For any of you who have had forehead swelling and headaches- could you take a look at the attached and see if it looks anything like what you are experiencing? I am dealing with some strange swelling over my right eye when I have headaches – looks like an inverted tornado - we call them my horns. I am wondering if it is similar to what any of you may be experiencing? If so, did you get / find any solutions?
I am a little over a year past my ruptured brain aneurism - had a coiling to fix - still suffering chronic daily headaches - about to be sent to a headache specialist.
Hey Joanie,
I did have some swelling from a CSF leak post craniotomy and if I exerted myself I could hear the fluid squirting out, a noise similar to drinking milk through a straw. It was explained to me that due to surgery the seal had been broken, but that as the craniotomy sealed back up the leak would also seal and eventually, it did. But, a year on since surgery, all of that healing should have occurred.
Now you state “…strange swelling over my right eye when I have headaches…” Does the swelling only occur when you have headaches? Is the swelling soft and squishy or solid and hard? Do you find it alters when you are stressed?. The surgery itself has altered the flow of blood. When we get stressed our blood pressure tends to increase, this can affect our headaches/symptoms. Stress may also increase the blood flow to that particular area.
I too have seen a ‘Headache specialist’ and been put through a whole plethora of tests, treatments and alternative options. ‘Headaches’ are notorious for being difficult to pinpoint a cause and just as notorious to find a treatment for. And that’s for people who haven’t had neurosurgery. Adding neurosurgery to the mix can make the whole identification process of cause vs effect near on impossible. As one medico rather bluntly said to me “Headaches? Well, you’ve had brain surgery… What did you expect?..” What I didn’t expect was THIS, daily, nauseating, mind numbing pain. Some people are of the thinking that a headache is a headache is a headache, they’re all the same. Ohh, no they are not. I kept a pain diary to try to identify any pattern over time. I recorded time, type, location, pain intensity, diet, medication, activity, sleep patterns, medications, weather etc Anything that maybe considered a ‘Contributing factor’ I recorded it all.
My recommendation: Follow through with your appointments. Follow through with their suggested treatment plans. You never know, one of their suggestions/treatment options could well be your ‘key’. But I strongly recommend you document it all. Who you saw. When you saw them. Their specialization. The tests/scans/examinations you have and their relevant reports. Document it all. Often we can get sent to differing Drs with differing specializations. They can often send us for the same tests etc repeatedly. By having it all documented it can cut back on this repetition and can also assist in showing you are being proactive in your own care.
Good job of relocating your post! After a year from rupture, I already had my second coiling fix. My neck used to swell, but not my forehead. Yikes, I bet it is concerning! Have you reached out to your Neurosurgeon? The first thing I do with the oddities I have had is reach out to mine, especially the first couple of years. Then they trained me to reach out to my Neurologist lol.
One of the things they will ask is if it hurts where the swelling is and what type of pain - sharp, dull, piercing, etc. my neck felt more like an alignment tool for Dad’s tractor was being shoved in than an ice pick everyone wanted to call it. I would also get this big lump above my left ear that hurt to press on it. Then they will ask how long you’ve had it. For the most part it seems from members here, the surgeons will often say it’s not anything they’ve done, mine wasn’t that way. Hence the four procedures I have under my belt. My Neurosurgeon would have me put either a cool cloth or an ice pack on mine. I have a lovely one that was provided for my foot surgery years before my rupture. It’s not overly thick and easy to form around a place that’s not flat.
Did you have your follow up MRI/A’s and angiogram? I believe with each type of headache and it’s location tells the doctors something about the cause. The nitwit NP my Neurosurgeon used to have would always say stress, no matter where it was. Then my Neurosurgeon would talk to me about it and next thing I knew I was having another angiogram. The NP she has now is a much better fit and far more interested than her predecessor, thank goodness.
Another thing my Neurosurgeon stresses for headaches is to stay hydrated at all times and to eat protein. My rules for headaches was hydrate, eat protein, rest, hydrate some more, eat some more protein, rest and hydrate. She even once shared she tells her husband when he has a headache “What have you had to eat and drink today?” So it must be pretty important. Even this far out, we can tell when I haven’t had enough of both as my neurological symptoms all increase.
My first Neurologist was a wonderful man, and he cautioned about taking too much otc’s for headaches as they can cause a secondary headache. I was limited to no more than two or three days a week. His belief was Americans don’t get enough magnesium in there diet so he put me on it. It was at a level that I had to ask the pharmacist for it and provide the name of the Doctor. My body couldn’t tolerate it and I had to keep reducing the amount until there wasn’t anything more to reduce to.
