Hey Merl,
Thanks for reaching out and reassuring me of the support available. It really means a lot to know that I’m not alone in this and that there are people who truly get it. Those “Oh, I get headaches too” comments can be frustrating, and people assuming they know what you are going through when really they have no idea.
Thanks again for letting me know of the community support.
I’ll definitely reach out if I need anything. Thanks again.
Jojo
Hey Jojo,
How’s your blood pressure doing?
Here are the last recorded results through my GP
I don’t see that she has put up anything more recent, so I’ll be asking her for that information.
28/08/2024 134/86
14/08/2024 144/86
05/12/2023 120/80
05/09/2023 120/82
11/03/2023 152/96
Not bad at all! 
I learned a couple things recently about BP readings. The young man that’s helping again this year has had heart surgery. He was supposed to go to the surgeon and have his wisdom teeth removed but his BP went higher than a kite. His cardiologist told him last week he has “white coat syndrome”. Apparently his BP skyrockets every time he goes to a medical appointment except with the Cardiologist he’s had for 20 years. The other thing I learned was if the RN doesn’t use the proper sized cusp it can give an incorrect reading. I went in a bit ago for my wrist, my BP was extremely high without the associated pain, NP retook it with a size larger and I was back down to what it normally is. If they have to take it twice, make sure they use the other arm or it will give an incorrect reading.
That’s interesting! “White coat syndrome” ah…is that what its called. That happens to me all the time, I didn’t click about the cuff, or changing arms due to anxiety.
Good to know about the cuff size for taking BP readings. I guess when you are anxious about an appointment, or follow up post scan/results etc. its understandable your mind is so focused on that, although if the BP reading is high could easily increase the readings. It’s good to know that the nurse was able to get a more accurate reading by using a larger cuff. And yes, using the other arm for a second reading is a smart way to ensure accuracy.
Thanks for sharing this! It’s always helpful to be aware, especially when it comes to something as important as blood pressure.
How is your wrist doing now?
Thanks for asking! Not well yet, but I do my exercises as ordered so 3 times a day. I’ve got three hard spots at the base of my thumb that the OT said looked like his clients with Rheumatoid arthritis and said to reach out to my Rheumatologist. The bumps are calcium buildups common with DM. But I think the exercises are helping them to go away🤞
Thanks for the update! Sorry to hear you’re still not feeling well, but it’s great that you’re keeping up with your exercises. Hopefully, they’ll continue to help provide the write amount of support for you. It’s good that you’re reaching out to your Rheumatologist for further advice too. Fingers crossed that the exercises will make a difference!
Take care
So here is what I was told on 9th April 2025, and I have finally just received my letter from that appointment only a few days ago from Interventional Radiology
Problem list:
This is the reply I got when asking if another MRI would be performed prior to treatment:
I have just sent them the following email so waiting on a reply
Clarification Regarding MRI Prior to IR Treatment
Dear [ ],
Thank you for your reply and for confirming the current steps moving forward.
I appreciate the Doctor’s review of my imaging. I just wanted to clarify that given that my symptoms have remained stable, is it standard practice not to repeat an MRI before treatment in cases like mine? I’m simply asking for my reassurance that the imaging already on file is sufficient for safe and effective planning of the endovascular embolization treatment.
If confirmed an MRI is not required based on the Doctor’s view point, will there be any form of imaging possibly on the day of treatment for a real-time assessment prior to?
So just waiting patiently now
Hey @jojo29 ,
I was told something similar early last year. I was told I needed another craniotomy. To say I was reluctant would be a HUGE understatement. I asked for a differing scan and was told “The Dr doesn’t think it’s necessary…” I explained ‘my request was not for the Dr, it’s for me. I want to view the before/after images… …if they’re going to go inside again, I want to see the changes’. With lots of grumbling and groaning from the medicos, the scan was reluctantly ordered.
As it turned out (in my case), those images did alter the opinion of the medicos and I was able to avoid further surgery. Now, I do say ‘in my case’ as every case is different and the Dr’s may have a differing view. BUT, even if it’s just to put your own mind at rest, a request can be made.
Merl from the Modsupport Team
Hey @ModSupport (Merl),
The fact that you had to justify it was for your own peace of mind says a lot about the professionals that are supposed to listen to their patients.
I do want this for my peace of mind and to be honest, just because a doctor says its not required because ‘The Doctor does not see the need for another MRI prior to treatment, as it is unlikely the aneurysm has changed at all or enough to warrant a repeat MRI.’
That’s not fair they get to determine when you can or don’t require a repeat imaging just because they believe it is unlikely (not confirmed or known) that it hasn’t ‘changed at all’.
And so, it will be interesting to see the outcome/reply to my email that I just recently sent.
I’m happy you pushed them, and it did show there was a reason behind the request. You know your body better than anyone else, so good on you for pushing it.
This is the difference between free medical care, where the doctors know they have a fixed pot of money to treat as many patients with as possible and medical care that is paid for by the patient or their insurance company: the onus moves completely the other way. Neither is perfect, though as a very ordinary citizen of the UK, I’m happy with the free-at-the-point-of-need National Health Service.
Even when we have self pay insurance, the doctors have to provide a good reason for another image to be performed or the insurance company will deny it. I’m unsure that either way is completely 100% perfect but it sure helps to be covered.
@jojo29 have they replied to you yet?
Hi
Yes but they shocked me by moving me from 5 mobths to end of June.
I’m now having my procedure on Wed 2nd July.
