Acoustic Neuroma / Li-Fraumeni Syndrome

[karenmet]

I was diagnosed with AN in July/2023 have been watching for year now the tumor has started growing 11mm x 3.5mm . I have Li-Fraumeni Syndrome it is a rare autosomal dominant hereditary disorder. I am missing TP53 gene on chromosome 17 that normally assists in the control of cell division and growth, my body does not fight off cancer! I have had 5 types of cancer over the last 32 years. I have had cancer from radiation treatments. I am checking to see anyone else out there has had these two things there are very few people that have Li-Fraumeni. Trying to make right decision on treatment type. Gamma knife and take chance it will not turn the tumor into cancer or Middle Fossa surgery and remove tumor??

[UkulelesAreAwesome]

Hi Karenmet. I'm not familiar with the disease you have which prevents your body from fighting cancer. It sounds like you've been through a lot. I had gamma knife for my AN in 2022. I made the decision because radiation was less frightening to me than having my head cut open. I recently was told my AN has increased in size. It hasn't even been 2 years yet so this could be pseudoprogression or could be growth. I think radiation specialists all believe radiation is the best choice and neurosurgeons believe surgery is the best choice. Its a tough choice for the patient. For me the fear of tumor growth is greater than fear of cancer, but I've never had cancer. I had hoped my gamma knife was the end of procedures that I would need. It seems there are patients who have had radiation and surgery or multiple surgeries.

[mwatto]

Ukeleles I just wanted to chip i after reading your post. There is a good video Dr Chan did in the webinar library- he says wait for 5 years re response. A member here Paul Wellen for example had 'growth' after a few years- he waited and it shrank back down re it was pseudoprogression. Yours was treated almost end of 2022 - so I think you are likely experiencing pseudoprogression. From all my own reading and looking again even yesterday at the radiation video in the library on our site (this one Gamma) that you should not be too concerned.

[UkulelesAreAwesome]

Thanks mwatto. I actually feel very well most days. Facial spasms have lessened. Headaches are not as bad. Head pressure is less frequent. The tumor ear still has a stabbing pain but I know that happens to many of us. I have another MRI in October to see what's happening with the tumor and ventricles. Doctors mentioned they're concerned it's growing in addition to swelling but everything I've read agrees with waiting at least five years to consider it a failed procedure. MRIs are so expensive. Instead of one this year, I had to schedule 2. I'm in no hurry to have a shunt put in or to have my head sliced open so it makes me incredibly anxious. I don't know how anyone goes through repeated surgeries for this. I don't think I could be that brave. I hope to see a smaller tumor on the October MRI. I have 2 autoimmune diseases and I really think my crazy immune system probably overreacted to the radiation. But my high school education is no match for the doctors degree so I feel a bit like I don't have control over what happens next.

[mwatto]

Hi Ukelele - I have that stabbing ear pain too! Had it at time of diagnosis and told its not the AN its more an irritation of the TMJ joint- but an old AN case study I read said related (AN and TMJ). I dont want to hijack this thhread but maybe message me and I will share whats def helped me with that stabbing pain- I get in ear and eye. It wakes me up often. Recently a few things am trying that help.

[stevehernes]

What did you do to get rid of this pain? Did you just stick to normal painkillers, or did you explore other options? I understand that a lot of rest can really ease the discomfort, and I’ve even hired https://domypaper.com/ to help me with my homework to reduce stress and give my body the chance to heal. Still, I would love to hear some recommendations. Are there any specific stretches or alternative therapies that worked for you?

[UkulelesAreAwesome]

Steve, mwatto suggested voltaren gel and I have tried it and it really works. I found it at our local Walmart.

[mwatto]

Steve I have found full spectrum CBD with melatonin helps a bit with that pain. So does voltaren gel, so does a dental mouthgurad at night. Another suseful supplement for me has been high dose PEA (Orthoplex white). I have also found 1mg diazepam with melatonin helpful. I take melatonin that is 3mg instant release compunded here in Australia. Almost forgot- even half a zyrtec seems to work with that darn ear pain! BTW I watched Dr Chang latest video -the one on uncommon symptoms and he explains it well how the AN is impinging on the nervus intermedius nerve -part of facial nerve. All this time I assumed was trigeminal but my MRIs keep ruling that out. I also think the AN secretes toxic proteins so that can lead to teeth clenching in sleep and pressure on the TMJ joint. Also circulation/ blood pressure issues perhaps which lead to tension, neck and ear pain.