My husband has his brain aneurysm surgery over two years ago, he isnt the same person, has had alot of headaches, been to the er 4-5 times cause of them. Right after his surgery there were a small area of swelling in the temple area. Went to the doctor for the normal checkup and asked him if that was normal and he said yes, it will go away. Its been over 2 years and the swelling is still there, hasnt gone away and is bigger than it was after the surgery. Its now goin into the eye area, which makes us wonder what the problem is. My husband went to a neuro doctor and he couldnt tell us what the swelling was from either. So next month we are headed to Cleveland Clinic to see what this swelling is from and why its still there since the doctor said it would go away. Does anyone else have this problem from a cranial surgery??
That sounds distressing, and kind of crazy. I'm only 3 1/2 months past surgery, and I still feel like I have variable fluid/swelling in the incision area, so I am following your post for responses. But: two years seems excessively long for that to go on. I think you should press for an imaging test (angiogram/CT/MRI...I'm not sure which would be best) to see what's going on under the skin.
The fact that his eye area (and therefore vision) is involved would also make consulting a neuro-opthalmologist appropriate. But, if you're going to Cleveland Clinic, they should be on top of things enough to hook you up with whatever expert can figure it out. It may be a very simple thing to fix. My understanding is that the swelling rates and fluid circulation inside the skull and outside the skull are usually separate and different, and the outside swells more than the inside. So it could be his brain is fine, but there's a circulatory issue on the scalp/temple that is giving him grief.
One of my greatest regrets about all of this aneurysm business is that I was so disabled following surgery, and I am not the same as I was, personality and outlook-wise; I feel for the family members of people afflicted. Your husband may be the one with the health problem, but you didn't ask for this, either, to be sure! I will be thinking of you and hoping that you find an answer, soon.
Thanks for the reply!! My husband was looking though his pictures after his surgery and the swelling in that area was there then. He has a brother and a sister that had the same doctor that did their surgeries too and they dont have this problem. The doctor saying it will go away and it hasnt in this long is questionable. The area use to be kinda squishy feeling, but now its kinda hard and squishy. His safety glasses cut into it at work also. My husband has been in the ER 4-5 dif times with headaches and what not and this doctor has come in to look at his scans and mri's and has never come in the room to even talk to my husband about whats going on. My husband also has unusual tongue numbness, his taste is different with foods all the time, he even still gets pains on the opposite side of his head like he use to before he had his surgery. There are alot of things we will make sure to get answered when we venture to Cleveland Clinic next month. This has been going on way too long with nothing to answer why.........so I will def be posting the outcome when we get some answers.
TOMORROW is the day!!! Finally!! Cleveland Clinic bound to a neuro doc for the swelling and everything else that is going on with my husband!!! Hoping to find some answers to what is going on. Soon as we know I will post the news.
Didnt get any answers on the swelling at the temple area, seems no one wants to tell us why this is. They keep saying that it may be blood vessels and what not, fluid in the tissues, but my husband is very upset with no answers on what it is. They say its an adema but my husband says he is tired of looking like a freak when it swells. As for his headaches they said he is getting cluster headaches. The neuro doc gave him 2 prescriptions, one to help ward off the headaches, a blood pressure pill, which my husbands blood pressure is always great, he has never been on a blood pressure pill, and a nasal spray to do when a headache first starts. He also has the choice of oxygen too. The weather change is what bothers my husbands head the most with getting headaches, he mainly has a slight headache most of the time. So his decision was to not do any of the meds with the side effects they have..........all heart attack and stroke side effects, except the oxygen which I will try to talk him into doing. But as for the swelling........no answers still. When we was healing from his surgery there were a couple inward stitches that pushed out where he was cut and thinks something came lose inside. This is so frustrating!!
Lori,
I just read your post, and it sounds so very familiar. I also had edema for almost 3 years after my coiling and stent. I had a basilar tip annie, so my edema was in the back of my head. Sometimes now when I go back for an MRI, theres some slight edema and theres no explaination. I'm sorry to say that. Hopefully, your husbands will improve and never come back. I have recently decided to go to a different Nuerologist for a second opinion, (although mine is supposed to be the "best in the area"), simply because I feel that, I'm having issues that are not being addressed, and I the answer I get is "I don't know why that would do that", lol! So keep pushing, your husband is not alone. I think the reality is,there just isn't enough knowledge out there about survivers! Thank God we are here to teach them....
I'll be praying for you and everyone!
SO he is not alone....................he had a brother and a sister that had aneurysm surgery the same year..they dont have any problems. Its just odd. He still has it, even went to Cleveland Clinic to a neuro there..no answers. Just dont get it, it bothers him cause he wears a hard hat at work and safety glasses and it cuts into that area. The swelling is starting to go into the eye area too. Just would really like to know why it swells, he was told it may be fluid, ok where is that coming from? We dont know what to do anymore. He has been to 3 dif neuro docs, now what???? The doc that gave him the surgery told him it would go away........its been since 2010 its still there. I am thinking to go back to the doc that gave him the surgery and say...ok its still there......give me answers!!
I have the same issue and nobody can explain anything, other than saying it’s fluid 3 years later.
Lori, did you all go back to the Neurosurgeon? Any news?
Wow, this sounds like a very frustrating situation. I am only 3 weeks out from Pipeline stent surgery, and I am having swelling in my leg, same side as angiogram. There are no blood clots, which is good news, but there is no explanation why I have swelling from the thigh down, and pain in my thigh. I hope someone will be able to provide you and your husband with answers, and that they can do something to stop this.
We went, the doctor at cleveland clinic had no advice, or anything he could tell us what it is or what it is coming from. He said maybe fluid from vessels leaking. I just dont get it. Its so frustrating.
Moltroub said:
Lori, did you all go back to the Neurosurgeon? Any news?
Ya my husband has been to 3 doctors now, no explanation of it or nothing. His is 4 years and 5 months ago. Does yours ever hurt Donna??? He can sometimes feel it filling up.
Donna said:
I have the same issue and nobody can explain anything, other than saying it's fluid 3 years later.
Hi! I know this is a super old thread but just wondered if it resolved? Hoping so for you and your husband! I had my aneurysm clipped 8 months ago and stull have some temple swelling. A physical therapist told me that it might be that scar tissue built up before the fluid could drain and that lymphatic drainage massage might help. I’ve been doing it myself and it seems to have helped a little. Thought this might help you guys and I guess I’m hoping mine will go away, too!