The anxiety waiting for surgery is enough to make anyone a little wired. My doctors had me scheduled for the 13th of June. Then it changed to the 12th. Now, they’ve changed it to the 27th. Two more weeks of waiting and the anxiety is horrible. I’m about to see if another hospital can take me sooner. The AVM is one thing and the waiting is so CRUEL. I need feedback please? What would you do if they kept changing your surgery date? TIA
Unfortunately here in Scotland I find my hands are tied when the Doctors change appointments and sometimes they do not fully understand the anxiety we go through with the changing of appointments. I initially waited nearly a year after my angiogram to go see my neurosurgeon after having it changed due to lack of staff ? I can only imagine how difficult it must be for you waiting for surgery. I do understand how difficult it is arranging lots of appointments and surgeries but it’s people’s feelings and anxieties that are affected. I know when I was waiting all I could do was phone up every month to see where I was on the list. It may not have helped but at least I felt I was doing something. I am sorry that I do not have any good advice but reassured that if they are moving the dates they may be doing that to ensure that you have the best and qualified surgeon to do the op on the day.
Hi! Waiting is part of the game, I think. In many ways I think it is the worst part. As Manda says, in the UK, treatment is free but you end up waiting your turn on a priority basis. I assume you don’t have that to contend with – just the consultant’s golfing holidays to fit in?!
Best advice I’ve got is to keep busy, keep occupied with normal life or get into a hobby that requires a bit of thinking, to stop you just focussing on when you’ll get there.
Very best wishes,
Thanks Mandaayr, This is what I needed to know. I’m in the U.S. (Texas). I think I need to settle down. Let go and let God! I’m over here complaining about a couple of weeks and you had to wait over a year? I’m going to be grateful now. Yes, the anxiety is horrible and I have these panic attacks too. It’ll all be okay. I just know it will.
I’m painting rocks instead of kicking them to fill the time. I have little words of wisdom on them and leave them around town or wherever I go. I just wish they wouldn’t change the date once set. My brain wants it to remain the same, lol. I get there…one rock at a time.
I am so sorry it is hard to wait . For my second angio I actually forgot to take my meds that prevent me from dying during surgery I have an Iodine allergy so a few days before I take a bunch of steroids. My surgery was the 1st one of the day so we had to be there around 5am and my family was there plus my gf who works for the hospital and she was going to be allowed in the surgery room to hold my hand and keep me relaxed…so everyone had to go home and we had to do it 2 weeks later! I felt terrible for everyone and felt like I let everyone down. I was so focused on getting everything done around the house so my husband would not have the extra burden of doing stuff like laundry etc while he was taking care of me I forgot to take my meds.
Everyone took it fine and everyone came back in 2 weeks. I took everyone out to a nice a breakfast.
Maybe go to the hospital where you are having surgery so you know where everything is and where to park etc.
You have 2 weeks and maybe get a good book that you have been wanting to read or start a craft project. Keep your mind and hands busy it will make the time go faster.
Please let us know how it goes
Ohhh, in your defense, what are they doing trusting your memory to take those pills? I hate you were right there then nothing. And you had everyone in place too. I’m sure you were really happy they could make it, one more time. My daughter is coming on the 25th and staying for a week. She lives in AZ and took some time off for “little ole me”, lol. I’d hate if for some reason they rescheduled me again.
My memory is really bad, the sound in my ears and the tiredness is hard. I’m a go getter and my “go getter” is broken, lol. The wondering and waiting is excruciating to say the least. I’ve been having panic attacks that require medication to control. The med makes me tired. It’s hard not to stress about it when the symptoms remind you of it every second of the day. I think back to before I knew what was causing it. I did the best I could but I somehow knew it was something that was going to kill me if they didn’t find it. Now, they have and my suspicion was correct. I just really hope they get it before it bleeds.
Can you tell me how you feel now and if you can tell any difference yet? I know it closes slowly but just wondering when one starts to feel better after the procedure. I’m sure it’s different for everyone. I hear it closes in 1 or 2 years. But how does one feel during that time?
KSue- Yes you are right they should not of let me be in control of the meds- I had them the first time but no one told me why I was taking them! So the second time when I forgot I said well just give them to me now. The new fellow explained that it did not work that way-
Yes since we dont sleep we cant remember stuff cause we are exhausted! I am glad your daughter is taking time off work to take care of you. Its good to have someone esp the 1st week.
For me the 1st angio/embolism the sound was almost completely gone when I woke up. I would occassionaly hear stuff but I think it was the glue moving around. Which of course they did not explain and I learned it on here!
I was super constipated both times so make sure you have some stool softeners ahead of time or send your daughter to taco bell for some instant movement :)- I told my husband we should of thought if it the last time.
Now my brain was still recovering from my massive stroke (unrelated to my avm) so I actually had another stroke when I woke up. This is rare but just in case have your daughter bring a notepad. I know sign language but none of the docs did and when they got my husband to see what I was signing he said I dont know and I f…ing did not know she knew sign language- but he got a notepad and I was able to tell him I was in horrible pain and needed my stroke doctor- Plus they were in my head for almost 8 hrs cause it was more complex than the MRA showed. Which I think caused the stroke -
The second angiogram they found it sealed itself so I did have some additional head pain in the occipital area which started after the very 1st angio/embolism and I still have it but its gone down a lot and just feels like someone is pulling my hair and its a bit itchy.
They use Iodine and radiation so for me I am allergic to the Iodine and I think most feel bad from the radiation so its important to drink lots of water and flush your system.
You hopefully will be able to sleep better - I still have sleep issues but I think its related to the first stroke.
I was nausea so you might want to ask for zofran which dissolves under your tongue and helps you sleep too- I normally take 4mg but you can take up to 12mg.
I would just make your bedroom as comfortable as possible, Have the stool softeners, crackers, juice, mineral water. WHatever your favorite comfort foods and drinks are stock up. Esp since your daughter will only be there a week.
Oh I for some reason get horrible eczema all over my face I found using coconut oil clears it right up. Also dont be freaked if you loose a bunch of hair it grows back- I think its from the stress of surgery and the radiation.
Bring lip balm to the hospital and I had trouble focusing my eyes which I still have in the ams-
We know our bodies and its hard to find a doctor who knows about these avms. When I told my stroke doctor about my symptoms he said You cant have another rare thing since my stroke was so rare…I said oh you are just getting to know me…and sure enough - So now all the Stanford doctors know they must think outside the box for me and my sister and mom who all have rare things.
You might feel fine after I know when I was first on this site having my freak out there was a lady from Kansas who went to Stanford and she had a I think 3 or 4 angio/embolisms with in 2 weeks and felt fine.
I also had a little sachet of lavender that I could smell that calming. Dont be afraid to ask for pain meds.
Please keep us updated!
I will be thinking positive thoughts for you-
It took me about a month to be able to go back to my normal routine but again I am not a good benchmark cause I was still messed up from the 1st stroke.