ANA Discussion Forum
Treatment Options => Radiation / Radiosurgery => Topic started by: SP on April 02, 2016, 04:05:16 am
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Firstly I am grateful for all your stories and experiences as I have spent much time on this discussion board, but up until now posted very little. Thank you for the kindness I have personally received from many of you...sunny (who kept in constant touch, especially while I was in Palo Alto), CC (an Aussie in the US, Cathy %u2013your emails were so kind), crivers (Cayce, my US friend that lives in Perth, Australia %u2013 lots of great support), Paul W (thanks for taking the time to chat), fbarbera (Francesco offered me generous support, and also he has tonnes of information on his CK experience at Stanford see: www.myacoustic.org) and to many,many others I have emailed and spoken to, you were all very generous with your time, when I especially needed it most. Importantly I have my amazing husband, who bravely holds my hand & travels this whole journey with me.
It%u2019s taken me a while to work up the courage to accept the reality of my situation (perhaps I was in some form of denial) and share my story; here we go:
My AN story began with a shock diagnosis on the 4th March 2014 ; post an MRI at St Vincent%u2019s Hospital in Sydney %u2013 it was about 1pm when the test was completed; and I was told to wait in the small waiting room outside the MRI room.
Next thing I know I%u2019m sitting with a radiation specialist as he explains to me I have a tumour in my head & they had gone to get my husband to come join me to hear the news. This is all I hear....it%u2019s benign, it%u2019s big (approx 3.0 cm), it must be treated.
At this stage my symptoms were....tinnitus (I had 2 years of GP%u2019s telling me there was nothing they could do for this %u2013no further testing advised) and then my main symptom manifested, it was numbness from the left hand corner of my mouth spreading over my whole left cheek right up to my left eye. So after this symptom I was sent to a neurologist, to the above mentioned MRI and then the neurosurgeon. I took it upon myself to also see another neurosurgeon and another neurosurgeon... etc... looking for alternatives to brain surgery. My rationale was that apart form the above symptoms, I felt fine, I was overall healthy, my hearing & my balance tested great.
In summary I was consistently told that the recommended treatment (surgery) would result in: 100% chance of hearing loss in my left ear,(based on translab surgery); 30% chance of facial palsy %u2013 how bad they didn%u2019t know, 30% chance of hydrocephalus, possible stroke, infection etc etc and also 1% chance of death. Oh and by the way, they thought they might get most of the tumor out or just some %u2013 it all just depended.
For some reason I refused to accept that surgery was the best option for me %u2013 even though approx 5 different neurosurgeons in Sydney and 2 from Europe told me that was the way to go. The gamma knife people in Sydney have only been there for a few years, so I felt hesitant about their level of experience, anyhow in the end they said no, and there was one Cyberknife in Perth (even newer than the GK set up) %u2013 also said no- based on the size of the tumor.
So after much heartache, mountains of research, acupuncture, herbal medicine, meditation, scientific debate, & refinancing the mortgage, I decided to have CK treatment with Drs Chang & Soltys at Stanford in August 2015.
So here I am 6 months later ... here is the update:
After my 6 month MRI (24 Feb 2016) & Audiology testing, the results are:
Size: 3.2 x 2.5 x 3.0 cm
The good: size unchanged, necrosis of tumor (darkening on MRI) ;D
The bad: hearing significantly declined in left ear (detected by audiogram) :(
The worst: Enlarged fourth ventricles = communicating hydrocephalus ...this showed up in the MRI as described below: ???
%u201DThe MRI scan also showed that the ventricles (the fluid filled spaces) in the brain are slightly larger than before. This can happen in acoustic neuroma patients since the tumor (alive or dying) can secrete protein which can alter the cerebrospinal fluid absorption in the brain.%u201D
Dr Chang says: %u201CIn general, the fluid does not go away on its own. The best scenario would be no further buildup of fluid and no clinical symptoms.%u201D
I now sit and hope it doesn%u2019t get any worse, so among other things, it doesn%u2019t affect my left eye. I am now also seeing an ophthalmologist because of the hydrocephalus, I am at risk of papilledema, see definition here: http://www.hydroassoc.org/papilledema-vision-loss-and-hydrocephalus/.
