You crack me up. Love your texts. Yes 3 embolizations and I was out for them all. It’s getting in there that’s the worst for me. I’m a wreck. I haven’t any idea how many angiograms I’ve had. I’m honestly not too worried about that as much as " what if they didn’t get it all!" Just knowing it’s not over yet
Thanku. U did cheer me up. I’m sure it’ll be fine. I said to my Dr that I had a stroke 2 weeks after my covid shot. So maybe I did word it wrong. I was thinking " I have an AVM the shot made it bleed". I have read some things on some of the shots that did cause strokes too. Hopefully my appt will be soon. He sounded rushed today on the phone. We got hung up too somehow, probably didn’t make him happy. So I felt rushed to finish my questions.
Thank you for the smile. BTW tomorrow is week 6 of recovery!!
The wrist would be nice! I know it’s what they have to do. I just hope the news is good!
Ok, so a rescan to see how things are settling down sounds appropriate – normal – to me if you’re at 6 weeks. Don’t read any more into it than that.
You’ll be fine.
Ok! I won’t. I just needed some reassurance I guess. Thank you so much!
Just thinking today about my therapy and wondering if I maybe started it too early. I’m in my 7th week of recovery from my craineotomy and I started the vestibular therapy on the 4th week. This week I’ve felt terrible and it’s time for my 4th appt. I haven’t been able to do any of the excercises. I hate to go in there and tell her I have when I haven’t. It makes me feel bad that I can’t. I honestly feel sometimes like I’m trying to exercise with the flu. It’s miserable. Every week I’m done in after my appt for at least two days. It’s hard on me. This week I just couldn’t pull it together at all. Maybe my mind is playing games with me. Did I start therapy too soon after the craineotomy? I wonder. Maybe we have to tho for the insurance to kick in. I dunno.
It’s so cold her in Eugene Oregon. I’ve been waiting for warm ups so I can get out and feel the sun on my face and walk for strength. I’m sure it will be so good for me. It has so many benefits.
Still waiting for my angiogram to see if my AVM is all gone. I called them today and they gave me Feb 11 at 7:30 a.m. my sister drives me there and it’s two hrs away so I kindly declined. Waiting for them to call me back. I just want to be done. I hate dreading…
Hope everyone is well
Right after my surgery I did PT and it included some vestibular exercises that I worked very hard at, but it was just too much and I felt like it made me worse, at least for a few hours after. I ended up working more on balance and strengthening. For the vestibular part I just decided to try and move around as normally as possible; to walk and do what I could. If something made ma a little dizzy I would do what I could, then rest until it went away. Everything we do is a vestibular challenge.
At about ten months I went back to PT for more vestibular therapy. Even then I was doing things slower than they suggested. When I would tell them how long I was dizzy after a session then they would adjust it down.
Please let the PT know how you are doing. They can adjust, or maybe help you figure out if it would be better to try again in six months?
When I did go back it was a huge help for me.
My neuro surgeon did say that the cerebellum has a huge capacity for compensation. It take a long time. I’m at almost four years but I’m still seeing some small improvements.
I’m with you on walking and being outside. I love it and it’s definitely good for the body and the soul. I hope the spring comes early for you
Thank u Cancrd
I actually did talk to her this week and even cried. She was so reassuring and sweet. I talked about my bad haircut from surgery and she encouraged me to wear my scars with honor because I’m still here! It is true. All we go thru. It could have been different so easily. She felt she was pushing too hard and looked thru everything and really made some changes. It’s helping. Everything u said makes lots of sense.
Today’s my birthday. It’s good to be alive. My Surgeons Office called and scheduled my angiogram for Feb. 28th. I wish I didn’t have to. I’m so afraid they’re going to find something and I’ll need another surgery. But I know it’s all part of the surgery. They have to check. They’ll also look to see if I have anymore malformations. You’d think he would have looked with the other 3 angiograms…?? But I’ll do it. I want it all over with.
I’m starting to feel better. Wish the dizziness was gone. But I feel it will be with my strength getting better. Walking I know is the answer for me. I’m at week 8 after surgery now .
Thanku so much for your time. Hoping the best for all
Happy birthday! I think you’re being very strong and while the year ahead may still have it’s challenges, I think you’re doing brilliantly!
I hope you had a super day yesterday.
