My daughter, Sandra is 2 weeks post-op. Generally, she is doing pretty good, but each time we are trying to walk around the hallway around the apartment bldg. she gets very dizzy, white as a sheet. Scary. Than, she still has very bad headaches mostly around the surgical area. Is any of these sounds normal to you guys? I've called the dr's office, but as surgeons usually do, they are not so good calling back. He is a brilliant surgeon, but the office is not very good calling back about "trivial" problems. So, I am asking if this dizziness sounds normal or should I be alarmed. And the headaches after 2 weeks are normal still? She still have her staples in. They are coming out on the 6 th. Thanks
Hi Maria, my son also had a craniotomy on Dec 8, 2011. He had headaches and dizziness for about 2-3 weeks after the surgery. His Dr. told us that the headaches and dizziness are normal because the surgery was very significant and there was a lot of swelling. His staples came out 12 days after his surgery. Once all the swelling went down his headaches were not as often and not as bad. Today he is feeling much better and almost back to his old self. I hope this helps.
Thanks, Sandra, it sure does help, because I am in the dark here not knowing how long this should last.
Maria,
If your daughter's NS is not calling you back, does she have a neurologist for follow-ups &/or to answer your concerns???
If these are new symptoms, don't hesitate to take her to the E.R.
Hope she feels better soon!
yes, I've just called the neurologist. We were told to call for a follow up appointment after the surgery. So I've called today, the appointment person said his next available is in August . So I could not help myself and burst out laughing. I said "you've got to be joking, post-op visit and you want to give me August?!? Her seizure meds have to be discussed etc. So I've left a message for the nurse, lets see if this one calls me back. Mind you these two doctors are the department heads of a teaching hospital, so it is very difficult to get appointment with them or speak with them etc. other than the actual time on your visit. But they are brilliant. So this is why I rely on your experiences. :)
I HOPE you'll take your daughter to the E.R. where they can do an exam & possible CT or MRI if need be. Better to be safe!
"Dept. Heads" are very busy, but they have Residents & staff to assist them.
Hope you'll get answers soon either way.
Thanks Patti, I will call them again, you are right they DO have residents.
I wouldn't be too alarmed at the dizziness/headaches at two weeks, but best to ask the Drs. If you think about the trainwreck that your daughter went through in her head, those symptoms don't sound too alarming. It takes your brain time to sort things out after the trauma.
Drs, especially the best surgeons, have a different perspective: Success to you is being fixed to just how you were BEFORE while success to them is you are ALIVE and whatever deficits you incur still don't change the fact that you are alive................
Controlling the stimulation (light, noise, stress, etc) might help the headaches. Whenever standing, do it slowly, and don't make sudden movements might help with being dizzy.
My wife's staples itched and irritated her, but she felt better after they were removed.
Best wishes,
Ron, KS
Thanks, Ron, I agree, its probably ok, part of the whole process I guess, I was just wondering if you all went trough the same thing, because when you don't know it is so hard to tell what is ok and what is not. She is fine most of the time, but she still need the pain meds almost every 5-6 hrs. And the dizziness scared me a lot, that happens with the walking. She likes to watch T.V a lot you think maybe that causes more headaches at this point? too much stimuli right now?
No clue on the TV, but that's an easy one to check; just don't have the TV on for two days and see if she's better........ Could do the same with other stimuli, such as reading or lighting.
Ron, KS
Maria, in reading your story it doesn't appear as though your daughter had a bleed, correct? I did have a bleed but I will tell you that for me the headaches lasted several weeks and were often quite severe. The dizziness is something I still deal with, but again I had a bleed so it may not be the case for your daughter. How frustrated you must be with no response from the doctors. Neurosurgeons pronounce you "cured" once the remove the AVM. I am surprised though that the neurologist isn't offering anything before August. I would suggest trying a different neurologis, keep trying the neurosurgeon, or if you're really concerned take her to the ER like Patti suggested. Good luck!
Hi Trish, no she did not have a bleed. And before they’ve let her go from the hospital they’ve done a cat scan and angio and it showed no bleed. So its probably just post/op stuff. I just wanted to know how long it usually lasts also the same for the dizziness . I know I am do happy she is cured and alive but now we have to get use to a new way of life for her . I am sure things will get better with time. It’s only been 2 weeks.