Next steps: another MRI and another ophthalmological exam in early May 2016.
I hope (& pray) that this issue somehow resolves itself and that further treatment won%u2019t be needed (ie an operation to insert a shunt).
I%u2019d love to hear any thoughts on managing /reducing communicating hydrocephalus and the associated symptoms (nausea, headache, blurry/double vision).
I am currently resting a lot, working less, & trying to stress less & eat /sleep/exercise healthily.
My best,
Stella
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Thanks for sharing. Your husband sounds like a terrific guy.
Some patients with hydrocephalus have a dramatic improvement after a single lumbar puncture. The problem is that many patients who show no significant improvement from a single tap do show a benefit with extended CSF drainage during which 300-400 ml of CSF can be drained over 4-5 days in the hospital.
Extended CSF drainage, therefore, is more sensitive - it identifies more patients who will ultimately benefit from a shunt, and it has fewer false-negatives - it doesn't miss the patients who don't respond to a single large volume tap.
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Thanks for the fast reply & info-- I had not heard of this procedure to address hydrocephalus.
I'll be sure to mention this to my neurosurgeon on next appt.
Wishing you a healthful recovery. S
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Follow up MRI's at short intervals are needed in your case. Although I believe you will know, (feel) if the hydrocephalus gets to a point where you need some emergency treatment. The size of the AN is pushing the limits but has been done successfully before with others. The big issue as you know is if it swells, the complications of hydrocephalus can rear up and that's serious. Positives though are, it hasn't swollen yet so probably won't and that although with larger tumors the success rate is lessened it is still very high odds that it will kill off the tumor. The tumor will shrink some as it dies. It collapses in on itself and dries up for lack of a better term. This should help with reducing any hydro complications. Again, if your 6 months out and it hasn't changed that's really positive.
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Hi Rupert,
thanks for your comments... Yes indeed the positive part is in fact the tumor itself is still the same size ie not swollen; at least not enough for the limits of the MRI machine to pick up, and showing darkening (necrosis). However this form of hydrocephalus is apparently formed by the protein secretions from the tumor (alive or dying) building up in the ventricles and interfering with CSF re -absorption. I'm hoping it doesn't become a bigger issue too.
wishing you good health S.
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Hi Stella,
I am planning to fly from Sydney to Munich to receive CK treatment soon. Do you think the long flight post treatment have some impact on your recovery?
thank you very much
hope you feel better soon.
KJ
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Thanks KJ! -- I posted a reply to your Q on your new thread https://www.anausa.org/smf/index.php?topic=22646.msg979769791#msg979769791 -- hope this helps.
feel free to contact me if you have any more questions
Stella
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A quick update here...
The May MRI showed no worsening of the original communicating hydrocephalus -thank goodness. In addition the cystic part of the tumor has collapsed which makes the overall dimension smaller - yiay ;D :)!
My local neurosurgeon was happy to wait 6 months for next MRI... but i will be doing my next one in August so I have clear 1 year results to send back to Dr Chang for assessment.
I'm much less fatigued than I was a few months ago and also have less headaches too; this latest good news has helped me to keep a positive mindset too.
Keep well,
Stella
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I believe diuretics may help hydrocephalus.
So something simple like a few cups of tea a day may help.
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Hi Paul,
Thanks for the tip ! & hope you are keeping well.
S
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Have a friend who has had hydrocephalus after GK on a 3.2cm tumour.
I believe as the tumour dies it can give off proteins which end up in the CSF. This can thicken the CSF making it more difficult to flow/drain
By drinking more and taking diuretics their CSF pressure dropped...
They were going to get a shunt... but managed to avoid it...
They had a series of lumbar punctures to reduce their CSF levels. The analysis of their CSF did show high levels of protein.
Maybe worth asking a medical professional for some guidance on getting CSF pressures down without a shunt.
Just keep in mind that high CSF pressures has some serious consequences and can lead to blindness amongst a lot of other things.
So anything that can be easily done to reduce your risks would be worth considering.
