I was diagnosed with a 7mm Middle Cerebral Artery Fusiform Aneurysm in Jan. of this year. I live in Nashville and my Neurosurgeon is not comfortable with touching it. I am going to a Neurosurgeon in St. Louis for a consultation on Sept. 25th, then I am scheduled to have the PED surgery on Sept. 26th. I am very, very nervous because this is my first experience with an aneurysm and I have 3 children that I am having to be away from for a whole week. Plus, the whole surgery thing and not knowing what to expect is making me even crazier. I have lots of questions. I started taking Plavix and 325mg of Aspirin on Sept. 12th and I noticed there is 6 refills. Does anyone know how long after the surgery I will have to take these meds or does it just vary? Also, I have severe headaches and memory loss now, which the docs are saying they don't think is caused from the aneurysm (which is hard for me to believe, but whatever). How many of you have headaches after the surgery and how long is recovery usually? Any comments would be appreciated. Thanks!
I had the PED in May 2012, and like you I was quite anxious prior to the surgery. I was on the plavix and aspirin for a week prior to the procedure, and continue it until I go back for my 6 month angiogram in Nov. After that, if no problems, I will begin taking the plavix every other day until Feb. 2013. I'm not sure about the aspirin.
I am 66, and the surgery went well. I think I expected to feel great afterwards and continue my schedule. However, I did have some headaches the first 10 days which were managed with tylenol, and could not lift or bend over to pick up things during that time. It took be about 3 weeks to get back to my routine. Many people are back at full force much quicker. I think because of my age I have less energy on the plavix. I had my procedure at Emory, and felt very confident in the surgeon and medical staff. I'm sure you will find the same thing in Nashville. It is normal for you to feel anxious, and there are not many people you can talk to about the procedure unless you do find a site like this. You will receive much support here. You will be in my thoughts and prayers. Keep us posted.
Hi Chassity,
A lot of stories/symptoms are very similar around here, once you start poking around a bit, you'll start to notice.
My story: After suffering terrible headaches since January, 2012, and seeing various doctors for different diagnoses (including 2 root canals, sinus issues, migraines and even a retina specialist), a neurologist finally administered a CT scan with iodine contrast which revealed an unruptured 5-7 mm right ophthalmic artery aneurysm. A glitch in the office communication prevented the neurologist from notifying me promptly, however a TIA put me in the ER. Having been there two weeks prior for a bring-me-to-tears migraine, they gave me another CT scan (sans contrast), said it was fine, and were ready to discharge me. This time I demanded that they check the results of the CT scan with contrast which I had never received the results of. The ER doctor hemmed and hawed and finally checked the results. He came back in the room obviously shocked with a flock of nurses and announced that I in fact had an aneurysm. Everyone worked quickly after that to transfer me to Johns Hopkins where I undertook an MRI with contrast, an angiogram, a Plavix/aspirin regiment for 10 days followed by the insertion of a Pipeline Embolization Device. I had my PED inserted on August 31st, but continue to have headaches. Since a lot my my pain is behind my left eye and my aneurysm is behind my right eye, I scheduled a consult with a neuro-ophthalmologist who suggested that I may have a neuralgia (either atypical trigeminal or ophthalmic, or hey, maybe a combo of both). My chiropractor has given me the most relief from the headaches, and I've been seeing her twice weekly for the past few weeks.
So, to make a short story long... haha... everyone is different depending on what they have going on. Post surgery, I remember the biggest thing that hurt wasn't my head immediately, but my leg from where they did the surgery because of a small hemotoma and the bruising from the pressure them stopping the bleeding. My chiro has had to work on my hip because in pressing on my thigh they really got my back out of alignment. Small price to pay for another life though. ;)
Medication wise, it's different based on how your blood plays out test wise, but I was on a ton of Plavix before surgery, and much less now. Traditionally from what I gather, you stay on Plavix until your 6 month angiogram and if all plays out well, you drop the Plavix and keep up the aspirin for at least a year, though some for life depending.
My advice? Start making a list of things that help your head, so you can turn to that when you do get a headache. Most likely, you won't be able to take Ibprofin due to the blood thinners. Ice on the back of my head is my best friend.
I hope this gives you some info to help.
Tara
Susan-Thanks so much for explaining your situation to me. I agree with you about this site, I have felt much better about going into this surgery after speaking with more people on here who have been through the same thing or a different type of surgery. I am very anxious and more worried about being away from my children for a week, since I'm having to go to St. Louis to have the surgery, but I know they will be fine because they will be with my dad. I am just not used to being away from them for even a night and I'm worried about how they're going to handle it, but we are going to Skype every day, so hopefully that will help some. Where was your aneurysm? I hope you are doing well yourself and I really do appreciate the thoughts and prayers. They mean a lot to me. :))
Tara-Thanks so much for taking your time to explain your situation to me and listen to my story. It's really refreshing to finally find this site and find people that can actually relate to what I'm actually going through mentally and physically. This site has made me feel better about going in for surgery after hearing other's experiences.
I'm sorry to hear about your experience before you even found out what was going on. Someone dropped the ball and of course, noone was going to take the fall for it and you are the one that had to suffer. You should've been diagnosed properly after the first scan and probably never should've even had the TIA. I hope you find some kind of relief from your headaches.
That's one thing I'm wondering, I had an angio a little over 6 months ago and they had a hard time stopping the bleeding then and I wasn't on Plavix or Aspirin and I had to lay flat on my back for 6 hours straight and they wouldn't even let me move my head or anything. So, I know the bleeding is going to be worse since I am on the blood thinners this time around. Did you have to stay flat for that long after your surgery or were you pretty much knocked out anyway?
