Hi everyone, been awhile since I’ve posted. I’m doing okay, just struggling with pressure “headaches”. It’s where my AVM was when it ruptured, so it’s causing me a little anxiety. It’s not exactly pain, just uncomfortable & annoying. The only way it goes away is if I lay on my pillow.
I don’t want to have to go get another CT scan or an MRI because the angiogram I took back in December said I was fine. Could you shed a little light on the situation?
I wish I could be some help, but not sure I can. If his were me, I would do a couple things, firstly make sure I was hydrating properly, and I would start keeping a journal to try and see if there is anything that may be consistent that I was doing that might be contributing. I do get some strange head feelings when I begin to get dehydrated.
I would always have in mind to follow up with health persons, and certainly would consult with them. You can never be too cautious. If nothing else suggestions for managing may result.
I have to agree with JD on all of this. Hydration is very important, especially in regard to our brains. A high percentage of the brain is water, it is also cushioned and surrounded by CSF. The CSF circulates around the brain and spine to nourish the brain and remove waste, this fluid needs to be exchanged by the body daily. Hydration is needed for this to occur. We produce around 600ml of CSF a day if the circulation or production of CSF is altered or reduced symptoms will follow.
Head pressure is a daily battle for me. I can feel the pressure building behind my eyeballs and it affects my sinuses and my whole face. When I’ve mentioned one sided pain to the dr’s they have not seemed too concerned. My primary side for pain is my right side, the same side as the craniotomy, but it’s been dismissed as ‘healing pain’ and that’s years after the healing has completed. Every time I’ve asked about or described my symptoms, the first thing they want is pictures. My explanation is often seen as hearsay. They can’t see inside of the skull, they NEED imaging
We can only give one per post, but JD deserves a couple more too. Firstly for his comments regarding ‘keeping a journal’ and then for their recommendation ‘follow up with health persons, and certainly would consult with them’.
I had been having odd symptoms post surgery and saw my pcp and he wrote them off as insignificant, so I ignored them. Things progressed further and I had an upcoming neuro appointment, so I waited a bit longer. Well, when I saw the neuro he was… let’s just say ‘less than impressed’. He ripped into me for not following up with him sooner. The fact that I needed a pcp referral to see him AND the pcp was less than helpful in this regard, I had no other options. It actually turned out I had a major issue which needed neurosurgical intervention and within 3 days, I was back in surgery. The surgeon’s direct words to me were ‘Get a new PCP’, which I did.
Look, what’s the worst they can say "Ohh, it’s nothing to worry about…’ or ‘OMG, you’ve left it too long for a simple remedy, things have progressed too far for ‘simple’…?’
Go have a scan.
Merl from the Modsupport Team
You’ve had a bleed and I never had a bleed but I found my head felt weird as my DAVF developed somewhat and didn’t immediately feel non-weird once I’d had the embolisation.
However, 5 years down the line my head feels 100% – no weirdness left. My main feelings were an odd sensation when driving / being driven / walking. I attributed it to different pressures in different places and the fact that my DAVF was pumping into my transverse sinuses and past my ears (= dizziness, balance issues). It faded but it faded away really slowly over at least 18 months to 2 years.
If you get concerned or anything significant happens, always go to the doc. Do not pass “Go”. Do not collect $200. But otherwise, you’re fairly early post op, it may just be you’ve got plenty of getting used to to do.
Thank you for all of your replies. I drink 2 bottles of water a day (32 OZ), some maybe more, some maybe less. I know the recommend is 64 OZ, there is really no excuse for why I don’t. I will definitely ask my doctor whether I should get a scan done.
I supplement my hydration with some added electrolytes, particularly when exercising, really active or hot conditions. Although being from Wisconsin you likely need a few more weeks before it gets too summery! I live in Manitoba but spent a weekend in Madison in 2019, loved it, was 13 hours driving one way. I use a couple different ones, Nuun, Biosteel and Skratch but there is quite a few. I used to just drink pedialyte but these fancy sport ones have more flavour! Might be worth a try. Take Care, John.
Any procedure to resolve the AVM? Or, did I miss something?
I had an embolization, which completely obliterated my dAVF/AVM - where the rupture happened, well - I call that a “special area” - it’s where I was once hit with a huge statue(way before being diagnosed with my AVM, since no CT was performed), my gash that was all the way down to my cranium was stapled & I was sent back to work.
