I'm hoping someone here has some insight. I have had life long Migraines and was diagnosed with an 8mm Aneurysm on my Left Central Cerebral Artery in Feb of 2013. I'm 42 years old and elected to wait to have it treated until Dec 17th 2013 when I had a (actually 2) pipeline stent placed. I had a clot develop in the stent during the procedure and was given clot busting drugs at the time. The clot dissolved but due to the aspirin, Plavix and Clot busters I bled into my abdomen for 12 hours from the angiogram site in my groin. It was a rough recovery. I am back to work now, but my hair is falling out in clumps and I have a near constant headache which "twinges" where the stent is. I could point a finger at the site...it's the stent location and sometimes these pulsing twinges stagger me. My Dr. says these headaches are normal, but he also said I'd be able to go back to work 1 week after the procedure and honestly, unless I sleep about 15 hours a day I can't function.
These pulsing headaches are not Migraines, they do go away, or are dulled with Tramadol but when it wears off it's still there...pulsing away. They don't get worse or more frequent but they don't get better either.
Has anyone else experienced these pulsing headaches after coiling or stenting? I'm only 3 weeks post procedure so am I just expecting too much?
Thanks - Linda
You are doing remarkably well to be working 3 weeks after the stent and such a complicated recovery. I was off work for 7 weeks after the op and even then I struggled and felt it had been too soon because of headaches and tiredness. I think the surgeons make us feel we should be recovered and back to normal with the unrealistic time scales they give us. I am 15 months post stent procedure for a 26mm aneurysm of the left carotid artery. I am today in bed with a horrendous headache that isn't responding to any medications (I have just tried an ice pack which has given me a bit of relief). I have migraines/headaches and head pains (these also seem to be where the stent is placed) a lot of the time and I am still prone to tiredness, dizziness, poor memory and poor word recall.
You will see from the site that a lot of other people are in the same situation. Add to all of this the anxiety of not knowing if the pains you get are "normal" or a sign that something is wrong and its understandable that you are worried.
Don't be afraid to seek advice from your doctors. At your stage I had to have a further course of steroids as the pains were so bad but all was ok on scan it was inflammation from the procedure. You need to rest as much as you can and don't feel that you should be doing more- you have done so well but it is early days.
Hope you feel better soon. Love Jennifer
I had the terrible headaches after coiling...( truthfully I never experienced many headaches in a lifetime ) until the coiling...they were for 3 months straight...but like you my recovery wasn't the best...Doctor told me they could last up to 6 months...well after 3 months they started coming once a week...then went to twice a month...that is where I am at 3 years later... I can't even imagine you working with all of this...and feel for you...I am blessed to be a housewife...
This is a long journey and it does take time...I don't think I felt my "new normal" until after about 1 year...
If you want more information on pipeline...we have a group here strictly for PED ...
just click below and look around and ask to join if you wish...~ Gotcha in my Thoughts ~ Colleen
Thank you so much for the reply - I really feel like it's too soon to return to work also but my Dr only gave me 7 days excused from my job originally, and then another week because of the internal bleeding. He seems to think the 7 days was generous. You are so right! I'm relieved to know these headaches are normal and not some sign of impending doom. As they aren't getting worse and I'm neurologically fine I'm just going to get as much rest as I can and do the best I can at work. They weaned me off the steroids 5 days after the procedure and I really think that was too soon as well. I did see my family Dr today and they did some bloodwork, but really it's obvious to me that my hair is falling out due to stress...I don't think it's a coincidence that it started 2 days after I returned to work.
I appreciate that you took the time to reply - thank you so much!
I appreciate your taking the time to answer me. You've given me some perspective and it does help to know that others have had the same experience.
I will check out the group! Thanks so much!
I want back to teaching in a classroom 2 months after my procedure and had vicious migraines that seemed to build up all day long. I too felt pain at the site, but my neurosurgeon assured me there could be no pain from the actual stent since there are no nerves in the brain. I saw a neurologist who said that I was having cluster headaches due to the whole stress of everything and that my brain was probably dealing with the stent as a brain injury. Thus my skull was twinging. Nortriptyline and topomax saved my career for the rest of the school year. Nortriptyline blocked the pain (and helped with depression and omg quitting smoking!!!) and topomax worked to reduce the number of cluster headaches. Over summer I weaned down to just nortriptyline and at the recommendation of my neurologist, splayed the caffeine demon. Three days of killer migraines and haven’t clustered since October 24th (knock on wood). So, don’t be afraid to book a neurologist or at least request something from your primary. Neurosurgeons are great at what they do, but tend not to deal in recovery too much, nor from my experience, do they seem to help,you get back to where you once were. And if you do dabble with pharmaceuticals, don’t stigmatize yourself for doing so (remind yourself, it’s what I have to do to make it through right now) and understand you need to find the right mix. I went through gabapentin, lyrica and another anti seizure med just to figure out what worked. And get yourself off the opiates as soon as possible if your still taking them, they wreck havoc on you. Also, try hot packs and ice on your neck… Works wonders… And get a good Chiro adjustment. You would not believe how they had your head pinned to do what they did in surgery. My neck is still wonky, and we’re talking July 31st of '12. Above all, be kind to yourself… Do not expect overnight success here. Go easy on you, says the learning how not to be a perfectionist teacher.
Thank you so much. I was considering making an appointment with a neurologist and you've convinced me. I did not have my procedure done by a neurosurgeon, an interventional radiologist did it and he's young, technically very good, but I don't really think he has an overabundance of experience with brain injuries. I think he's probably had 1 or 2 stent patients that had a very smooth recovery and thinks they all should be the same. He's pretty much cut me loose with a "you're neurologically normal, the headaches are normal...see your family Dr with questions" and my family Dr is afraid to touch me and refers me back to him.