I’ve had a chat with the Neuro Doctor via phone a couple of days ago. Waiting on email confirming all details for my pricedure time etc
Thank you
Jeeze Louise, that’s quick! So hopefully you’ve read my Neurosurgeon’s mantra - “ Hydrate, eat protein, hydrate some more, rest and repeat”. It’s really important to be fully hydrated all the time of course, but even more so whe we get stuck with needles as it makes the experience much better for the RN sticking us, the surgeon putting in the catheter and us. There’s lots of advice on getting yourself prepared on a lot of posts. I call it getting your house and House ready…do any of the heavy cleaning and yard work done prior to your procedure. If your surgeon goes through the femoral artery you won’t be able to for a couple weeks at least. There’s all kinds of rules you will have to follow on weight limit etc. For me, it was just like our members shared, on the radial artery, a very quick recovery, still have rules but not as many. Also have easy meals to prepare especially if you’re the “main cook and bottle washer” as my Dad called my Mom. Have things in easy reach you like to do by your favorite place in the room you relax in, den or living room. One of my rules after each procedure was to drink 3 bottles of Gatorade daily and twice that in water for 2-3 months. I’m allergic to the dye so it’s imperative I push it out of my system but it’s really important for everyone else as well in my opinion. I think keeping hydrated really helps curb headaches and wonkiness we experience afterwards. Make sure all your paperwork is in a readily available spot in case something goes awry. Things like your checkbook, bills that need attending to, life insurance, information on if and where you have any investments, etc.
Realizing folks don’t like to discuss things, this is not the time to minimize the importance of a will. The third procedure, not counting the diagnostic ones, my Neurosurgeon thought she might end up doing a craniotomy even though I was not a good candidate in her opinion. The risk of something going wrong was very high. Like you, it was going to be a relatively quick turn around from my diagnostic procedure to the repair attempt (1 week). We called my parent’s elder care attorney and asked her to go over our old original wills. It was a great thing we did because they were not drawn up correctly and literally were not worth the paper they were printed on, was the attorney’s words. She and her paralegal burnt the midnight oil, we went in around 8 pm and signed them. Then her paralegal had to get to the courthouse the next morning. We were about five minutes from the hospital when they called to let us know everything was stamped by the Clerk of Court! That’s cutting it close. Ended up she chose to do the balloon assist and not a craniotomy, she said she just didn’t want to take the risk as odds weren’t in my favor. I had a job working with families and unfortunately there were fatalities of single parents which left the children with no legal caregivers. Those children had to enter the foster care system which is a bloody nightmare for them and their families. It is extremely paramount that parents have wills naming caregivers so the State knows what to do with them. Sorry I’ll get down off the thing (can’t remember the word)
The House with the capital H to me is attending to your spiritual and/or your religious belief’s, Do what you need to do. I always have a conversation with my higher power to watch over my medical team and keep them clear headed as well as my loved ones. I must ah e forgot on my last procedure as I got into a bit of a pickle when the RNA didn’t give me my shot for the dye. My Neurosurgeon once again had to save my life and tell the woman what to do. I’ve learned many things from our members over the years, one is to keep a copy of my medical record. Interestingly enough, the anesthesiology notes from that procedure are no where to be found. We have to ask for those records separately at the hospital I go to, some places include them in the full medical record as they should. Again my opinion, I am full of them today.
I wish you the best of luck with your procedure. Don’t forget to hug the ones you love when you see them!
Thank you so much for this message, I really appreciate the time and thought you put into sharing all of this. There’s alot here that’s helpful. I’ve definitely taken the “hydrate, protein, hydrate, rest, repeat” mantra into mind and heart, so thanks!
I never thought about it like this “getting the house (and House!) ready”, but it makes sense. I’ll be cooking alot of my own meals, as I partially live at home, and also stay with my partner (not live) just sleep from time to time, and with there being a communal kitchen does make it a bit tough to cook at certain times as other tenants are utilising the kitchen, so having easy meals on hand and stuff within reach is a good idea. I need to keep on top of the hydration part, as I am on/off with the amount I consume, so I’ll keep pushing the water and a drink to replace lost electrolytes.
I’m really grateful for what you said about paperwork and wills, and keeping everything close by and handy. It is a tough topic, but you’ve given such a great reason not to put it off. Definitely something I’ll try to sort over the coming weeks, better to be prepared than caught out last minute.
Thanks again for sharing your journey. You’ve given me more peace of mind and a checklist I didn’t know I needed. Sending you a big warm Kiwi hug and yes, I’ll definitely be keeping my family and partner close 
I love hugs and kiwis too! Hugs back! Maybe your housemates or partner will step in to help some🤞. Remember you can’t be home alone for at least 24 hours, longer if they’ve done an oops, dag gummitt on you.
I hope your procedure and recovery go well, @jojo29 - I had a stent/coil embolization of an ICA pseudo aneurysm two years ago. I’ll be thinking of you next week!
@jojo29 I hope your procedure this week goes well, and that your recovery is thorough. I read that you’re having yours on July 2. I’ll have mine just after on July 3. Best wishes.
I am thinking (and will still be thinking) of you both this week.
FWIW, I was ridiculously happy after my pipeline was installed. Odds on, I knew it was the beginning of the end for my annie - and it was! It was such a relief to be on the offensive after all the time we spent playing defense. I am sure you will both do fantastic!
Sending healing thoughts your way!
Fin Whale Fan 