Maria...Thank goodness for this Network so you can know what all of us when through after our surgerys.
Sandra is only 2 weeks from her surgery and I remember that during that period, I was dizzy and to be honest, I still have headaches, but mine aren't from the surgery now, they are from the beads installed for my Proton Beam Radiation. But from what others say on the Network, it takes some time after you have staples for the headaches to improve. As you said, our Neurosurgs are brillian and very busy saving the next patient.... However, write a list of what you need to discuss when you see them on the 6th! It is the best time to get their attention! Stay Strong and Positive.
Oh trust me Louisa I have my list going already. It’s the only way to get answers from him at the time of the visit. Otherwise you are on your own . Yea I guess this is going to be a long long road this recovery is not your typical 3-4 weeks etc recovery time and youre done kinda thing . So we will deal with it as we go along
Hi maria... sorry to hear that sandy's been experiencing bad headaches still and often get dizzy.. it may sound like perhaps sandy needs to take it easy a lil bit especially if she does get pale along with the dizziness after walking around a bit.. not that i am saying walking around is not good for her. it's good that she's able to walk around as this is one way for her to gain her strength back... do ensure rest periods in between your walking sessions (which am sure u are doing).. even so, your concerns warrants a call to the doctor.. yes, the clinic is not so good about calling back promptly (doesn't define the doctor - yes he is brilliant).. i've had that experience too way back in september for my first hospitalization..they do have high volume of calls to return at times. here's what i did: i called again the next day and really 'pushed' it , told the receptionist that i never got a call back - then Andi (Batjer's Nurse practitioner- is she the one assigned to your case too?) called back - & she was real good about addressing my concerns then. When she does call u back, she'll spend a good time addressing your concerns - so have a list ready. headaches that don't go away despite taking pain meds around the clock? hmmm.. hope it's not a different kind of headache that she's experienced yet... if it's a 'new' kind of pain - u can always take her to the E.R.. i pray that won't be the case..anyhow, u can tell Andi all about your other concerns as well on the 6th when u go for the staple removal..also, perhaps when the staples come out - Sandra might feel a lot better too. I know I did... on the other hand, Sandra might be going thru the normal recovery process (headaches) as well as possible cause of dizziness coming from the anti seizure meds..I know the 'recovery period' can be a bit tough.. I've had not so good days.. but now i feel a lot better but still not 100% - but happy with my progress.. so am still taking it easy .. i hope what i've shared helps too.. .i'll be praying for sandra..talk to you soon. take care!
Leona, that is exactly how Sandy was feeling. Just as you've described. Then take the meds. and go to sleep. Then wake up and feel better. Then go for a walk and get dizzy and so fort. So this is why I was confused. But now I am beginning to see that this is a normal process of recovery. Thanks for sharing. :)
Hi Val, yes I have Andi assigned to us as well. I do know they are very busy, but it is so hard when you need answers and they don't come :( So, I did what you did, I pushed it too, I've called now 3 times, so finally, I've just got a callback this morning. They've told me I should have Sandy sleeping in a semi reclining position, where her head is positioned pretty high. (she was sleeping kinda flat) this should help with her headache considerably, something to do with the circulation and the blood pressure. Plus as you've said the seizure meds also giving her headaches too, and the dizziness comes from the impaired balance at this moment, which will correct itself in time. I wish, she did not have to be on seizure meds. they are awful. But she is coming along nicely otherwise. I agree I think the staples also hurting her a lot, they are coming out this friday. Lets hope that will help. Thanks for your prayers. :)
Hi Maria - I didn't have these symptoms, but that doesn't mean anything. Everyone's different.
Hi Maria. Being on anti-seizure drugs is very important. You do not want your daughter suffering later on in life. An ounce of prevention…
I am glad you got some answers. I hope your daughter will get some relief now!
Hi, Barbara, I know she needs the seizure meds. for prevention, but the side effects are so bad with almost all of them, I've heard. She is on Keppra, it gives her headaches, takes her energy away, makes her sad sometimes, I think all of these types of meds do that. I know the alternative is worse. But, I wish she did not have to worry about seizures anymore. But I guess she may have to, for life.