Getting a shunt maybe annoying but its better than losing your eye sight.
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Thanks Paul !! I really appreciate your inputs here - as so far I've had minimal success in finding non-surgical approaches to addressing communicating hydrocephalus.
I've been having regular checks with an ophthalmologist to monitor any impacts to my eyes, particularly the optic nerves (both sides can get affected) ; i"m at the higher end of the normal range at the moment.
I agree, if a shunt is needed its needed and so I'm keeping very regular checks with my neurosurgeon - another MRI in a couple of months...
take good care
Stella
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Hi Stella,
Thank you so much for sharing your story! I read it as I was trying to make a treatment decision for my 2.5cm AN. I just returned home last night from CK at Stanford with Drs. Chang and Soltys and noticed that my treatment was exactly a year after yours, down to the day. Just wondering how you are doing--I hope the hydrocephalus has continued to be under control. I would love to know the results of your 1 year scan when you have it!
Best wishes,
Carrie
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Hi Carrie,
Thanks so much for your post - sorry i just saw this- I usually get notified via email on responses...
Congratulations on completing your treatment!!!- I hope the team took good care of you & all the best for your continued healing ahead.
Yes its been just over the 12 months and I have just completed my MRI and audio gram. I was waiting to get my feedback from Dr Chang before posting my update, but here is the status so far...
after having my results reviewed my local Neurosurgeon , he is happy that the hydrocephalus is stable :) and also I no longer have the wooshing sounds going on in my head (although the tinnutis is still there). The tumor is stable in size (ie no shrinkage), but as before shows signs of necrosis. Unfortunately my LHS hearing has further declined - it's fine for one on one conversation, but gets bit tricky in noisy environments - I guess that's the least of my worries for now- I'm pretty happy to have dodged surgery twice :).
Keep well
Stella
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Hi Stella!
I had a right 3cm AN diagnosed mid-year with GK done on 26 July.
At this time point, I still have times of "wooziness" and what's more troubling, is a loss of my tasting ability! I can taste the individual flavours ( salty, sour, sweet and bitter) but am COMPLETELY unable to blend all of them together so food tastes just blah and I've had to ask my husband and kids to taste my cooking so as to be able to season right...
Did this occur to you? I'll be happy to hear what anyone else has to share on this post-radio surgery.
Thank you so much,
Elsy
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Temporary solutions for hydrocephalus
http://www.sophysa.com/en/page/what-are-the-treatments-to-control-hydrocephalus
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Hi Elsy,
Congratulations on completing your treatment !!
Yes indeed, my tasting definitely was affected; so sometimes the seasoning in my cooking was/is a little off -usually not enough ; so its easy to add salt & pepper etc at the table... the good news is its getting better all the time, so it's possible that it is a temporary thing for you too..
Stella
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Thanks Paul!
That's a great link, haven't seen that before...though both of these options don't sound all that appealing.
Do you have any tips on dealing with Tinnutus? it seems to be getting louder in the AN ear (along with a decrease in my hearing) ; mostly bothersome at night when I'm trying to sleep.
thanks
Stella
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Hi Stella!
That's a comfort!
Thank you and I hope your tinnitus gets less noticeable as all the literature suggests.
All my best to everyone on this very helpful site,
Elsy
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Speaking for myself and my severe tinnitus (formerly suicidal tinnitus at the beginning), I use the WIDEX hearing aid with the "ZEN features".
The WIDEX hearing aid has musical tones that it puts in your ear to retrain your brain, as well as a "buzzer/masker/swooshing sound" to straight up block the tinnitus.
And of course it also is an excellent stand-alone hearing aid.
I mainly use the stand-alone hearing aid feature which I set very high, or I find myself using the masker.
I rarely even use the ZEN musical tones.
For sleep issues, speaking for myself, I use the lowest possible dose of Xanax (0.25) on an AS Needed basis, which works wonders.
Best wishes.
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Thanks mcrue!
Yes at the last audio gram I did , I had a discussion with the audiologist regarding a hearing aid "that's also good for tinnitus" ... although i haven't pursued the hearing aid option as yet , I think it may be useful for me.
