I am with both dancermom and cookster on this one.I understand your feelings as I've been there myself,but like cookster I tried to stop them all and the pain totally incapacitated me.I would get a professional opinion about this before proceeding and maybe inquire about just phasing some out as cookster said.It could be dangerous to go off some medications just all at once.Before my first AVM ruptured I used to watch all the drug advertisements on TV and wondered if the drug companies wouldn't just love to see everyone in the U.S.on one drug or another.I also swore I would never let them get me(lol)!Now though every time I take my med's I berate myself for allowing them to do this to me.But I know that I tried.
Anyways,if you are determined to do this please proceed slowly and with medical advice and help.God Bless.
Hi All! I am Daniella's mom. Thanks so much for all of your input. We have not sent her records to Dr. Spetzler, but have consulted Dr. Fukushima, a world renowned vascular neurosurgeon who has confirmed that Dani's AVM is inoperable. She is consulting her family physician and her neurologist about tapering off of her meds slowly and one at a time. Dani is working with a therapist who is helping her deal with living life a little differently than she had expected. She is a junior in high school who is dealing with being a teenager, working to maintain her honor roll status, deciding on a college, all the while dealing with a myriad of weird symptoms. I am proud of her and support her fully in her decision to try a more natural approach.
Good to hear from you, Jessilynn. We support Daniella in her decision. I hope it goes well for her!
Thank you for sharing the link to the video on angiogenesis and anti-angiogensis. Fascinating!
We are here to offer our support, encouragement and advice if needed. She has a lot on her plate. My teenaged daughter has had to deal with the fall out of her very large spinal AVM and it has not been easy. This forum has been a great place for both of us. It helps to know that you are not alone.
Hi Daniella. I am glad you are discussing this decision with your doctors. Some members just took themselves off the meds with out medical supervision and the results were disastrous. I have to say that you are young enough that at some point in your life medical technology might catch up with your now inop AVM. In the meantime…you will be on my prayer list!
hello there dancer mom
Hi Daniella and Daniella's mom!
I can totally understand wanting to get off pharmaceutical medications too deal with issues such as depression and pain, however i would be cautious about going off seizure meds as others have pointed out a seizure can cause a significant amount of harm. I am glad that you are working with your doctors to get yourself off any medications that you are currently on as well.
That being said, in trying to deal with your pain and any anxiety/depression, have you tried acupuncture? Right after my aneurysm bleed and AVM diagnosis I was suffering from PTSD and has a large amount of anxiety. I spoke to my neurosurgeon about my emotional issues and he was VERY supportive of me trying acupuncture before he would even think about prescribing me any medications. I was going once a week for treatments to a community acupuncture clinic and it worked wonders to help deal with the anxiety that I had been facing. In addition, I could also help with any pain your are experiencing.
Good luck with everything and I totally understand why you are not wanting to go forward with any treatment as well. I have an active AVM that is a grade III/grade IV in the right parietal region of my brain that I have elected to not treat. The AVM is considered treatable but treatment in my case could result in significant deficits. I am asymptomatic at the moment and because of that, my doctors have all said I should leave well enough alone and not tempt fate.
I am only 16. No kids. Obviously not married. I have a very high pain tolerance and have found some natural remedies to help with the pain. I would never want surgery, regardless of if it was actually an option.
It's not that the pills are reminders of my brain problems, it's that I don't want to continue to put unnatural chemicals into my body.
I am seeing my doctor to talk about this.
I am currently seeing a cognitive-behavioral therapist and that is helping more than my anti-depressants ever did. I am aware that I have to wean off medication. I've already talked to my doctors.
I have no desire to get surgery and I wouldn't want to have to go to Arizona to get it. It seems like a waste to me.
I don't want the mind altering chemicals going into my body. That is why I want to get off of them. I'm not myself anymore. I don't want to have to cope with anything. I just want to live.
dude, message her if you want to talk.
Yes, but you must also keep in mind the risks of going off them. The feeling of normality might not be worth it. They make me miserable too because we've known an un-medicated life, but that doesn't mean that you'll be happier or safer off them. I would at least stay on the anti-seizure drugs, and maybe talk to your doctor about changing them or doing something else, but unless your natural way is proven effective, I don't think it'd be worth the risk.
For clarification purposes, Dani was put on anti-seizure meds as a precaution...She has what some doctors call "spells" and other doctors like to call "episodes", one diagnosed her with syncopy(fainting). At that point she went through several heart tests which all showed a strong heart. They say that it must be seizure activity, because they have ruled out everything else, but have not had an EEG show definite activity either. Dani tried Trileptal-allergic. They put her on Tegratol-allergic. Now she is on Kepra. No change in "episodes" while taking 1000mg twice a day. Her thoughts are, and I tend to agree, why medicate if there is no improvement? Is it possible that she will develop definite seizures from her AVM? Yes. We are aware, but it is also possible that she will maintain her "status" for a very long time. She, and those that love her are willing to take that risk for the sake of her quality of life.
It sounds like you and Daniella are making careful, reasoned decisions. Good job, Mom!
In my journey, it isn't choosing one or the other. The answer is choose it all. Diet, Yoga, Meditation, Massage, No sugar diet. This disease is a disease and it has choosen you. Mine was given to me through my mother side of the family and we have multiple members of our family that will have a brain disease forever. Can't change or wish it away. I hope you choose it all. Dr. Spetzler at the Barrow Institute and Dr. Steinberg at Stanford or John Hopkins have all inclusive treatment plans. The journey is not just of the body, but of the soul too. Find what is safe and sure as no holistic approach by itself will make your AVM go away. Research, Keep Asking even if they say there is nothing we can do. It took me 3 years and multiple physician before someone confirmed my seriousness and life threatening situation and they gave me choice, live or die.
this is a malformation. not a disease. It is a disfigurement, nothing more. It isn't going to kill me, it is just going to make life harder. I am done with medication and that is final. I'd rather deal with the pain than deal with all of the doctor bills and prescriptions. I am happy with my decision.