In that area now I get strange & odd feelings fairly constantly. Tightness, pressures/pounding type feelings - specially(like mentioned) I am dehydrated or go “under load” - like rn, I am still powerlifting(not as much as I used to) - then the feelings fade, and just roll in/out - as they do on my right side of my head where the AVM was pumping the blood supply to
Shoot, today is my one year eight month anniversary since the rapture(I mean rupture). Lol
I had a craniotomy to remove the AVM and my gash is pretty massive (I don’t mean to brag), lol.
Question, does your hair ever grow back? That’s something they don’t tell you when they cut a line the size of water bottle on your head.
I’ve gotten used to the weird sensations that goes on in my head, but not the pressure & pulsating feeling that goes on up there. Quite frankly, I don’t know if I ever will!
Well, holly shit!(pardon my language)
After a resect, I would imagine just about anything is considered “normal” - as far as sensations go.
How are you doing?(If you don’t mind me asking & how long has it been?)
A craniotomy/resection frightens the daylights out of me - no need to hold back. But, shoot - it’s def something to brag about. Why not? Look what you have surpassed - compared to an embolization, it’s like comparing a brake job to a engine rebuild(in my automotive terms).
As far as hair growth - I don’t even have any to start with, but who knows - wear that thing proudly - shit. . . I seen a guy at the gym a few months back with this gnarly ass scar. You can just tell it was a whole left or right(I can’t remember the side) was a resect - He was bald like me, and the only thing I thought was - Rock the f*** on!
There was another guy I seen at the gym, but haven’t seen in prob about a year. Wow, a huge scar - he shaved the sides of his head so it fully showed. I used to see him all the time, way before my whole AVM ordeal. When he had it done, then his recovery. We never spoke - but, this guy was tough as nails. Outlifted me like no other after he recovered - that is just so impressive - again, to me at least
Maybe it’s just me - the scars go much deeper than a tattoo, it shows how real shit is < just my .o2 Cents
Yes it does grow back, well, most of it. The only place it doesn’t grow back is across the incision line (Where they’ve joined the skin back together).
When I had my craniotomy they only shaved one side of my skull and having long hair the whole lot had to come off, to grow back evenly. When it regrew, during it’s ‘spikey’ stage, nothing grew over the scars, making them more prominent. Over time I’ve allowed the hair to grow back to length and the fall of the hair covered most of it.
Now, being male, the hair has thinned rather drastically with age, making both the scarring and the indentations of the craniotomy more obvious. Some people have made comments like ‘Ohh, look at THAT…’ I try to joke about it 'When some people go bald they have a bowling ball head, I’ve got a bowling ball head too, it’s just mine has the finger holes (Indentations) ’ It can be rather disconcerting when others point it out and due to this I now wear a baseball cap to hide it all.
Merl from the Modsupport Team
I get those types of headaches every now and then. Actually recently they’ve been back after having had zero type of headaches and OMG I can relate in that it makes me paranoid as hell. I actually ended up calling my doctor to see when my next angio is. It’s not until November so I’m like ughh!! So now I go every two years it leaves more room for paranoia. What works for me is normal Tylenol with soda or coffee (aka caffeine) and then that sort of headache calms down. Anything to avoid taking my Tylenol 3s. Those sort of headaches definitely make stop and drop everything I am doing and brace myself because they’re strong!
I’m doing the best I can, some days are better than others which I bet a lot of people can relate to. It’s been about 10 months since it ruptured, June 6th, 2021. Crazy how fast time flies when you’re not exactly having fun, but it’s been a lot of doctor appointments & therapy in the beginning.
I kinda figured that but didn’t want to believe it. My hair is about 4-5 inches and covers my scar well. Like you, they only cut half of my hair off to make the incision, but I cut the rest off when I got home from the hospital, it was just easier that way and can save a lot of shampoo & conditioner!
I used to be really insecure about my scar (I used to always wear a hat) or what I looked like with short hair. Being a girl it hurts when people say “young man” or refer to me as a boy. I don’t let it bother me anymore, I figure hair doesn’t define gender and people don’t know what you’ve been through so pay no never-mind to it.
+1000 for that one and it’s the same for many rare conditions. Others may pass judgement on the 10% they can see, but have no idea of the other 90% we’re trying to manage. I’ve had people tell me ‘Ohh you look awful…’ and my response ‘You want to have a look from this side’. Honestly, they have no clue. Being told I look how I feel doesn’t help one bit.
Merl from the Modsupport Team