I was mainly holding off until things "stabilized"; which I'm told could be 2-3 years (I'm at 1 year post CK now)... I'll mention this one to him at my next appointment - thanks again.
Hope you're going well
Stella
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Thank you,
There are many microsurgeons who won't recommend radiation for tumors over 1cm. It's great to see several AN patients presenting with 2.5 cm, 3.0 cm, and 3.2 cm tumors who have opted for successful radiation treatment with world-renowned radiosurgeons.
Each case is unique, but this just shows you should get as many qualified opinions from as many top surgeons as possible before making the final decision....and then follow your instincts.
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I thought I would post an update on the 12 months post CK results from Stanford & local tests. Ok so overall I am doing very well, in summary:
From Stanford:
The acoustic neuroma lesion appears slightly smaller on the scan.
The acoustic neuroma measures 31 mm x 29 mm x 28 mm. (originally Size: 3.2 x 2.5 x 3.0 cm )
No change in the cystic component, no change in ventricle size, and the necrosis is still present in the center of the tumor, and is unchanged. Dr Chang has no concerns at this point. Good news!
Local Tests:
Hearing in LHS declined (was all good before CK)-- they wont put a % loss here, but chatting in groups/ cafes is challenging.
Enlarged 4th ventricles that appeared in Feb 2016 (6 months post CK) -still there- but stable.
Opthamologist results-- eye pressure etc at the high end but stable - no better, no worse - a good sign as things are stable.
My observations:
Tinnitus about the same as at the start (or maybe I'm just used to it - except at night).
Facial Numbness about the same (or maybe I'm just used to that too).
Balance a bit wonky sometimes (was not an issue before CK).
Sleeping better (less stressed out about what to do, as it's done).
Next Steps:
next MRI is due Feb 2017
I'm aiming to stay as healthy and as positive as possible. I've also been making some life changes to simplify my life and be grateful for the good things I get to experience every day.
Cheers,
Stella
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Fantastic Stella. That is most excellent news. Your tumor is stable/shrinking with necrosis. So far so good!
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Great news Stella. Congratulations!
Lilith
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Thanks kindly Mcrue & Lilith ! :)
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Stella,
I'm also in Sydney and leaning towards radiosurgery. Once Stanford agreed to treat your tumour, I would have thought that the Australian institutes would have also agreed to to do it.
Also, is it expensive to get CK done at Stanford (probably not covered by Medicare or insurance).
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Hi AN Sydney,
To address your first comment -- not a chance -- my take on it is: since CK treatment for me was outside their realm of expertise they would not endorse it for my case.
Your second comment ---definitely not covered by Medicare or my private health fund insurance --- very, very expensive -- happy to discuss with you on this, you can email me via Private Message.
BTW -- we have GK at Macquarie and CK in Perth -- it may be worth investigating these first.
Stella
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OK so here's the latest from me @ 24 months post CK :
On Aug 30, 2017, it measured 26 x 29mm, which is actually slightly smaller! There was a cyst superiorly to the tumor, which is no longer visible.
The good news is I'm feeling well on most days. Although, my hearing has continued to decline on the LHS , I'm now the grateful owner of a Hansaton behind the ear hearing aid; which is becoming increasingly useful especially in groups or in cafes.
I'm happy that I don't have to worry about another MRI until Aug 2018! and given the latest info on the Gadolinium dye I requested if a no-GAD MRI would be OK; and my doctors have agreed :).
more info on that here: https://www.tga.gov.au/alert/gadolinium-based-contrast-agents-mri-scans
so far so good,
Stella
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Congratulations Stella on your good results.
I had my last MRI without gadolinium contrast agent and the images were OK.
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Thanks for your kind words ANSydney!!
I hope that you are doing really well. It's always interesting to read your comments and updates on this forum.
the advice i got from Stanford was that it was okay for me obtaining future MRIs without GAD contrast as long as the images include a sequence called a FIESTA sequence, so they can visualize the tumor well without the contrast.
My local specialist has confirmed that they indeed do this sequence at St Vincent's where i get my MRI's done.