I appreciate your encouragement!
3 months to my coiling. I too still have same headaches
I also had my stent done by a neuroradiologist but with a neurosurgeon present (I think) as both of them came to see me just prior to going to the operating room. I was the 13th pipeline stent they had done so again not much experience. I also have the same problem with my GP as they have no experience and look at me like I am about to drop down dead in the surgery if I do go to them with problems- mainly headaches. They do just refer me straight back to the hospital though and I usually get an urgent appointment there. I have had the support of a neurologist throughout though. Initially because it was her I was referred to for further investigation of my double vision/squint and then after because I was told headaches were always a complication of any head surgery/injury and the neurologists are the ones who help to manage them long term. I would definitely say to see a neurologist and they will be able to help I am sure.
Hope it gets easier soon. I have had 11 days headache free followed by a 1 day migraine and just head pains for 2 days so I am having a good spell at the moment and hoping it continues. I find rest is the only thing that helps recovery. It isn't always possible with working but I do make sure I have a regular sleep pattern and if I have a headache once I am home I just leave everything and rest. I've tried not giving in to them and it just gets worse and worse and goes on for days/weeks.
Hi Linda, I had coiling and stent done in June of 2013. I went back to work 2 weeks after my surgery. I was also very tired. I had pressure in the area of pipeline and would also wake in the middle of the night with sharp pains about 3 months after. I called my doctor and they did a ct scan. Nothing looked abnormal. I would get those pains and headaches for about 4 months after surgery. The headaches got less and less. Now I am at 6 months and it feels normal. I still will get aches in that area but they are not bad. I think mine was just part of the healing. I wish you luck in your healing and hope that it feels better soon. Deb
Yes! Same thing here! My neurologist was a godsend! she’s very young and up on the latest medications but also, her mother was very into natural healing, so she totally gets alternative healing too and is likely to couple a medication suggestion with an appointment to see a Chiro or acupuncture, which has really been great! Again, it took about a good month after taking nortriptyline before it fully worked so don’t expect over night relief if you do go the pharmaceutical route, but it was totally worth the time investment. My husband calls my neurosurgeon a scalpel jockey because he’s done probably over 200 of these pipeline surgeries now (he teaches others how to do the procedure), and though he’s freaking amazing at what he does tell you up front that he will not be the doctor to come to for recovery. What they don’t seem to tell you is how fearful primary docs are to help you following such a new procedure with which they have little experience. Do try sleeping with an ice pack at the base of your skull, it helped me significantly as did lots of naps! I was sharing you post with my hubby and her said to tell you that I would go to work, then come home, throw an ice pack on my neck and nap for an hour when I got home for the first few months following going back to work. I also think I should bought stock in Tylenol. Kicking the opiates was hard too, but the rebound headache effect was horrible.
I do not know how anyone can go back to work a week after surgery. It would of totally been out of the question for me. No way. My vision has been flashing lines for 6 months, the tiredness is unreal, the headaches, I’ve had to pack my entire head in ice at times, pain pills did not phase it, much confusion and thought process, short term memory. I had to go back and have a stronger scan, I like you thought something is not right…I took a pack of steroids which I normally used to hate, they made me jittery…but they were a godsend for my headache, then had another round. Spoke to the neurosurgeons about all this and they said it’s part of the healing process, I said how can people go back to work after a week. They said everyone is different, yet when I went in with the pain 3 months out they said you have to realize you just had a major surgery. Your brain knows there is something new in there and doesn’t like it so it swells and takes time to heal…but yet you told me people go back to work in a week…they said everyone is different. I thought well am I really that different till I joined this blog. No I’m not! Bless you who had to go back to work. I don’t know how you do it. 12 years ago I had a craniotomy for one, then the following year a coil, then this past April a 3 telescopic pipeline and now in October a nother pipeline for the coiled one, it came back out of the coils…I’m so over all this. Thankful don’t get me wrong but this last one was really tough mentally to get through, I’m still struggling…Good luck to everyone on here and God Bless, Holly
I hope everything goes well for you in October, Jette and I will be thinking of you
Ive been told I should do the stent. Do you still have headaches? TY
Wow…this is a blast from the past! I had forgotten about this forum…at one time it was a daily event! So its been 6 years since my stent…and I am happy to say my giant aneurysm is now just scar tissue…the stent is fully functioning and there are no issues with it at all. I have some very slight double vision as my left eye muscles are not 100% functioning but normal glasses with a small prism correct that. Headaches- yes I have migraines…not from the aneurysm but from the surgery and general trauma inside my head. It took several years and a lot of trial and error to get the migraines under control. I take propranolol every day as a preventative and rizatriptan and cocodamol if I have an attack. I am now able to do everything I used to do but if I push myself too hard I will get a migraine…however I manage them. I have some memory issues and word recall is a problem if I am tired- but noone notices if I havent told them my history. I would say ‘go for it’. Whatever you do will have a recovery period…for me ‘doing nothing’ wasnt an option…there were times in the first year I wasnt sure I would get back to being me but I did and I have. I manage a care home again…I am successful in my work and I look after my grandchildren (baby and toddler) …I have a full life …and I love it!
I do still get migraines, but have had them since I was 2. They were unrelated to the aneurysm. Mine is also fully resolved and I am now on 5 year angiogram checks instead of yearly.
Thank you… I go in 9 days for my aneurysm… Its nice to see a good outcome.