You may want to reach out through your patient portal and explain the swelling to your neurosurgeon whilst waiting for your appointment with the headache specialist which I presume is a Neurologist…it never hurts to ask or let the surgeon know what’s going on.
@ModSupport Thank you for the detailed reply. I am keeping a diary - sometimes that feels like a part-time job.
I was lucky enough to have my rupture repaired via coiling through a vein in my arm, so didn’t have to have a craniotomy – i feel even more fortunate on that front after reading here on the forum.
@Moltroub - thanks very much for the detailed reply.
My neurosurgeon, who did an awesome job with my surgery, hasn’t been able to do anything to touch my headaches. Just last week I decided to go the headache specialist route as my second round of Botox had no effect.
Why did they say that your neck was swelling?
I have had one follow up angiogram - 6 months from rupture and all looked good. I am really hoping i can get into a specialist soon to have someone ask relevant questions and actually seem to have some knowledge on this issue.
The whole rebound headache issue just blows my mind – I could somewhat control these things with some OTC migraine meds, but taking them every day is not what I want to do.
So happy I found this group to know I am not completely going crazy.
Your definitely not going crazy! I don’t remember exactly why they said it was swelling. Initially it was due to the CSF and blood mixing together like a cocktail. There was my constant growing intolerance to the contrast dye. But I have five of the seven cervical vertebrae that was dislocated when I was 15. When I worked and had little sleep, the right side would swell up enough at various times to go to the PCP. The one before the one I have now would always discount it. He discounted a lot of things until I ruptured. My Neurosurgeon sent me back to PT for it a couple of times since I don’t want surgery, I no longer can do any of their stretches.
The only thing I do for headaches now is hydrate, protein, rest, repeat and a cold pack on my neck. I might take ibuprofen but never more than a day or two. We keep our home pretty dark except when we have friends over. If the tv or radio is too loud, I stay outside.
Merl often shares that there is no one treatment that works for everyone. I think he’s had more tries at it than any other member! Have you tried an ice pack yet? Are you being seen by someone with Emory? It’s the only medical group I know in Georgia😂. We have another wonderful member down in GA, maybe she could give you some names to try. Yes GA is a large area, but one never knows. One of my favorite neurologists, Dr. Krzysztof Romanowski, moved to Virginia Beach! Your surgeon or PCP may be able to get you in to a specialist faster, so make sure you get their help.
Yes, I couldn’t agree more.
I was told ‘Wait an watch’ was the best approach by one neurologist. My view: “I have a timebomb in my head and YOU want me to wait???” I wasn’t playing that game and spoke to my pcp about this. “Ohh, I have a colleague whose a neurosurgeon, I’ll put you in contact with him…” Had I not spoken to the pcp I think I’d probably still be waiting. All of these pcp’s have their own network of consultants/specialists they prefer to use, getting into that ‘medical network’ can help.
Moltroub is correct in that I have exhausted damn near every treatment option available to me. If any Dr/medico/practitioner ever tells you they have all of the answers… …it’s a lie. Nobody has ‘all of the answers’. NOBODY. What can work wonders for one person maybe of very little use to another. I was promised Botox was going to be my magical cure. ‘It’s worked wonders for others…’ and that maybe so but for me, it did not. The neurologists response 'Well, it worked for others… …It must just be YOU" Like I choose to be in this position. Who would choose this?? Not I, that’s for sure.
I think the best advice is to go into it without any great expectations. If you get an answer, that’s a bonus. But going in with the expectation of obtaining an answer can be really soul destroying when that answer is not forthcoming or it gets put back on you.
Best of luck with it all
Merl from the Modsupport Team
That’s it in a nutshell I do believe. We often go to a doctor thinking they know everything. Although their knowledge is vast, it doesn’t always cover what we need as individuals. We need to learn to articulate our issues well, sometimes that means showing them a diary of the issues that address the five w’s and h.
When we find one that’s willing to be open minded and continue to try its fantastic! I am very fortunate to have the PCP and the specialists that I do. It takes a good bit of time for them to figure some things out and to learn me as an individual. They all will tell me they don’t know something, but they all are willing to keep at it. I’ve also experienced where the specialists begin to act like a dysfunctional family if you will and we become the go between. I once told three in my retinue I was going to send them all to lunch together so they could discuss my case. They all laughed and said that would be a grand idea! I think they actually did talk to each other and my pocketbook wasn’t lighter because of it. LOL
I am still experiencing swollen in my right eyes area every day, it takes time to heal If it is a bad day, it looks like someone punched me
It has been more than 4 years now
You might notice
Close to the aneurysm location or affect from blood flow (from surgery)
For your cases, I think you need the doc to find out
The moderator and modsupport are right