I'm happy to wait again another 12 months, as over the last 3 years I've had about 10 MRI's.
Stella
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Hi Stella,
I'm doing very well. With someone with a large tumor and no treatment, it's somewhat unconventional.
I'm glad you like my posts. It's an interesting field to research. And in my case very pertinent.
My MRI was a T2-weighted turbo spin echo. I'll have to research how that differs from FIESTA sequence. (You'd think the radiologist would be the experts on getting the best picture!)
Good luck going forward.
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Here is the latest from me at 3 years post CK:
Tumor is stable in size at 2.9cm x 2.8 cm (no third dimension provided).
Hearing has shown further slight decline --- slight hearing aid adjustment to account for this.
Slight enlargement seen on ventricles, so a visit to my ophthalmologist is required to ensure there is no Papilledema :optic disc swelling that is caused by increased intracranial pressure due to any cause. I have had this checked before and was all OK.
In general I feel OK -- I try not to dwell on this tumor in my head most days -- except for this time of year when the check ups ramp up. So I manage stress by; spending more time in the sun, going to yoga, good nutrition and good coffee :).
wishing you good health on your journey
Stella
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Hi SP!
Woot! Stable in size! How pleased you must be for that aspect of your report?!
The slight hearing decline and slight enlargement of ventricles...not so much. Hearing is tough to lose. That's an aspect of this whole thing that never fails to make me a bit emo - I am sorry you got that news. But if you are feeling ok, that's good! Also, that you have had the slight enlargement before and all was well - history is in your favor. All will be well again! Keep enjoying the sun, yoga, and taking great care of yourself!
Sending positive vibes from LA ;-)
Jessica
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Thanks for your lovely support Jessica!!! L.A. good vibes sound great to me :)
some additional info from Stanford: ...this increase in ventricle size occurs in about 4% of patients, (similar to my case), due to release of protein. Usually, it's just incidental findings with no need for intervention...
I'll post my ophthalmologist updates after next week... fingers crossed ...
It's sunny here again today --- some Vitamin D therapy is due; a walk in the sun 8)
I hope that you are doing really well !
Stella
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Great news Stella, the tumor is stable. I am sure that is quite a relief, those MRI's cause anxiety in all of us. I guess a decrease in hearing is something we should not be surprised by. It is part of the acoustic neuroma challenge. Best of luck at the ophthalmologist appointment, hope all is well.
Gary
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You're welcome, Stella! :)
That additional news from Stanford is super. Confirmation that something happening is not unexpected is so reassuring, and even better, the word "incidental". Such a lovely, don't-worry-about-the-issue kind of word! I'd hang on to that one ;D.
Best of luck at the ophthalmologist appointment!
Also! I am good, thanks!! Thus far I've only had the one little blip. I'm super grateful to be able to ride, work, walk the dogs...whatever. I'll get a better idea in less than 2 months(!) when I finally get my 6 month MRI and hearing test. Hallelujah. I can't wait till I pass that milestone.
Glad to hear it's sunny there today - enjoy your time outdoors!
Jessica
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Congrats on your good news Stella! Here’s to many more years of good results and hopefully no further problems of any sort. You traveled a long way for treatment, but it sounds like it was worth every mile.
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Thanks for your kind words Gary! yes you're spot on the hearing; a challenge for sure, but I'm grateful for my little hearing aid; I hope that you are doing well and that your hearing aid fitting is a positive step forward.
Jessica-- thank you for taking the time to follow my journey -- I really like the way you focus on the positive , its a great reminder to me. It's great to hear that you are doing well ! how you feel is so important - It's a relief when when the testing milestones are done, I'll keep an eye out for your updates and wish for you the very best outcomes.
@ notaclone13, thank you kindly for your positive support! yes a long way to go but so grateful for the opportunity & support.
keep on moving forward,
Stella
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this latest update is another stress, but really nothing I can do besides follow the next steps...
Ophthalmologist test results: I have Papilledema which is optic disc swelling that is caused by increased intracranial pressure. The good news is I do not have symptoms of vision disturbance, headaches, nausea etc.
