Author Topic: Hi from overseas Europe  (Read 434 times)

Siila

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Hi from overseas Europe
« on: January 09, 2018, 01:16:47 am »
Hello all AN people. I am a bit over 30 years old and found out about my AN (8 x 3-4 mm) 3 years ago. So far on watch and wait. I had probably the worst Christmas that year as the doctor suspected Multiple Sclerosis or brain tumor and I was waiting the results to come in in first week of January.

As now another yearly MRI date approaches the anxiety is building up… (not happy having medical interventions and gadolinium injected as its long term side effects are unknown) although I have put an enormous effort to practicing mindfulness and being grateful. As life has thrown also other negative milestones on my plate past three years it is sometimes so hard to have a peace of mind and hope.
 
Especially the days when spinning sensation occurs, nausea bothers, left side of the face is numbish + have headaches. (My doctor told me AN doesn’t cause pain but I beg to differ) Also depression hit hard after getting the diagnosis.

Reading peoples’ stories is calming on on side but is also making me sad. Most journey descriptions are from US. I am from a small European country so if my tumor progresses then there are not many specialists to treat it here. The best reassurance from the doc was that they have two other patients without any growth fro ten years. Although we have well developed medical care, the population is so small that this type of tumor treatment is really rare. All of this uncertainty really sucks.

I have been considering aspirin regimen as well read today about honokiol. But as I am young the long term consumption of any substance makes me really careful.

SP

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  • Posts: 60
Re: Hi from overseas Europe
« Reply #1 on: January 15, 2018, 03:16:41 pm »
Hi Siila,

finding out about having an AN and having that yearly MRI check up really can be a stressful situation, I'm sorry you're going through this. Everyone's situation is unique and it is difficult navigating the information and options for next steps...For me the information on this discussion forum was very valuable to understand the process and options (I spent alot of time on research --some may say too much-- but it was also a way of coping at the time).

It may be worth asking your doctor if they can do your MRI without Gadolinium, as i recently discovered (after about 10 MRIs over the last 3 years) , that they can do the next one without GAD.

its really difficult to maintain peace of mind when you are going through this difficulty but anything you can do to reduce stress may help to manage somewhat (it sounds like you've started this with mindfulness practice)... i hope that your way forward becomes easier for you.
Stella
2.9 cm Left-side AN (Aug 2017)
3.2 cm Left-side AN (Aug 2015)
CK @ Stanford, August 17 - 19, 2015 (Drs. Chang & Soltys)

 


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