Oh thanku DickD. I really do appreciate that!
I’m glad you are doing better. I remember how hard it was. I tried to just keep putting one foot in front of the other. It’s so slow and feeling dizzy and nauseous doesn’t help at all.
You are doing way better than I was. I’m so impressed.
There are some great coping strategies on the vestibular disorders website
Nice to hear from someone that I’m doing good. I guess I know I am generally, today I don’t feel it at all. I’ve been trying to get off my zofran as I’ve been on it 8 mths now. It has some pretty major side effects. Or can have. My new Dr wanted me to try cutting back. So I’m taking one at 9 a.m. and one at 8 p.m. it’s usually 4 a day every 6 hrs. Today I felt bad but I need to eat within an HR of taking it and then again every few hrs. Just something. She also said I could put rubbing alcohol on a cotton ball and sniff it. It’s supposed to help not to throw up. I threw up yesterday twice. Not today tho. I just need to pay attention to myself and make sure and eat and sleep. I hope I can just take when needed soon… anyone else have success on how to do this?
Thank you Cancrd
Hello everyone. I’m trying to decide where to post this and so decided where I started would be a good place. I had my angiogram yesterday in Portland to see how my surgery went. It has been 11 weeks I guess or 12. I was pretty calm, as I read enough that people were saying it doesn’t hurt. I’d had 3 thru this journey already but was asleep for them all. So it was great. I love my Dr. I call him my friend and he lets me squeeze his hand each time. He’s Canadian so has a beautiful French accent. It was nice yesterday because I was awake and got to talk to him an hour off and on and hear him say over and over no talking, no swallowing, no moving etc. So he could get a good picture. It was all good. Took me to recover for 3 hrs and within probably half an HR he came in with my news. He was all smiles and said everything looks wonderful. U did so good. We got it all. I cried with tears of joy. I couldn’t quit. He asked if I was ok. I said these are happy tears dr. Vincent. So he said I don’t need another test for 3 yrs. Now I just need to recoup and get stronger. Recover! I’m so very relieved.
That is great to hear, absolutely fantastic news! I also love to hear the stories of great Dr., I had a couple who were wonderful humans in difficult times, it made it so much better. Take Care, John.
When I was at the same stage, my doc simply said to me, “Resume normal life.” It’s not easy to do but my recommendation to you is to resume normal life: start slowly and carefully but put this episode behind you and just look forwards.
Thanku so much John. What an experience! Take care of you too.
Thanku Richard. Yes I have to get used to this part now. Super believing I’m ok! I got used to, over the last 8 months, being careful as not to rock the boat so to speak. Now I can resume as normal? Are u sure doc? Is it true doc? You sure u didnt miss something doc? On and on. I’m sure I’m not alone in worry, but I know I just need some time. Any little feeling in my head now is healing and I just want to believe it and get on with life. Don’t want to dread three years from now. I just want to live my life. Plant my garden, walk, eat ice cream with my granddaughter, love my dog, enjoy the life out of my son’s. Love my hubby and let him continue his training work to keep up helping in the house!! In other words just love my life. Yay!
This is what it is about. The simple things of life.
All the best,
I am so excited for you Debbie. I have never had a good experience with angiograms. I have heard that they can do wrist angiograms now. If I ever decide to have another one, I am going to ask about that procedure.
Great to hear
I have had three grand mal seizures
But at least AVM is gone
Out of my body
Hello everyone. I’m in about my 12th week past my craineotomy. My Dr just called today with a phone visit that was planned when I left the hospital. There he told me he wouldn’t see me for 3 yrs. Today he said he wants to see me in a yr. I asked why . He said he really likes to check on his patience in a yr and is that ok with me. I of course said yes, he knows best. He said the next one would 3 yrs after that. He said again my angiogram looked fantastic. Really nice he said with his beautiful French accent! He said he got all the malformation. I said so are they all gone? Do I have anymore in my brain? He said No! So tomorrow’s now the day I’ve been dreading. It’s time for my covid booster. I am so afraid. It was 2 weeks after my second shot that I had my brain bleed and stroke. I asked him if it would be ok. He said it should be ok! Uugghh. I almost don’t want it, but I do. I want to return to a few things that require all 3. I just have to make sure I’m around help for the next 2 or 3 weeks I guess. Hope all is well with everyone. I’m feeling better everyday!!