Hi,
I had a flow diversion exactly 1 month ago. It was an unruptured aneurysm, so I am not sure if I’m in the right group.
I did start back at work, I am a teaching assistant. But I have to take frequent breaks and put ice on my head, Is this normal? My neurosurgeon kind of made me feel like I should be okay by now. I find everyday tasks to be exhausting. I have tried taking walks, to stay active, but I get so tired and my head start to hurt. Has anyone else had trouble getting back to normal?
I appreciate any feedback . If this is the wrong group for me,I apologize.
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Good Morning @Beth24 and welcome! You are in the right group! Every member here has some type of relationship with a cerebral aneurysm be it for themselves, of a loved one, we even have some members that don’t quite fit in a box.
Headaches and exhaustion are quite a frequent occurrence for anyone after a brain procedure. I’m hopeful other members will chime in here, please be patient as we are a world wide support group covering all the time zones. I’m not sure why Neurosurgeons always say it’s not because of your procedure when just about everyone here experiences the same symptoms, but they do. I’m also unsure of why the majority of Neurosurgeons don’t tell their patients to stay hydrated and increase their protein, but they don’t. So I love to pass on what the RDN told me in Neuro ICU, and my Neurosurgeon has preached over the seven years she’s known me - increase your protein, eat at least 90 grams a day; hydrate, hydrate, hydrate. Did I mention hydrate? I’ve also found staying away from carbs is a good idea as they tend to make me tired, perhaps they do the same to you.
A few months ago, one of our members shared that she was told to drink at least two gallons of water a day for a procedure she had. I’m a little embarrassed to say that I don’t remember her name or when she shared her post. I do like to give credit to a person. Unfortunately I don’t remember everyone’s name on here, but I’ve always been bad with names. Once you get into the hang of drinking water, it’s not difficult. If you live in an area that has nasty water, try using some type of filter mechanism or add some flavoring to it. I like those lemon packets that hospitals have and you can find them in the grocery stores now. When it gets really hot, I will sometimes add some flavored vinegars to my water just to have a different taste. One of my favorite vinegar combos is coconut and pineapple. I use very little, just enough for the flavor. Another thing is to put some honey in your water, which I do occasionally but I like it in my hot coffee and tea LOL.
Our brains do need a lot of protein and water to recover, so try very hard to find what works for you. You might also want to ask your Neurosurgeon or PCP how much they recommend.
All the best, and again welcome!
Moltroub
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Hi @Beth24,
I agree with @Moltroub that you have found the right place! I am so sorry you are feeling fatigued and your head is hurting. I had a FRED flow diverter put in my left supraclinoid artery exactly 8 weeks ago today. I did feel tired for the first 4 weeks (I wake up at 5 am and think this was part of the reason), but feel pretty much 100% now. This aneurysm was previously clipped, but unfortunately “came back” if you will. I have not had any headaches, but I do believe that when you are really tired and have not had enough sleep, that can cause your head to hurt and for you to feel “off” in general. I felt like that after I had my son. Just not enough sleep, so I felt like I was walking around in a fog all of the time, and honestly I felt ill in general. I do walk 3 miles each morning and that really helps me start my day off in a positive manner. Getting outdoors and breathing in fresh air does amazing things for my soul. I also practice yoga and try to lift weights at least 3-4 times per week. Do you think you can get some extra time off of work to heal?
I will caution that one can actually drink too much water, and when this happens a condition called hyponatremia occurs. Hyponatremia is when your kidneys cannot get rid of the extra water and the sodium content in the blood becomes diluted. It can actually be life threatening. 2 gallons is way too much as men should be drinking a max of around 15 cups per day and women around 12. There are 3.79 liters in a gallon. @Moltroub I have always been told to drink water after an angiogram or CTA/MRA to flush out the contrast, but never 2 gallons! The caveat I would add is how much someone is sweating. If you are sweating a lot, you need to drink more water, however, under normal circumstances, the guidelines above are appropriate.
Hugs @Beth24,
Kim
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Hi Bertha,
I have had two pipeline embolizations for unruptured brain aneurysms, and each time I took 3 months off from work.
I like this group because you can identify with many members and learn from others’ experiences.
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@phoenix, yes drinking too much water can be dangerous, but from everything I’ve read and been told, it’s individual and can’t be decided on a this is the rule for everyone. Sort at like body temps, there’s “the average 98.6” and then there’s the individual’s average body temp…It’s also why I recommend folks speak to their doctor. I stay outside keeping busy a lot, especially during anytime it’s not raining, or we are getting ice. On the rare snow occasions, I can be found outside most times. Doesn’t matter the season, I prefer outside to four walls closing in. LOL And in our humidity, I sweat a lot, sometimes it looks like I ran through the sprinklers. I never sweated like this when I lived in the West Coast, which to this day amazes me.