So now, I need to repeat the ophthalmologist testing in 4 weeks to see if its stable and then visit the neurosurgeon again to determine any next steps. Feels like a merry-go -round sometimes.
Stella
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Oh Stella. I am so sorry to read this news! What a disappointing, stressful thing to have to deal with. It is good news that you don't have any symptoms of the Papilledema, and I truly hope that this is indicative of it remaining stable. You have been through quite a bit (hydrocephalus is scary!) and made it though -- all will be well!
Sending you positive, healthy, stable Papilledema vibes from LA,
Jessica
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Thanks Jessica !! -- your lovely support from across the pacific ocean is so kind and much needed :) It feels like only AN people know what this journey feels like.... thanks for the LA vibes -- I'll keep you posted and hope you are doing well.
Stella
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I am sorry Stella, what a bummer that this is happening to you. Hopefully being symptom free means the Papilledema is stable and will not cause you any further problems. All of this is so darn frightening, it takes a tremendous amount of energy to remain strong and focused. Things will get better Stella, we are all pulling for you...
Gary
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Thanks Gary! - you totally get it... your supportive message means alot .
I'm really hoping this is another, "lets retest and then not worry about it" situation. although now I'm stressing about it I'm noticing every wonky sound or feeling in my head.
I remind myself: one day at a time and to focus on what I can do, so off I go for a 60min walk in the sunshine... hope you are keeping well.
Stella
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I've procrastinated about writing this post -- but acceptance of reality is part of moving forward so here we go... the summary for 2018 so far is:
06 August 2018 MRI : "stable left vestibular schwannoma but slight further increased ventricular size"
22 Aug Ophthalmology exam: "significant increase in optic nerve swelling" --this is papilloedema.
17 Sept another Ophthalmology exam: "papilloedema is stable" -- same as previous, ie its still there.
Ok so what does this all mean? The build up of fluid pressure in the brain (hydrocephalus) is what is causing the vision findings. The solution to this : surgery to insert a shunt to relieve the build up of Cerebrospinal fluid (CSF) fluid.
Next steps: I am very grateful to live in a major city and have access to the medical expertise of my neurosurgeon in Sydney, he is also really aware of my aversion to any surgery; that said, if it's needed there really is no other recourse. The good news (!) is I'm not exhibiting outward symptoms such as headaches, gait disturbance etc. In light of this, he has decided to retest me again in 8 weeks, both another MRI and Opthamology examination.
So now again my focus is on stress management, healthy eating, sleeping better (trying) and a hope and a prayer; any other tips are very welcome too....
Please lets hope this is one of the many things that comes and then goes with AN treatment.
Stella
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Stella, I will be hoping and praying along with you that the problem resolves and you won’t need any surgery.
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Stella,
I believe sleep is a big factor in CSF pressure. This is just my thinking, not anything medical.
If only there was a better way than surgery to address increased intracranial pressure.
Apparently, you can get temporary relive from excessive intracranial pressure by a spinal tap. From what I gather, this involved draining some CSF from the base of the spine. It won't fix the problem, but may give you an indication of what a shunt would do.
Sorry, lots of words and nothing reassuring. I hope things turn out well for you.
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Hi Stella,
Ugh. Limbo. What a wretched place to be. I am so sorry to learn that your issue has not resolved, but happy to know that you are still not exhibiting any symptoms (a light!), and that you’ll be rechecked in 8 weeks' time.
You are so resilient and brave to face this head on and put it in writing — there’s nothing to make a yucky truth more real than black and white (and on a forum!).
I wish I had some really helpful, insightful tips, but I’ve got nothing. Just a bunch of positive thoughts and the sincerest of hopes that this is one of those AN things that waxes, wanes, and GOES AWAY.
Warmly, Jessica
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I am really sorry to hear about the problems you are having Stella. If hearing loss was the only thing we had to deal with it would almost be a blessing. All of the additional symptoms and issues makes it very difficult to cope at times. You seem like a very strong person, just have to keep pushing forward.
Even though we are spread all over the globe, we are right there with you Stella. Hopefully some positive results will occur when you are rechecked in the near future. Be well.
