Hi, Howard here. I am now just about 6 months out from surgery. AVM repaired and Aneurism clipped. Both in my cerebellum. Still quite sick. Very dizzy most of the time which often leads to nausea and vomiting. The back of my head still swells and I feel pressure around my head. The swelling concerns me but I have been told that it just takes a lot of time. Originally, I was told I would heal in 3-6 weeks. Can you believe that! I realize that I am a very lucky having had the surgery to correct my problem but I am so sick most of the time. Can anyone relate to the swelling. Will it eventually stop? Thank you for your replies,
Hi Howard. So nice to hear from you and thanks for sharing. I haven't had treatment for my (unruptured) AVM of the Cerebellum so I'm afraid I am unable to answer your question. However I have always been told that I couldn't have surgery for my AVM as the Cerebellum is too low down. My Neurosurgeon suggested trying at least 3 embolisations (to shrink it) and then Gamma Knife. But I decided to leave it alone after much soul-searching since it hasn't caused much of an issue yet and I have a good quality of life. Please could you tell me a little more about your experiences of surgery? And has your AVM gone completely now? Cheers Lulu
Hello, Howard! The symptoms continue with no end in sight...I was there. I remember thinking, "When will this end? How much longer will this last?" I had no problem with swelling, but I certainly had experience with dizziness and nausea--lost 50 lbs. The doctors were surprised by the severity of the after-effects. After a lot of experience dealing with doctors, I realized that they can only estimate how long a recovery is going to be. A doctor can never say, with much certainty, how long we are going to suffer. The brain is complex thing. A millimeter here or there in terms of position or size can make a lot of difference in terms of symptoms produced. If the position or size were a bit different, 3-6 weeks may have correct. In your case, and my case, they really underestimated. I'm very sorry I can't give better advice and more comfort, especially to someone who is suffering as I did. It will take time.
Here are two pieces of advice that I learned from my recovery. I had no appetite and could not keep down food I did eat. I later suffered from a bad vitamin D deficiency that was not addressed until over two years after the stroke. I believe the poor nutrition, especially the D deficiency, made my recovery slower than it might have been. Make every effort to eat nutritiously (to the extent you can hold it down!). Use vitamin and mineral supplements when you can (it was a problem for me sometimes because pills would trigger my gag reflex). I wish I had used liquid supplements more. Because of the vitamin D issue I suffered, try to spend some time in the sunshine.
Walk as much as you can. It won't make you feel wonderful right away, but it will speed your recovery. After a point, try doing other exercises. In fact, my recovery really did not take off until I started going to the gym and exercising. I was unable to go until about 7 months after my AVM, and when I did go, it was slow and careful. I was very frail, but my recovery really picked up speed after that point. Walking and exercise were tough to do because I did not feel like doing them--no energy at all. I had to force myself to do exercise, but after I was done, I was glad for making the effort.
Depression is an issue for us. It certainly was for me--don't forget about dealing with your depression. It may be an issue just as dizziness and nausea are.
Hi Lulu,
I had a bleed in my cerebellum. I'm not certain if it was the AVM or Aneurism that bleed. My surgeon waited about a eek to operate. The recovery wasn't bad at all. The nausea began about two weeks after surgery and persists now for about 6 months. I can't say what triggers it but I know when I swell I feel worst. Good luck to you. I hope this helps.
Howard
Hi,
I haven't lost weight as eating makes me feel better. I never know when I'm going to get sick. The swelling seems to be when I feel worst. I need to start a gym routine.
Today I am seeing a new Neurologist. Some of my doctors have suggested Diamox. For some reason, my surgeon doesn't want me to use it. Scopalomine seems to help a little. Thanks for all your information. I really appreciate it.
Best,
Howard
Hi Howard - I totally forgot how much pain that I was in until reading your post reminded me…obviously, it gets better.
I was in the hospital at the time, unable to speak that the back of my head was killing me…and in a hospital bed, there was no other option but to sleep on my back.
I’m thankful that I could still think/problem-solve. After trying a few different types of pillows, what finally worked for me was one of those inflatable bath pillows.
Regarding the pain from my swelling, I want to say that it “only” took a few weeks; getting a pillow that could accommodate my swelling was key to sleep, etc.
It will get better.
Many thanks Howard. That is helpful. I really hope your symptons die down soon. All the best.
Lulu
Thank you Julie. I, fortunately do not have any pain since surgery. Just dizzy and nausea.
Best, Howard
they gave me some sticker thing to put behind my ear and it really helped with the dizziness and nausea.
Hi Boston Celtics.
I have been using it. It's Scopolamine. It does seem to lesson the nausea.
Thanks, Howard
oh ya...shouldve looked it up. worked for me bc the nausea was from being dizzy, I guess. i was wicked nauseous in the ICU once and NOTHING worked except I knew marijuana would. i would've traded the panic attack for relief.
o whoops, you said "does seem," not "doesn't seem"