Background: craniotomy of an unruptured 8mm aneurysm, Left ICA on 11/07/17.
Headaches: worst during flights cross country (Los Angeles-Boston), whenever weather changes and driving through 5000 ft mountains.
Local doctors are afraid of treating me because of a craniotomy. They always push me back to my surgeon. My surgeon’s residents always told me the headaches are not related to the ‘surgery’.
I was just told today by a resident of the surgeon that I should look for a migraine doctor (neurologist). I am planning for a long flight (from the US to China), and join a group traveling among mountains (from 3000ft-5000ft).
Any of you had experienced such headaches? They are mostly mild, occasionally bad that I have to lie down after sipping some coffee. (Ironically, zipping coffee seemed to calm down the headaches.) With such conditions, would you take a chance to fly (13 hours none stop), and hike?
To make things more complicated, I haven’t treated my neck pain after a minor rear-end accident due to the findings of an aneurysm. My pain doctor said the pain in my head could also result from the un-treated neck as well. Oh, well!!
Perhaps, you can postpone your trip since you already know that high altitude and flying affects you adversely and currently, there is no diagnosis and treatment. International flights would not be fun if you are having headaches. In my case, my aneurysm ruptured affected my hearing on my right side. I took a flight and had severe crippling ear pain (ear fullness) and almost complete deafness in my right ear for 2 days. After a consultation with Ear, Nose Throat, they recommended an earplug which was a great treatment so I now can fly without any serious complications. If you do get a great consultation, try the treatment in a location that gives you problems (mountain driving). If the treatment is effective, then I would proceed with your international trip. Otherwise, you will be in discomfort and questioning what is wrong without an answer. For post surgery Neurological issues, I found that a great Neurologist is more helpful than the Neuro-Surgeons. It makes sense because Neuro-Surgeons are highly skilled in the surgery itself but post surgery neurological issues may involve Neurologist along with other specialists like Ear Nose Throat, Eye, or pain specialists. Or perhaps, a pain specialist who deals with post craniotomy patients. My Neuro-Surgeon was great and very helpful but specialty Neurologists were my go to physicians addressing my post surgery Neurological issues. Good luck!!! If you have further questions, please reach out.
Thank you for your timely reply. Special ear plugs? Are these the ones that swimmers wear, foam or with flaps? Interesting, I shall go see an ENT since my insurance allows me to chase after good doctors before July! (PPO) I am close to a 5000 ft mountain now. With an hour trip, I should be able to test it out. Or, even when I am at home, I should wear it because I can often ‘feel’ the sharp change of the air pressures now. I have an app that alerts me when the ‘rate’ of change is faster than normal.
You are totally right about the neurologist. My disappointment is that the doctors I found are reluctant to ‘treat’ me once they heard that I had a craniotomy. They always tell me to ‘go ask’ your surgeon. That is so frustrating to me. What can my surgeon do for me?
The ear plugs that I use are the foam type. I bought them from Walgreens. But, please keep in mind that I had vestibular/auditory loss from my aneurysm rupture. My ENT recommended foam ear plugs as treatment and it worked for me. However, in your case, it might not be the treatment.
Does your hospital/Neuro-Surgeon’s office have a portal that you can communicate with. The reason is that your issues may be related to the craniotomy. The key word is barotrauma where a patient is affected by changes to pressure. Here is an interesting article on barotrauma and craniotomy. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3809443/
Crazy as it is but today is my 4th Anniversary of my aneurysm rupture.
Wow! Congratulations to your 4th anniversary of the recovered rupture! It must feel so strange that you have a totally different life after that rupture!
I read the linked article. I will ask (neurologist?) about the barotrauma thing. My problem is probably many-folds. The minor pain (discomfort) is there most of the time but coffee helps. However, when it gets to be 3-4 pain scales, the barometric reading will always be up or down. Strangely, when the weather is very nice, I have a headache, and when the weather is getting worse, I get a headache. Occasionally, I woke up with a clear head. One time soon after a full meal (Souplantation), my head hurt so much that I had to rush home, sipped espresso and lied down. That night’s weather was bad.
Thank you for your information. I will follow it up with my doctor(s).
I’ve had a craniotomy and have 2 shunts in my brain. My headaches are fairly much constant I often explain it as “… it’s all sh&t, it’s just the depth that varies…”
My wife and I needed to travel from Australia to England last year and I was very concerned. The medicos all had varying opinions from no effect to don’t travel. I had taken a couple of domestic flights to test things out. Most were fine but on one we hit turbulence and that was nasty bad headache for about 3-4hrs post flight, but settled eventually. So we went, being prepared for the worst. The major flight (with a stopover) was fine and I thought ‘great, no issues with flying’. Whilst in England we flew to Amsterdam, all good, travelled through the mountains to France, no issues, flew back to London, no problems.