And because my friend, you are always challenging me, which I love by the way! I found this older article:
And here is a newer article, yes I realize it’s about weight loss, but there’s a new formula going around town which I find fascinating:
And because I respect and admire @phoenix33 , I wanted to present her side in articles:
This one may offend some, but remember I worked in Child Protective Services. Don’t read this if you get really upset with child abuse
What these last two articles explained to me is why my Neurosurgeon had me drinking so much Gatorade with my water.
Thanks again for keeping me on my toes!
Moltroub
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I had a leaking aneurysm and two others for a total of three coiling surgeries. My neurosurgeon said he fixed me. I have headaches every day and have to rest and ice my head. I’m sorry you’re going through this. I feel for you. I don’t think I could possibly drink anymore water/Gatorade. It’s frustrating. I have great support. I hope you do💕
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Thank you for sharing. It helps to hear other people in similar situations,. I was starting to feel like I am imagining symptoms.
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Many of us have/had unruptured annies! And that same group has had surgeries go well or not well, and have the same side effects as more or less serious cases. It’s all individual! That being said, I’m so sorry you’re not feeling normal yet. That is very frustrating I know. Some people take just a few weeks, and others months, and yet others years. I know that isn’t very concrete or even reassuring, but it’s the straight truth. Your best chance at your best recovery is to take it as easy as possible, throw around “I had brain surgery” frequently, and say “no” to most things so you can go rest. Rest, mental rest, rest, food and drink, mental rest, and rest some more. Forget what the surgeon says - instead listen to your body. The surgeons were just there to patch you together and keep you alive. Long-term care is up to you and other doctors (I know that sucks, but it’s another truth). And they’re also wrong - those headaches ARE from your surgery. They just USUALLY aren’t a sign of something gone wrong, so the surgeons aren’t interested. Recovery is entirely individual - doctors use a one-size fits all measurement that doesn’t actually fit most. Come here anytime you need reassurance, advice, or just want to scream at the world and how unfair it all is. We’ve all been there and still fight the good fight, and we’re here for you!
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Hey Beth,
Welcome to Ben’s Friends.
Unfortunately this is common, VERY common. Post neurosurgery I was told ‘All fixed’, only it wasn’t. When I queried why I was having odd symptoms it was all made out to be a psychological issue, like we choose to be in this position. Within 6months I was back having further neurosurgery because it seems it was not ‘all fixed’ at all. Things did settle down somewhat for a while, about 12years. When I say ‘settled down’, I still had good days and bad days, it’s more that the bad days become less frequent. Then I had another ‘incident’ requiring further surgery, then more surgery, then even more surgery.
That exhaustion, that’s normal, well, it was the same for me. All of my normal tolerances were reset. Previously I was working a 40+hr week. Post surgery even doing 20hrs was too much. This recovery thing is a slowly, slowly process. Over do it now and you can set yourself back months (or worse).
The headaches, can be awful shocking. The medicos asked me to give mine a pain rating out of 10. I said ‘15’ ‘Ohh, it can’t be THAT bad’ says nursey "Well, you laydown on the floor and I’ll boot you in the head…’ She was offended, but nowhere near as offended as I was at her comment. Pain is one of those things that doesn’t have a set measure. A huge pain felt by a person could be acceptable for another. Trying to express or explain pain intensity, especially headache pain, can be very difficult. Brain pain is like no other pain. A sore arm affects you arm, brain pain can affect EVERYTHING. One of the theories professed to me by a neuro was that the brain itself does not actually have any pain receptors, so it’s not actually ‘brain pain’ at all. Personally, I didn’t care for their theory, my head is BANGING. That’s a headache whether that’s brain pain or not. They will try to convince you there’s nothing wrong, but you know your body better than anybody and you MUST listen to your own body.
This is also common. I think part of the theory here is that if we’re questioning ourselves at least we aren’t questioning the medicos. At one point I directly questioned the surgeon… Ohh he didn’t like that one little bit, in fact, he got real anti. This is not imaginary, it’s real and in it’s bad stages its all very real.
I must also agree with @Sarah_D
AND
As I tell many neuro patients “Now is a time to be kind to self. Don’t over do it. Don’t push your limits and listen to your own body. When it says stop, you stop.” I say all of this because I didn’t and the outcome has been life changing. I pushed my limits, didn’t listen and pushed some more doing myself a major injury. The medicos now tell me I’ll be unable to return to my former role which has been a very bitter pill to swallow. Take the time you need to recover.
Merl from the Modsupport Team
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Thank you. It is comforting to know I am not alone. It is very frustrating to be made to feel like I am"milking" it, or be told, you should feel better by now. I appreciate the advice.
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Beth24, welcome and yes you are in the right group. I had a stent 1.5 years ago and still recovering. What you are experiencing is typical but some of the doctors downplay the effects of the procedure. I had severe headaches, neck pain, anxiety, and fatigue. It took me over a year to feel somewhat normal so I had to take a lot of time off work. Looking back, I should have taken the extra time to rest instead of trying to return to work too early. My neurosurgeon said I can return to normal after 2 weeks. That was far from the truth in my situation. Fortunately, I found this site to be extremely helpful because others can relate to similar experiences with great advice. Take it easy and be kind to yourself. Rest as much as possible so you can heal physically and mentally. Wishing you the best.
