Recent Posts

Pages: 1 ... 4 5 [6] 7 8 ... 10
51
Post-Treatment / Re: 6 year MRI update after CK
« Last post by mwatto on April 03, 2025, 07:53:57 pm »
Hi there! Because it is simply monitoring and not diagnostic now I insisted on this because contrast is inflammatory. I always say if something is flagged then sure I will reconsider it. My specialist agrees this is reasonable. We know that AN growth is an inflammatory related response. I also understand from my deeper reading that contrast accumulates even in the brain. Healthy renal function and the glymphatic system helps elimination somewhat but not completely. I just insisted - my body after all. The reports I get are detailed (I have asked eg for info on the trigeminal nerve, facial nerve to check if compression) and really there is enough to go on.
52
AN Issues / Re: New member, symptoms questions.
« Last post by Mark F. on April 03, 2025, 06:33:51 pm »
I had a good appointment today with the second surgeon on my team.   I liked this surgeon too.   He said he agreed that it is a good decision to remove it now while it's still easier on them.   He also said he would try to preserve my hearing nerve so that I could possibly be a candidate for a cochlear implant to get my hearing back on the left.   Best news I've gotten since this whole thing started.   Not guaranteed, but at least he said it's possible.   Everyone else said the hearing on that side would be gone and there is nothing we can do about that.  No firm date for surgery yet, he said probably in 4-8 weeks from now since it's not an emergency.  I will have a firm date soon, possibly even tomorrow.
53
Caregivers / Patient is being difficult before surgery
« Last post by JackieB on April 03, 2025, 05:56:18 pm »
My husband has surgery scheduled later this month.   He is being very difficult.   He has snapped at me.  He had been rude to others.   I asked him if he was anxious about the surgery and he said I was harassing him.   Maybe he didn’t hear me correctly.     He’s having surgery out of state which was his choice.   Maybe that’s adding to the stress.   I’m just not sure what to do.   There will be a lot on me—him, too.  Yes, I said in sickness and in health and for better and for worse.   Any advice?
54
Post-Treatment / Re: 6 year MRI update after CK
« Last post by JmLgrace on April 03, 2025, 08:16:08 am »
Hey mwatto,
I'm so glad your MRI was stable!  You said that it was without contrast.  Did your doctor do it without contrast on his own initiative or did you have to request it be done that way?  If you requested it, any tips on getting your doctor to agree to do it that way?
55
Post-Treatment / 6 year MRI update after CK
« Last post by mwatto on April 02, 2025, 10:37:36 pm »
Hi all given that I feel I know some of you here I thought I would share my 6th MRI (non-contrast) - all stable no change (shrank by half two years ago) also my hearing is still the same as last year around 87% according to latest audiology report. I still however get deep stabbing ear pain, eye pain, neck pain on that side which wakes me up, however the MRI showed no compression. It might be  TMJ and teeth clenching so I wear a dental guard. Consulted yesterday with specialist who told me that I will need yearly MRIs for rest of life as mine was 2cms which puts me at risk of regrowth down the line. I guess I can see this positively as at 64 it also gives me insight into my ageing brain. He also said if regrowth they can zap those non responsive cells.
56
AN Issues / Re: New member, symptoms questions.
« Last post by Jill Marie on April 02, 2025, 10:31:17 pm »
Hi Mark,  I'm really glad to hear that the Neurosurgeon agreed to not wait any longer for the surgery.  I bet you were relieved when he agreed with you that because of the balance issues it was time to proceed. Good point, the tumor will be easier to remove now, another plus to having the surgery soon.  Please let us know when the surgery is scheduled.  I'm sure you will have lots of questions about what to expect and how to handle recovery. We will be hoping your surgery will happen soon so you can say goodbye to the headaches!  Jill
57
Post-Treatment / Re: Any success stories and positive experiences with AN surgery?
« Last post by dfllicursi on April 02, 2025, 07:04:45 pm »
Hi


Have three words for you positive, positive and Positive and keep moving forward...Never quit, and stay strong....

Going on 2 1/2 years after surgery, my AN was 5cm and pressing on my brain stem....It was as bad as it gets.....but had great surgeons and I am back to being 98% and still progessing.....There were good days and bad but I would not let this beat me....

Attitude is a big part of recovery....Take therapy very seriously and keep walking...walking is the key....3, 4,5 miles a day......My surgeons were amazed at my recovery and attribute it to my walking...

Have faith in God, Faith in Yourself and Faith in your medical team and good things happen...and Never Ever feel sorry for yourself....

KEEP MOVING FORWARD!!!!!
58
Post-Treatment / Re: 3 year MRI coming up
« Last post by Karin Mauro on April 02, 2025, 12:35:00 pm »
Please stop beating yourself up. There is nothing wrong with the decisions you’ve made. When we are presented with options for treatment there is no wrong choice. All the options are valid choices but each outcome is unknown, and anything can happen. It’s not your fault nor your providers. You’re not stupid and there’s nothing wrong with holding on to some hope. You’ll have your next mri and make your next decisions accordingly and your decisions will be right for you at that time. Find a way to deal with the anxiety and fear that works best for you, ie; exercise, reading, play the ukulele!…
Enjoy the good days, and know that you’re not responsible for the not-so-good ones. This is just how it is.

Best wishes, karin
59
Physicians / Re: Birmingham vs Houston vs Nashville
« Last post by Ellioky on April 02, 2025, 11:06:04 am »
I had my surgery at Vanderbilt in July 2022.  Brain tumors are the pits, but the Vanderbilt team was great.  We had discussed other places, but besides the good things we heard about the doctors, Vanderbilt was closest to home. I developed some post-surgery complications so I am glad that we chose somewhere we could easily drive back to for treatment.
60
For those in the 'watch and wait' status / Re: Supplements / vitamins i personally use.
« Last post by 4givvvn on April 02, 2025, 05:16:34 am »
I’ve also been through a phase of testing out different supplements to support overall wellness, especially after a health scare a couple years ago. I focused more on magnesium, curcumin, and omega 3 like you, and noticed they helped with general inflammation and sleep. I added green tea, just like you mentioned, and switched most of my protein sources to plant-based, like quinoa and legumes. Cutting out alcohol made the biggest noticeable change in how I felt day to day.

Tracking everything over time definitely helped. I didn’t want to overdo anything or mix stuff that didn’t work well together. What’s helped me stay on top of it lately is using Menalam. It gives me clearer daily insight into which supplements I should actually take and whether anything needs adjusting depending on current habits or health.
Pages: 1 ... 4 5 [6] 7 8 ... 10