Then we took a short flight to Dublin and OMG, my brain was trying to explode out through my eyeballs. The headache was like post surgery. It was a killer. Why? I’m really unsure. It may have been the rapid accent/fast decent of the short flight, it may have been the turbulence (not that we had bad turbulence on that flight). It really did scare the daylights outta me considering I had a long haul flight back to Australia to come yet, but the long haul return flight was fine.
Some dr’s blame alcohol consumption whilst flying, but I don’t drink. Some blame caffeine. Some blame cabin pressure. But none have given me a concrete cause. I think there are so many variables both in flight terms and in surgical terms that it is a bit difficult to say with any surety what may occur.
Personally I’d simply say, be prepared for the worst. Anything less is a bonus. Have a stock of meds for those ‘just in case’ scenarios.
Hope it helps
Merl from Moderator Support
Occipital neuralgia, might be another possible thing, since the headache is also accompanied by numbness in my left hand sometimes.
What meds did you bring with you? I was told to bring Tylenol and take some before taking off. I haven’t tested it out yet since I ‘am supposed to’ fly in May.
What types of airplanes you flew? Some said that the newer planes have lower pressure (at 6000 ft) than older types (8000 ft). I don’t know whether it really matters or not. I am thinking I might as well stay on the ground and look up to all the planes that fly by. Or, I shall drive all the way from Los Angeles to Boston.
Do you have headaches when the weather changes?
Thank you for your detail descriptions of what happened in your flight. I can almost feel the pressure and headache!
Due to some of the countries I was travelling through and their drug restrictions I was limited by only taking a couple of Endone on the flight but I also had paracetamol/codeine as my regular meds. On the long haul flights it was an Airbus A380 but the Irish flight was a smaller Boeing 737.
Yes the weather does have an impact, but then so does sleep patterns, bright lights, loud noise, exertion etc So to be pinpointing cause/effect is near on impossible. Trying to get a dr to take any ownership is near on impossible too and they like to put it back on me. I’ve given up counting how many times I’ve been told “Ohh don’t worry, it’s all in your head” as if I don’t know that one already, but they are meaning psych and not actual physically. I can tell you the pain sure as hell is physical.
To be honest you are never going to know until you try, every patient is different and so is every symptom. I know of patients who have minimal side effects all the way through to individuals who are bedbound. So to be saying A+B=C is impossible although the dr’s may try to convince you otherwise, telling you they have ALL of the answers. They don’t. we have to manage the best way we can for ourselves.
Merl from Moderator Support
So true! Thank you for the sharing. I felt a lot ‘better’ knowing that I am not the only one who faces such problem where no doctor is willing to jump in to offer the help. The most common answer from them is “it’ll get better”. Huh?
I will need to make appointments to see a neurologist soon, whether I am planning to fly or not. I don’t think a constant headache is a small thing. At first I thought it’s a good thing to ‘gain’ some sensation on the surface of my head. Soon, that wakening of scalp skin brings more pain on the head. Who knows? Maybe the nerve is telling me it’s growing and growing…and growing. No wonder the doctors are quick to brush off my questions. They simply don’t know enough to offer me a good answer because they couldn’t. You are right, I’ve seen people who experienced nothing in the airplane soon after their craniotomy. I wish I were a neurologist so I may help everyone out here.
Thanks again to your post.
The dr problem is much more common than anyone will admit. I believe any invisible conditions can have the same issues and when it comes to the brain your statement of "Who Knows?? covers them all. An example of the human brain injury was compared to a computer. “Open the computer box, take a handful of aluminium foil flakes and throw them inside the box… …now what’s the result??” In the computer you’d have short circuits occurring over allsorts of components. Do exactly the same thing to 2 different computers and you WILL NOT have exactly the same result. So how can a dr have a brain theory of A+B=C? It is not possible, no 2 brains are wired the same way and therefore no 2 identical injuries can exactly the same effect, no matter what their textbooks tell them. The old theory of brain mechanics used to be that specific areas of the brain control certain aspects in the body. That theory has changed a bit and now they know that certain areas communicate with other areas within the brain before affecting the body.
Personally I have found that the dr’s and specialists have some great information, but they are not the ones dealing with all of this, as I say “…we have to manage the best way we can for ourselves…”
Merl from Moderator Support
One other note on flying – for people with migraines it’s critical to stay overhydrated while flying. 8 ounces of water for every half hour in flight, drunk during the flight.
I don’t know if it would help with headaches from anuerysms and shunts and whatnot but since it’s just water and non-invasive I thought I’d mention it, particuarly since I’ve done it and can vouch for the effectiveness when a person with migraines travels via airplane.
I’m ordering a pair of ear plugs to ‘take care of air pressure’ in case of migraine. It’s interesting… I will definitely drink water, a lot of water during the flight. I am waiting to see some specialist hopefully next week before my domestic flight. I used ice-pack again now and it did make a difference. I am guessing my nerves are telling me to listen to them. They are not happy with my surgery. Ironically, my son has migraine and I thought it skipped a generation until I am experience the never go away headache. I really need to make sure I do (or don’t) have migraines so my method of conquer will be tailored to it. Thanks again for the valuable information.