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Thank you for posting this. I’m also in a similar situation. I had stenting surgery on May 18 and am also experiencing daily headaches and like you my surgeon is pretty much denying that they are linked to the surgery. Thank you to all the members sharing their experiences.
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Hi @Beth24,
I’m very sorry to hear about your ongoing symptoms! I similarly just had my flow diversion (stenting) procedure for my unruptured aneurysms a few weeks ago- on June 2, 2021- and I am too am having ongoing symptoms (headaches, visual auras, and dizziness daily, along with fatigue/lethargy, anxiety, etc.). In terms of why I’m having these symptoms, my doctors have told me it could be some swelling/inflammation from the stent being placed, or alternatively, it could just be something chronic and happening ‘just because’ (possibly no identified reason to chalk it up to).
My headaches vary in how they present and how severe they get, but I do find too much screen time brings on pressure-like headaches, and bending up and down alwayssss brings on like a pounding headache. I also am very sensitive to light right now.
In terms of visual issues, I experience visual auras daily as well. Sometimes they present as if I have water in my eye where I can’t see clearly, and other times it looks like I have shooting stars or like light flashes in my visual field. I find these come and go throughout the day, and usually last around 30 mins at a time.
Unfortunately, I’m told by my doctors and others in this group that this is quite common. Thankfully, I have noticed my visual auras have started to decrease a bit, but my headaches are still pretty much daily and are fairly awful regularly. My doctors have told me to just take the max dose of Tylenol as needed (following the bottle directions) to deal with my headaches, along with lots of rest.
I’m supposed to return to work next week, and my job requires constant screen time as well as a lot of stress (I’m in a management position as a public health nurse). I’m very anxious about how I will feel once back, but thankfully my doctor is very supportive and will pull my hours down if needed (ie if my headaches are triggered too much from the job).
Hoping that sharing my experience might provide some further insight and/or provide some comfort in knowing you’re not alone!
-Cassandra
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@CassandraJ you might want to ask your doctor about ways to filter the blue light from your screen. I remember a post about it but can’t find it. Here’s a quick article to get you started on any research Blue light filtering glasses can protect you from digital eye strain
All the best
Moltroub
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I just got new glasses with the blue light filtering and they are amazing. It really helps with the computer. I had brain surgery 11 yrs ago for an unruptured brain aneurysm on my carotid artery behind my right eye and have another on the same artery on the opposite side they could not get to. The neurosurgeon is still “watching” that one. I agree, take your time in recovering as long as it takes. For years, the neurosurgeon couldn’t explain my daily headaches. I didn’t have them before brain surgery. I still live with them and have migraines about 3 times a week. It Sucks. Finally, I went to a Neuroradiologist that looked back through all of my scans because they saw an infundibular (which looks like an aneurysm, but won’t rupture), and this doctor was the one that finally told me that my headaches were due to the brain surgery. I am getting treatments for them to help make it easier. We as patients or our family/friends, have to be our own advocates. Always question everything. It is your brain and your body, the doctor that will walk out of the door and go to the next patient will not (hopefully) ever have to endure what we as brain injury patients have and will. I always try to find the bright side to any situation, life is short, and I intend to enjoy ever minute I can. I have a choice each day to either worry about what “might happen” and ruin my day or get up and think of all the wonderful things I have to be grateful for. You are not alone in feeling the way you do. I’ve gone through so many different feelings throughout the years (sad, mad, depressed, anxiety, stupid, I’ve got this, ooops no I don’t, I remember that, or do I?.?.?, etc…), I still go through these feelings periodically… I would look into seeing a Migraine/Headache Specialist which will be a Neurologist, they will be able to provide medications and other treatments designed for headaches that will not go away in the short term and long term. Hope this information helps. I got a little off track…
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Thank you for your response I will be seeing the neurologist next week and hoping to get some more answers and /or relief. It is frustrating,. I took my daughter to a softball tournament this weekend and had to miss half the games because I had to stay in the car with AC on and lay down. The pain was so bad. I considered going to ER but as I was away in another state I was too nervous with the stents, afraid they wouldn’t know what to do for me.
Yeah I get that. I had to go to an ER in another state once and they had to retrieve my records from the hospital that I had brain surgery at. It was a literal pain on top of the pain I was in. Good luck at your neurologist appointment, I hope they can help you!
Well said!
@Beth24 i was thinking about your heat intolerance as I was getting a bit hot trying to level a place in the yard. My best friend (a gadget freak) had gifted me with a personal neck fan. I need to get it charged up before I start work today. It may help…
All the best
Moltroub
Thank you, I will give that a try, I truly appreciate this forum. It makes me feel better , I have been feeling like I am imagining symptoms. Doctors keep saying I should be feeling fine.