So, I had a PED placed March 1st 2012 and simultaneously was coiled (usually PEDs are a standalone device but my anny was too large and in a high volume artery). I had terrible headaches for nine months after - pulsing throbbing stabbing pains at the anny site that were exacerbated by any sort of movement. Yes, they gradually became less in frequency and intensity, but I still got them every three or four days if not more. At both my follow up angios I told the surgeon about them, and he kept saying it was still healing. Except my angios both times showed I had a leak. I asked if that explained the headaches but he wouldn’t commit to that line of thinking. I had another two PEDs telescoped together with the six already in there on Dec. 17th, and for 24 glorious days in a row I had no headaches! I thought I was cured, finally! Then they came back, just like before. I had one, two days later another, two days later yet another that lasted through the next day. I called my neurosurgeon, and the next day his office called back. After talking to whomever there, the nurse called back and said they decided they didn’t think there was a problem with my anny and that I should get a referral from my PCP to see a neurologist for headache management. Oh, and to try ibuprofen as well as Tylenol. Seriously? Am I the only one that sees the recurring headaches in this situation as a common sense conclusion that they are directly related to my anny??? Ugh! Frustrated beyond belief right now with the medical field. Just had to let that out with the only people that I know that’ll understand.
I know we have had this discussion before. But I to am suffering headaches. I think they have gotten better. But then again I’m wondering if I’m just getting use to living with the pain. I’ve started working out again which I did before a lot of before this all happened. But the headaches to seems worse after the workout:( I just want to feel like myself again but I’m starting to wonder if that’s ever going to happen. It’s been nine months to the day I had my PED surgery. The Dr.s tell me the same thing. I don’t think the headaches are from your Annie or surgery… Are u kidding me. I never had a headaches like this ever in my life. I pray we all have healing from this…
Well, it’s nice to hear I’m not alone, but terrible to hear others suffering along with me. Thanks for chiming in - misery loves company I guess. I’ll let you know if I decide to try a neurologist and what the findings might be. I’m going to have to get up some gumption first though…and Tansy, I agree with your comment about maybe just learning to live with the pain. I wonder that too. I think it is possible that my headaches come on after a busy day, but I haven’t journaled to find out. I’ve only marked the calendar to track frequency. Perhaps if they keep up, more in-depth personal research is needed…
hi Sarah-so sorry to hear this from you and the others but glad your venting here-i will keep you in thoughts & prayers
Thank you Ron
Sarah vent away...I too have had the same feelings about the medical care...I had the big headache...then coiled (prior to coiling had a headache once a year) ... since coiling ... I have terrible migraines about twice a month...and see a Neurologist ...however, at my 18 month angio, I was told my coils compacted and I have a bit of a leak...hmm? Could there be a link? No one will commit...
I think it is good you see a Neurologist and get some help for the headaches...when do you go for your next angiogram checkup? gotcha in my Thoughts Colleen
Thank you Colleen for your support. My neurosurgeon said he didn’t want me to come back for six months, and mentioned he’d like me off the aspirin and Plavix before then. I am reluctant to agree to that - I’d rather have a clean angio first!
Ok, is everyone that still has headaches on or off the aspirin and Plavix? I’m still on both…
I’m still on plavix and aspirin. For another three months then just aspirin until my next angio in oct. I saw the neurologist today. He wants to do a mra to look and my head again because of the headaches. Just to make sure I’ll is working correctly. I’m nervous. Then he also wanted to put me on a new migrain med. I’ll keep you all posted…
No I was off the plavix along time ago...however, I am still on the 325mg of aspirin daily...told I will be on this for the rest of my life...~
Hello Sarah, hoping your headaches are gone. Sometimes we can be treated like a number instead of a human being. I guess some Docs are in routine mode. As for the head aches, i read alot here on the site, that people that have coiling get head aches, it could be inflimation, who knows. The Docs should give out more info to their patient. I think talking more to a patient would ease alot of anxiety. All the best Sarah.
Is there a reason the aneurysm wasn't clipped and is it a possibility still to have it clipped? Perhaps a 2nd opinion is necessary ?? I wound up in a situation after my coils started compacting with a doctor who told me to "Come back for followup in 3 weeks"--I personally didn't feel that was a good option for me so I headed straight to another hospital with my films in hand, was immeiaitely admitted and a clipping was performed within a day or two , and to this day, no more headaches or problems. Please consider getting another opinion. My best to you,
Well, I've been dealing with all this since an SAH on May 12th. I've had headaches constantly. At the six month followup angio, the aneurysm popped up again and it was subsequently coiled the following week. The good news is the headaches went away for 2 months. Now they are back again. So, I too get frightened. I went to a neurologist regarding the headaches and she put me on Indiril 2xday to lower the blood pressure and also scheduled a CAT w/contrast. The CT was yesterday. OMG....even that was a nightmare. The IV infiltrated. Geesh, I started crying and just wanted to go home, which is what I did. I didn't stay for a third attempt at putting in an IV. One week after the second coiling I developed a blood clot in the femoral artery (big surprise) and am now on Coumadin. I feel like this will never stop. My energy is sapped and the joy has dissipated. Talk about venting! Sorry, everyone. it could be worse, I know.