Gary
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Thanks everybody, all your comments really help to feel not so alone on this crazy ride.
@notaclone13: thank you!, your kind comment is exactly what I need.
@ANSydney: your good wishes and insights are always so welcome to me! I agree with you on the sleep; its been elusive for me for a long time but i keep working at it ... increased exercise, set nighttime routine, lavender room spray etc etc. Yes I've heard that of the spinal tap too, yes it's a temporary measure given the known cause of the CSF build up.
@Jessica: thank you! in my world black & white (acceptance) gives us a bit of control about what to do next... your positive thoughts and hopes are uplifting for me.
@gary.s: in the context of all these things, yes hearing loss is the least of worries (except it doesn't feel like it at the time). I really appreciate your very kind & supportive words.
Keep well my global and local friends ! and hopefully my next post is full of positive outcomes.
Stella
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Hi Stella-
I just responded to your PM, hope you get some additional opinions.
Sending you good thoughts and a cyber hug!
-Robin
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Thanks for getting back to me Robin-- be well.
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Hi all,
Well here we are, my retest MRI and ophthalmologist exam are done. I can tell you that the stress of waiting to do these retests to determine the extent of increased intracranial pressure (and potential surgical intervention); has been a roller-coaster.
In any case I have good news! Although the papillodema is still there, it has not worsened, so the ophthalmologist is OK with monitoring this. The MRI showed a slight reduction in the size of the 3rd ventricle, which is a great sign, as the increased ventricle size was the first red flag. So maybe cutting the coffee and hitting the gym 3x week had some impact here (pure speculation but it gives me some actionable tasks).
I still need to retest both (again) in 4 months (around March 2019); I'm really hopeful this reverse trend continues.
keep on keeping on,
Stella (relieved and refocused on the positive)
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Stella, so happy to hear your good news. Keep doing what you are doing and hopefully you will have more good news 4 months from now.
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Thanks notaclone13 ! It was such a relief to have some positive news.
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Great to hear Stella. Looks like things are stable. A good word to hear once you diagnosed with a vestibular schwannoma!
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Great news Stella. Time to relax and get rid of all that anxiety. I am really happy for you that things are okay. It is so nice to hear about some positive news on this forum. Stay healthy and strong. Be well,
Gary
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Such fantastic news, Stella! What a huge relief to learn things are stable and getting better.
Wishing you continued good health!
Jessica
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Hello ANSydney, Gary, and Jessica!
Thank you all for your positivity and words of encouragement --- they really man a lot to me, especially coming from people who know what its like first hand. I am so relieved and looking forward to simply living minus the testing and anxiety for the next few months.
to my US friends - I hope you enjoy a healthy and Happy Thanksgiving
in Sydney - let's hope for a healthy and joyful summer
Stella :)
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Hi all,
My March retest MRI and ophthalmologist exams are done. Things are stable!
I still have increased intracranial pressure as evidenced by papillodema in both eyes but the left optic nerve is slightly better; in any case I have 6 months before a retest to monitor this.
My neurosurgeon reviewed my MRI- things look about the same (stable) - happy for a 12 month check up now.
I'm hoping with time and some healthy living that the increased pressure will resolve. I'm looking forward to being test-free for a while.
keep on keeping on,
Stella
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It’s so lovely to hear things are stable for you, Stella!! Though the pressure is still there, that’s great news that your optic nerve is slightly better. It’s also terrific that your neurosurgeon says things look about the same as far as your AN. Good news all around! I bet time and healthy living are huge in continuing to help, and also hope that things continue to improve and resolve.
Sending you positive vibes!
Jessica
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Stella, good to hear that things are stable. I hope the increased intracranial pressure can be addressed. Has you neurosurgeon made any suggestion about what could be done to help?
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Stella, thanks for posting your good news. We all share your relief in knowing things are stable. Every mri is preceded a period of by anxiety and worry. It is such a blessing to hear that the tumor remains the same or better yet is shrinking.
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Thanks for the positivity Jessica, ANSydney & notaclone13 !!!! yes definitely a relief :D
@ANSydney -- as always an excellent question; no i have not had suggestions from the medical establishment about reducing the increased CSF pressure -- so far i've reduced coffee, increased exercise and try to keep stress to a minimum.