I am really glad that I was able to meet you in this forum. I have been fortunate that I had excellent consultations with numerous physicians where each physician gave a specific diagnosis but not as a whole so I was stuck with a lot issues without a clear diagnosis and treatment. It is like I had pieces to the puzzle but no one to guide to actually solve the puzzle. Fortunately, I found a Neurologist who reviewed the pieces and solved at least 70% of my issues at Year 3. I understand where I lot of physicians are coming from. After reading case studies of PICA ruptures (my aneurysm), there is discussion of symptoms that resolves itself over time if no stroke was found (infarct). In my case, I did have a small stroke (infarct) after this Neurologist reviewed my MRI scans which several physicians had missed. This Neurologist who reviewed the pieces and solved at least 70% of my issues at Year 3.
In your case, even though it did not rupture, it is still major brain surgery and your body is telling you that it needs time to heal. In my monthly survivor group, there are unruptured aneurysm patients who have post issues which sound common to your case.
Hopefully, you can find a great Neurologist. I am attaching a link. This patient did not have an aneurysm but suffered from seizures. But, it is great story when you find the special doctor who can give the correct diagnosis and treated with the most advance medical technology.
Now, I am very interested to find out who your doctor is!! (One of the doctors in the video?) If he is in San Francisco, I should ask for a referral from my PCP. Why not? My brother lives in Palo Alto. It makes sense to pay a visit before I change my insurance. The Cinderella’s glass shoes shall disappear soon in July. Yikes!!
If you don’t mind, please tell me his name? Thanks a LOOOOT. I need a reboot every day like my ever crashing computer. Though I no longer see any fluid coming out, I am suspicious that there is something going on. My head has nerves crawl through my head, off to the incision on the head. Sometimes, I can feel a ‘click’ when it’s quiet. A little reminder to my forgetful mind that the brain is still healing I guess.
Thank you again, and again!
Something I forgot to mention – you need to super careful to stay overly hydrated while traveling in the mountains. Altitude sickness is a very real thing (my mom almost died from it and she has no particular chronic illness). The most common symptom is headache, but loss of appetite, nausea and sleep disturbances are also common complaints… since you may already be dealing with a headache try and stay aware of any changes to the headache.
and I forgot to sign my name again… azurelle
Yes, I will drink a lot of water (in general, even) for sure. Sometimes I forgot to drink water even when I am at home. That’s a bad thing already. I am giving up traveling to the mountain now. Start looking into traveling in the sea. Unless there are storms, the air pressure should be a lot better than the mountains. Thanks for the reminders.
If your Brother lives in Palo Alto, I want to give you a heads up to TAAF (the Aneurysm and AVM Foundation) Walk coming up on May 6th in Crissy Fields in San Francisco. http://www.taafonline.org The top NeuroSurgeons, Neurologists, Neuro-Nurses and Researchers (UCSF) will be present at the Walk. This year, the chief NeuroSurgeon from Stanford and Researcher from Cleveland Clinic will be present. You will also meet Survivors (ruptured and unruptured). You will be surprised how many people have common issues from short term memory issues to migraines. It is also an inspirational event meeting. Survivors who could not walk but through determination, they are independent again. TAAF is a sister organization to BAfound. If you see the medical advisory board (About Us Tab) , they are the best medical minds regarding this vascular disease that affected us. They have booths with demos and display of latest technology.
BTW, I am not a medical person. The treatment for ear pain at high altitude traveling works for me. But, I read your posts that there was some leakage coming from ear. You may want consult with ENT as you do not want ear damage during high altitude traveling and ear plug may not be solution.
Let me private message you regarding my physician. He is not in the video but my case was reviewed in the same way with several physicians like the video. These physicians really make a difference and I am grateful finding an amazing Neurologist.
I am interested to go to the walk if I don’t end up going to Boston. If I go, I’ll bring my dogs! Yeh! I have a very dumb question to ask… Once a surgeon ‘operates’ on us, we will be under neurologist, ENT, or pain doctors’ care unless the wounds are infected after the surgery, right? My friend asks me about this question and I have no good answer to her.
It looks like the surgeon is responsible to cut/sew us (of course, to keep us alive during the process), then his job is done. Whatever happens afterwards will be handled by other specialists since the surgery is considered a success if there is no immediate complication. I maybe wrong, but this is what I comprehend so far.
Some doctors (PCPs, neurologists) are afraid of handling patients after a surgery. 90% of their responses are like “go ask your surgeon”, and 10% are “it’ll be better”.
Your advice is invaluable. Anything that works for you might also work for me. Don’t worry about your ‘medical title’ because Chinese’s saying of “After being sick for so long, you become a good doctor”. 久病成良醫
I hope I translate it correctly. You get the picture here. Doctors will never have the real experience until they go through the same thing/illness/surgery themselves. They are good in collecting data and sort things out so they can help us to avoid a lot of mistakes.
I will message you. Thank you again!!!