiation.
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I am so glad that the hospital in Melbourne has the Icon! So, you have a number of options. You can have the mask or the frame. And my understanding is that with the Icon, you can do a single dose or you can do fractionated (or multiple) doses. The Icon gives more flexibility over the previous GammaKnife models.
The head frame is used for a single dose. That is true. You really can't easily do multiple doses with the head frame as I understand it.
But I don't believe that having the mask requires that you do fractionated doses. If you are concerned about the head frame (and I could understand why), you should be able to do the mask with a single dose. But you probably should ask your neurosurgeon's office. I am sure they could give a definite answer there. You don't have to have pins in your skull for the mask, so that may cause way less anxiety for you.
I am eager to find out what will happen with you, DodgeAU! Keep us posted!
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Today 24/3/2022, I went to the hospital in Melbourne for the GK treatment.
First thing done was to get all my vital signs, then put an injection portal for the contrast to be used later. I also asked for calming tablet and for nausea as I was bit anxious when I arrived in the hospital.
Then I went to meet the neurosurgeon for head frame fitting. Here I was given injection for local anaesthetic on 4 locations in my head. Shortly I felt numbing in the four locations and they started screwing the 4 pins in my skull. I did not feel to much pain because of the anaesthesia but I started to feel the tightness in my head. But if pain and tightness here and there. The frame used was very light one and is plastic and not a metal.
Then went to MRI scan with head frame on.
Then went to CT scan with head frame on.
Doctors then analyse the results and there is misalignment on images. The neurosurgeon checked my head frame and found out that it moved a little bit. I notice it during the CT scan when they tried to attach my head frame into the bed and I felt pain.
Neurosurgeon has then adjusted my head frame and fixed it. I started to have head aches and was given an ibuprofen and it helped.
I was returned to do another CT scan because the first one was misaligned.
Doctors then planned the GK treatment and dose after getting all the results of the scan.
Then the main treatment occurred for about 30 minutes in the GK machine. It’s painless and very quite. I was given 12.5 Gy for the one shot of radiation.
My head frame was removed and out antiseptics on the 4 pin locations.
Headache is gone after they removed the head frame.
The procedure went very smoothly except for the head frame becomes wobbly when attaching to the CT scan bed.
Very relieved, and very thankful to the doctors at Peter Mac at Melbourne.
Now just resting in the hotel waiting for some hot Vietnamese food that my wife has ordered. 😃
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Excellent post, DodgeAU, describing your experience for those of us who are waiting to have GK and are wondering what it is like.
I'm so thankful that the procedure went well. I hope the hot Vietnamese food tasted as good!
I am anxious to hear how you feel for the next few days.
Thanks again for posting your experience!
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Thanks Don, hope you are doing well.
Loved the Vietnamese food especially in Melbourne!
Had a long sleep after the procedure probably due to the Lorazepam they gave to me 😊
Woke up with mild head ache, feels swollen on the puncture sites in my head so had to take some Tylenol for the first day after the GK.
Today is the second day and no more head ache but still feeling sore on the puncture sites though the wound starts to dry and heal. I use a neck support travel pillow when sleeping as this avoid contact of puncture sites which is pain when touching the pillow or bed head.
There is some numbing in some parts of my scalp and some tightness in my forehead - which are common symptoms after head frame procedures. From the hospital booklet, these symptoms should last within 1-2 weeks.
My balance is fine and just trying to go for walk for half an hour in the morning.
When I left the hospital they put some metal staples in one of the puncture sites to prevent infection. Now I feel it’s healing and I have to go to my local doctor in the next few days to remove them.
Now we are flying back to Sydney after 4 days stay in lovely Melbourne 😍
I’m looking forward to check the progress in the next 6 months and will going to update you all.
Regards
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Thank you for that wonderful update! It really helps those of us who have not done the GK yet know what we might expect (realizing, of course, that everyone's journey can be different. I will be looking forward to your next update!
Let me ask one question: How soon do you think you could have driven an automobile after your GK? I could possibly be driving, instead of flying, after mine, and I don't know how long to plan to stay in the hotel, and how soon I can plan to drive normally?
Thanks again, DodgeAU!
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I was able to drive after 53 hrs but only short distance (less than 40km / 25 miles) from airport to home (I left my car in airport car park). If you have someone to drive your car that would be much better.
I would not recommend driving long distance after GK, best to rest for few days (2-5 days) or until the side effects have slowed down or completely gone
How far do you plan to drive after the procedure?
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Thank you! You just convinced me to rest for a few days. I was planning on driving 1,000 miles or 1,600 km from where I had planned to have my GK to my home. But now I realize I will either need to rest a while in a hotel or fly back.
Thanks for the reality check!
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Hi everyone, hope all of you are doing well!
I have an update few months post GK procedure.
2nd month: mild side effects of the GK have disappeared, but left 2 small scars on my head. I barely noticed them only when I go for a skin fade haircut :)
5th month: mild facial spasms on the AN side, max 3 times a day for 5 secs each lasted for about couple of weeks. I was told by Oncologist that it was typical result of the AN due to inflammation. They gave me steroid but did not take them as it was very mild.
6th month: MRI showed 2mm reduction in size (no growth) which is good news!! Thank God.
Life goes on. Next MRI is after 1 year (September 2023).
So far no other symptoms aside from pre-GK ones which are mild tinnitus and total hearing loss on the left (AN) side.
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Hi DodgeAU,
So glad to hear that you are doing well!
wishing you the best that life has to offer as you continue on your healing journey
Stella
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Hi Stella
Hope you are well. Just want to give an update on my side post GK treatment. I am happy to say that my facial spams on the AN side has totally disappeared last June 2023. Now I understand that the facial spasms were caused by swelling of the AN post GK as side effects.
The latest MRI in September shows shrinkage of the AN by about 2-3mm. Will be continuing monitoring yearly for the next 4 years. Looking forward to the next phase of my healing journey.
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Thank you for that great update!
Blessings upon your continued recovery!
Don