I am so sorry for all you have endured! I don’t blame you for leaving after the IV debacle. I’d be unhappy too with all your troubles. No harm in venting, please keep visiting us and let it out. Ok? Hang in there, we are all in this together!
It was not clipped because its in the basilar artery, the only one I have running down the back of my head/neck. They did a balloon occlusion test to see if blocking that artery (as clipping would do) was an option but I experienced numbness during the test. Most PED surgeries don’t require coiling but mine did due to the high volume of blood flow in such an integral artery. I too feel the coils are my main problem, but I can’t change that now. The dual device surgery was my only choice besides an ICE/ECE (intra-cranial extra-cranial) bypass, which had much higher incidence of injury or death and was a more true surgery with skull cutting etc. Thank you for your concerns though! And I did have several opinions, most of which were “I can’t help you”, and the last two were the docs who did surgery one and surgery two. Big aneurysm, poor location, difficult to treat.
Thank you Nikki - I feel like another notch in the docs’ PED placement belt. Device placed successfully, no need for further concern. Bah. I think they forget that “success” has many definitions, much like beauty, and in the eyes of this beholder, I need a little more smoothing out! Lol
Ok, so I just refilled my Plavix (well, the generic version - ins won’t pay for the brand). Reading the list of side effects, and under the heading of “severe - notify your physician right away if you experience these” is heavy menstrual bleeding (yep, complained about that to doc…and made a discussion here on it too), and headaches! Let me repeat that, headaches! Seriously!? Ugh! Ok, vent over for the moment.
I'm still battling headaches, though I had more than one thing going on. My eyes seem to be the culprit lately, and the weather -- I honesty think the PED works as a barometric device -- I should work for the Weather Channel at this point because my head pressure pain is far more predictable than their forecasts.
Interestingly enough, after my 3 month angio follow-up appointment, I told my surgeon that I was having less headaches and he said that most likely it's due to the occulation. He mentioned the swelling/inflamation being a problem following the procedure. On the site somewhere I noticed some patients are given steriods for this reason, though not sure if its for the PED -- neither my surgeon or my neurologist would approve them since they do thicken your blood however. Since your surgeon mentioned ibprofin, they may think the same thing about inflamation. Not sure if your aneurysms are totally occulated yet.
Also, Plavix was the bane of my existence. I was only on it for three months but it wrecked havoc on my body making me very very dizzy going from laying down to sitting up or from sitting up to standing (I thought it was the surgery) with awful throbbing, pulsating headaches, and acid indigestion that was just unreal. When I was able to drop it after occulation it helped so much! Hopkins also had told me to stay on Zantac to protect my stomach while on Plavix. I stayed on it about a month afterward because I figured I was still on aspirin but found that going off of it really helped me significantly. I'm still on aspirin which my surgeon wants me on at least until the year angio in August. Check with your pharmacy on Plavix -- there are a couple of companies that make it -- someone on the board mentioned that when they went from namebrand to generic that it really affected them -- something to do with the ingredients used in the generic. One generic really bothered me, and I had Walgreen's special order the other one which was much better, though I still had side effects.
I do see a neurologist but it took me a bit of time to find one that I like and trust and that isn't overcrowded with too many patients to care about me. She's very into finding medication that works for my head, has decreased the amount of nortriptyline that I take for chronic headache pain and has put me on zonegran to prevent headaches from happening. I've been through quite a few medications trying to find what works best for me (neurontin, topamax). The overall goal is to get me off of all medications by the time a year has passed since my surgery. I also see a chiropractor which helps a lot. She also ran every stroke genetic marker test that she could which when all came back negative really helped alleviate my anxiety.
My husband calls my surgeon a "scalpel-jockey" since they really do only seem concerned with the surgery itself. Thing is, that's their specialty, to fix you so that you don't die. And my "scalpel-jockey" totally rocks! And as Denise can attest, he's pretty hot too! A neurologist's specialty is to help you deal with the head pain from the brain injury while your body tries to heal itself. Hang in there, see a neurologist, allow yourself time to heal -- you're only just over a month since your last surgery. I totally think it all has something to do with nerves, though I'm always assured there are no nerve endings in the brain which I understand, but still think that when we put something in that didn't used to be there, our nerves go nuts. I also think all of us would be just so much better off if we could have a good stiff drink! lol
Hugs to ya--
Tara, how long ago did you have your PED placed? And how big was your Annie?
July 31st, 5mm, intersection of the right ophthalmic artery and carotid.