Recent Posts

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AN Issues / Re: Stinging nerve pain
« Last post by mwatto on March 22, 2024, 01:12:07 am »
Yes I am seeing a physio who specialises in the Watson technique as he feels its neck related and after two sessions its much improved. Since I posted this I am also wearing a night dental guard as I was told it could be TMJ also. Its been stressful as past 5 years stining eye pain in night, ear pain that disrupts my sleep. Nothing of interest on last MRI. I saw a neuro surgeon as well who went through all my MRIs as another opinion- said no compression of nerves. Saw opthalmologist he say eyes are fine, camera down ear- nothing....mystery. Nothing in day- its lying down on that side though. I would blame it on radiotherapy except that stabbing ear pain for two years led to AN discovery on MRI.
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Post-Treatment / Re: A Raw Deal ✖️
« Last post by carriekartman on March 20, 2024, 07:41:39 pm »
I wish you the strength to seek more help with recovery, when you can. There are good doctors and alternative medicine practitioners, but I know that finding them is not always easy. You have every reason to be angry, and I hope you get the support you need to push forward and not give up on healing.
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Radiation / Radiosurgery / Re: 28 Years Old - Need to make a decision
« Last post by Michellebelle007 on March 20, 2024, 07:12:05 am »
Hi- my greatest sympathies for you, I also have an acoustic neuroma. Something to think about is are you ok with the symptoms you have now, can you live with them for the foreseeable future this way? If so I would lean to Radiosurgery, as it is less invasive and will success will keep it from ever growing again. On the other hand if your symptoms are very bothersome, as hard as surgery is, it may greatly reduce those symptoms, given a successful surgery. I have had surgery, it partially regrew so I had Proton Radiation, and unfortunately now it may be regrowing again and I may need surgery again (during both my pregnancies I experienced rapid regrowth). So I have had both, and while neither are cure alls because each of these tumors react so differently in each person..I will say after my initial surgery it took a few months to get back to 100% but I felt so much better, and it lasted for years until the regrowth. Alternatively before radiation I began to experience symptoms, after radiation and those symptoms have stayed the same. This was my experience, wishing you the best in your journey.
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Pre-Treatment Options / Re: my experience choosing a translab team
« Last post by centerbolt on March 20, 2024, 12:54:56 am »
Hope all the luck will come to you.
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Pre-Treatment Options / Re: Decision Anxiety
« Last post by MorganofTarth on March 19, 2024, 05:24:04 pm »
Opened this post expecting to read about someone like me who's currently going through decision anxiety, so it's refreshing to see a perspective from someone who's a few years post surgery. Thank you for posting!
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Post-Treatment / Re: 3 weeks post-op translab at UCSD - my experience so far
« Last post by MorganofTarth on March 19, 2024, 04:58:10 pm »
Thank you for this write up. I am still probably going to have to have surgery, so it was very helpful. How was flying after your surgery? Any pain or discomfort?
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Radiation / Radiosurgery / Re: 28 Years Old - Need to make a decision
« Last post by DanFouratt on March 19, 2024, 03:34:45 pm »
I am not 28 not even 2 x 28 but I went with Radiation.  I wore out many surgeons and oncologists in making my decision.  Like you, I had limited hearing, so the long term issue of hearing loss was not considered by me.  I put a long chart together outlining what a learned for each option on the table (CK/GK and the three surgeries).  There are several great meetings on this website in the history.  They are referenced in my chart, and I will see if I cna put a list together for you.  If you want it reach out to my personal email (Dan4att@gmail.com) and I will send it.  In my decision journey the one bit of advice I got that really stuck with me is either decision is correct.  When you make it do not second guess yourself but focus in getting the best outcome.

Just to let you know I am going in for open heart surgery.  I will have several procedures tomorrow morning and should be able to respond in the afternoon or possibly Thursday morning, then the bog event will happen.  After that response might be in a week if all stories are true.

Sorry you are now part of this club but understand this is a great group.  I went from crazy to I got this thanks to the support of the members here.

Keep communicating and you will continue to get information.

Best of luck in your decision journey,

Dan
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Radiation / Radiosurgery / Re: 28 Years Old - Need to make a decision
« Last post by Hahanghan on March 19, 2024, 01:42:55 pm »
Thanks for sharing your story. It takes courage to reach out, especially when facing tough decisions. It's understandable to feel uncertain with such a complex situation.I believe hearing from others who've faced similar challenges could offer valuable insights. Have you considered seeking advice from support groups or connecting with individuals who've been through similar health journeys? Also, decision-making can sometimes feel like rolling the dice. Have you ever tried using a dice roller to help make choices? It might sound unconventional, but it could add an interesting perspective to your decision-making process.
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AN Issues / Re: Stinging nerve pain
« Last post by 4givvvn on March 19, 2024, 10:18:09 am »
I've dealt with something similar, a nagging, stinging pain that seemed to come out of nowhere, especially troubling at night. It wasn't until I had almost given up on finding a solution that I turned to physiotherapy. I went to Pure Life Physiotherapy & Health Centre Surrey, where I met Riddhi. She was incredibly understanding and took the time to really investigate the source of my pain, beyond just the symptoms. Through a combination of targeted exercises, manual therapy, and some adjustments to my daily routine, we managed to significantly reduce the intensity and frequency of the stinging sensations. It wasn't an overnight fix, but her guidance and the personalized care plan made a huge difference.
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Hearing Issues / Re: Bone Conduction Headphones
« Last post by carriekartman on March 18, 2024, 03:16:29 pm »
Hi Don,

My hearing is totally gone on the AN side. I'm 2 weeks post fractionated radiation treatments, and dealing with fatigue, more dizziness and balance problems, but it's incrementally getting better.  I just met with my ENT who referred me to audiology, with recommendation to either "do nothing" or try one of several bone conduction aids, which I will definitely try. ADHear is one, Ponto from Oticon Medical is another, and Cochlear.com BAHA system is another. My brother, who has no hearing loss, using over the counter ones for swimming and bike races and says the sound quality is excellent. I'm unsure what it will be like however, to have the good side taking in sound from both sides. . but want to try it out. If others already have tried any of these, I'd love to hear about it.

Carrie
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