Hello everyone, I am a patient with arteriovenous malformations. I had a cerebral hemorrhage on November 27, 2019. I had a particularly painful head, vomiting, and a stiff neck. Because I was afraid that the medical expenses would be too expensive when I was abroad, I thought it was a nervous headache at the time, so I didn’t go to the hospital. I went to acupuncture the next day, and the doctor said it would be better to go to the hospital for a check. On Monday, I went to Toronto General Hospital (Toronto General Hospital). From there, I had a CT diagnosis of cerebral hemorrhage. Then I was transferred to Toronto Western Hospital (Toronto Western Hospital), where I was hospitalized. The diagnosis result was AVM, which I did not know at the time. My malformation is very large, about 3.7✖️3.6cm, in the cerebellar vermis. They embolized the bleeding spot (it was an aneurysm). Fortunately, I am more confident in my English, and I can understand most of what they say. The hospitalization and treatment did not cost me a cent, because the medical insurance in the university covered me. The solution they gave me was a gamma knife. Then the epidemic came and the operation was delayed. I still prefer a craniotomy because I found out that the craniotomy can be cured and the effect is immediate. I did not have a gamma knife and chose to return to China for treatment. This took 5 months in total, and I believe that good things will take a long time. Then I went to Beijing Tiantan Hospital, where I waited 11 days for surgery. Because my malformation group is relatively large and close to the brainstem, their plan is a combined operation, which is to embolize and then craniotize. My operation lasted 15 hours. The luckiest thing is that my surgery was exceptionally successful. There was no major bleeding and no brain stem damage. My intelligence and consciousness were not affected in the slightest. The most serious sequelae after surgery are hyperperfusion and ataxia. I stayed in the ICU for more than a month, and I couldn’t understand other people’s words, and I couldn’t speak. I never sat up in 2020 after the operation. Then I went to recover in January this year. Practice raising the head first. The director said that it should take half a year to raise my head. I didn’t expect that it took me 2 months to raise my head. Then in February, I will speak again. I can’t speak well. I can only pronounce it in my voice, which is still very unclear. I’m much better now, mainly because my torso has stabilized a lot, so that others can go without supporting me hard. I couldn’t sit up at this time last year. My hands have also improved a lot. Now I can eat and write by myself. Although my writing is not good, it is really much better than what I wrote at the beginning. I am really grateful to my parents, I am grateful for their meticulous care, pushing the wheelchair day after day, and I will repay them well when I get better! I am very grateful to my friends for sending me videos and messages during my hospital stay and wishing me a speedy recovery. Then I am very grateful for the patience and dedication of the rehabilitators, and I cannot do without them. I now do what I can, for example, I help others translate speeches; I start to memorize words by myself. I feel that everything is temporary now, I am just like a child, growing up again. Generally speaking, I am still very grateful for this disease, because he made me take my life more seriously. I hope I can return to the original state as soon as possible. Rehabilitation must be persisted, because it takes several years to recover. So this disease is not without hope, but the key lies in how you treat him. Be optimistic about everything.
This condition was an eye opener to me as well. A blessing (and nightmare) in disguise.
Have a happy mind.Believe in yourself.
Thanks fir your message, sounds like you have had quite the journey so far. It must have been much more difficult being so fat from home when this started. The positive outlook is important to recovery, and always remembering forward is forward. Take Care, John
@Jimmy1103 Welcome to the group and thank you for sharing your story. I too had to relearn everything- Its slow in the beginning I did my recovery at Stanford and one of my therpists told me about this site to help my brain https://www.gamesforthebrain.com/
My husband read about the benefits of coconut oil and it did seem to help me- what he did was add 1 teaspoon to my tea or coffee for a few weeks then we worked up to 2 teaspoons throughout the day for a more weeks then 3 teaspoons throughout the day
I also did the Pilates machine a lot at Stanford that I ended up purchasing one to really help my core. I also had my husband film me doing my PT so I can reference them at home to make sure that I was doing them correctly . He would also watch me to make sure my form was correct, Some things like the roller on the floor which was torture at first I could only do llike 3 but I would do them at home every night .
I had been in a coma and was completely paralyzed on my left side and could not speak at all.
I have full movement now but have weakness and pain but am so lucky it came back.
keep us updated on your progress
Angela
I tried very hard to recover. I look forward to the future. I believe that the future is bright.
Had this disease was very annoyed. I believe that you could recover as before.