Stella
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Here is the latest from me at (almost) 5 years post CK:
Tumor is stable in size and appearance , slightly smaller than when I started this ride ;D. The good news is the neurosurgeon noticed more distinct CSF flow throughout my brain, the tumor looked visibly smaller & the great news is he doesn't want to see me for 2 years!!
After 13 rounds in the MRI machine, I am very happy to wait 2 years until the next one.
The ophthalmologist is fine with my papillodema (optic nerve swell) being stable too, so I can wait 1 year (instead of 6mths) for the next check on that one :D. I'm getting hearing checked again in August - hopefully hearing loss has peaked.
Overall I feel pretty good. The tinnitus plays up to remind me when I'm over-stressed, the left side of my facial numbness is still there and the hearing loss is an issue when in crowded places (better with my hearing aid on).
My latest health improvement strategies include intermittent fasting and the wonderful practice of Yin Yoga -- really helps instill the calm.
wishing you much thanks for supporting this life changing journey,
be well during these (additionally) trying times
Stella
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Stella, I am so very happy for you. Your story is inspirational to all of us.
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Hello notaclone13, thank you !! , for your kind support :D, it's made a big difference to my journey to have this forum to vent, document, learn and receive kind words, take good care, Stella
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*** Latest update from me at (almost) 7 years post CK***
I just got my results from my MRI for 2022 (last one was in 2020), the good news is I can now go 3 years till the next one ;D
BRAIN
This is the first time seeing a significant reduction in size.
There has been good reduction in tumor size measuring 2.3 x 2.2cm compared to my 2020 results (2.9 x 2.9cm). ;D
"It exerts less mass effect on the brachium pontis and previous distortion of the fourth ventricle has essentially resolved"
EYES
The ophthalmologist is fine with my papillodema (optic nerve swell) being reduced too -- looks like normal range now, so I can wait 2 years for the next check on that one ;D
EARS
Compared to previous assessment from 2020, hearing has remained stable bilaterally.
ie I still need the hearing aid when out and about. Don't use it much when I'm working from home with a headset on.
Overall I'm doing OK, I tend to live a much more stress-free lifestyle where I can, Yoga and daily walking definitely help with that.
As always, wishing you my heartfelt thanks for your support on this forum, it has made all the difference to me.
wishing you well on the healing path,
Stella
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Thanks for sharing your wonderful report, Stella!
It is so encouraging to hear. Stories like yours give me a lot of hope!
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Stella
I am really happy to read you update!! Fantastic. So pleased all is well! xx
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:) :) :) :) :) :) :)
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Thank you donjehle & Michele!!
It's relieving to get positive news that's for sure.
Be well,
Stella
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Hey Stella am going really well now- no more nerve pain! I started on LDN now and it is helping me a lot. I think after the vaccine I was in a hyper inflammatory state- it was toxic for me. However I am now recovered at 8 months.
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So happy for you Stella! Your AN journey has not been an easy one so it’s encouraging to hear your good news. I have an MRI scheduled for next week, approximately 14 months after radiation treatment. I’m having hemifacial spasms daily so I’m very anxious about what is going on inside this noggin of mine.
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@Michele-- it took a long while, I'm so glad to hear you are doing much better.
@notaclone13-- thanks you!!! I hope your MRI goes really well & facial spasms ease soon. I didn't have those, but had many other weird symptoms for a few years post CK, then they eased off -- hopefully the spasms are transient.
my best,
Stella
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Hi Stella!
Oh my gosh, I just read your update -- what terrific news! Though you got it a while ago, you still must be over the moon. I am so happy for you, and glad to know you are doing great!
Jessica
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Hi Stella!
Oh my gosh, I just read your update -- what terrific news! Though you got it a while ago, you still must be over the moon. I am so happy for you, and glad to know you are doing great!
Jessica
Thank you Jessica !!!! -- yes no news sine then, is good news for me ;D
be well
Stella
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Hey Stella! Glad all still going well- me too! :)