Again, thank you so much for all of your advice. You have been really helpful and answered a lot of my questions. I hope you find some relief.
Chassity
Well Chassity we certainly know how you feel. I took adivan up until about 6 days before surgery then switched to Xanax. Took Plavix, steriods and aspirin before the surgery and will take plavix and aspirin until my six month angio. Then I can stop the plavix, but will continue the aspirin forever. I had my 10mm aneurysm for 10 years before the PED was available to me. I will say the most important thing is REST and NO STRESS for at least 3 weeks. Its makes a quicker recovery. Stres will give you symtoms of many things.Thinking of you and how an anxiety crazed person like me ever made it through..btw, I am exercising and doing Yoga again, started last week.(still no downward dog, head above heart)
Chassity, my annie was directly behind my left eye. I had no symptoms, and had an MRI only after my sister died suddenly of a ruptured aneurysm. I was told that all direct line relatives (children and siblings) should be tested. Luckily I was the only one in that line that had one. Mine was large, 13mm, with a large neck opening. My sister, who was my only sibling, died last Feb. and I miss her so much. She never had any symptoms of her annie, or at least she never complained of any.
Here are my experiences: Angios, have had three now. The very first was a disaster in the sense that they made me wait six hours past my allotted time, applied pressure to my groin site too severely and could have seriously injured me, and the nurse afterward was less than sympathetic. As for the procedure itself, most angios are done awake but with some sort of medication to help you relax - I felt scared the whole time. Most people only feel warmth with the injection of the dye, but I felt great pain. They made me stay lying flat, no head movement even for four hours on that first one, despite me getting a terrible neck spasm (because I was so nervous and uncomfortable). They barely fed me after, broth and juice really, even though it had been over 24 hours since my last bite or sip of anything!!! I have never returned to that hospital or doctor… My next angio was better in some ways and worse in others. It was a different type, a test balloon occlusion, but the basics were the same. It hurt with the dye, I was scared, I was happy when it was over! I had to lay flat for six hours on that one because they used both sides of my groin. I got sick from the “happy” meds, and there was a national shortage of Zofran to counteract the nausea so I got Phenergan which knocks me out. On the plus side, I got a nice meal, and I learned how they are supposed to hold the pressure on the groin so as not to risk injury. Lol.
Next was my procedure. I live in WA state, and my husband and I had to fly to AZ state, leaving our three daughters behind for what ended up being nine days. He used FaceTime and later so did I to talk with them. They were 6, 4, and 1 at the time. I was put on the Plavix and325mg aspirin about three days prior, and got my first terrible bruise the night before after barely bumping my hand on a bathroom door at a fast food restaurant. I have no recollection past talking to the doctors and anesthesiologist - getting put under, I don’t remember them even starting! I remember waking up to them telling my husband they were taking me back under because they decided to add more pipelines - I think I have six telescoping together now. I stayed in the ICU for five days. Normal is like two days. I had many transient symptoms to move past, like numbness on my left side and nystagmus (eyes rapidly moving around causing intense dizziness and nausea). I also am one of the few that had to have coiling done behind the PED, due to the size and location of my anuerysm. Mine is/was 23mm and in the basilar artery (a high volume artery, the only one present for me in the back left of my head - if I had had a second main artery there, I could’ve just clipped it and been done!). They had a hard time stopping the bleeding in the groin I know, but since I was so out of it, I hardly noticed. I had a lot of head pain, even upon discharge, and went to the ER thenext day to check on it. I had a CT scan then, but they said it looked ok. I refused another angio, being overcome with emotions and feeling physically overwrought and unable to deal with more needle pokes and body trauma. I had major nausea for a couple days, then flew home. I was in terrible pain in my head for weeks after, on a daily basis, and ibuprofen and tylenol only barely took the edge off, but over thenext four months the headaches dissipated to every few days at least. At six months post op, I have headaches maybe three times a week, and have even gone nine days straight without any. Someone else mentioned it, but keeping your head above your heart is key to avoiding the throbbing during the head pain! I have had an angio at four months, and it didn’t hurt when they injected the dye! I still got sick after due to the “happy” meds, and when I go back next month I will be requesting anti nausea meds immediately following the test! I had to lay flat for six hours, but had no trouble. I am always quite sore there, in the groin site, but that is all. My doctors told me I was to stay on the Plavix and aspirin for six months, then I could drop thePlavix and lower the aspirin to 81mg for life. I am still on the aspirin and Plavix though because my four month angio showed a leak. Once I get a clean angio, or more pipeline parts depending, I can revisit when to go off the meds. Iam by far NOT the poster child for a good experience, nor am I a standard case, but few here fit that bill it seems. We have good cases, we have tough cases, we have good experiences and bad ones. My best advice to you is to read up on it all, and have as much knowledge as possible going into it. Know that the PED is the best device out there, for the tough cases, and the successes are many! I am a success, despite my struggles, and so are all of us here, because we are alive to tell our stories!
One of my favorite authors, C.S. Lewis of Narnia fame once wrote, “Friendship is born at that moment when one person says to another: 'What! You too? I thought I was the only one.'" And yes, me too! It was too refreshing to find people that had not only had similar experiences but didn't pass judgement on me for my own, or my own ranting...lol. I don't think our spouses or significant others can really truly grasp what we've gone through even though they are our best support force.
I think I needed to go through what I went through to understand some things that I may never have understood and maybe, just maybe, to reach some students that I may have otherwise never have been able to reach, and to appreciate this world just a little bit more before my next one. I'm very excited because my neuro just put in for me to have a nerve block shot which I'm hoping will really get rid of all the pain. Sometimes I get scared to hope again, so cross your fingers for me. ;)
Do tell your surgeon when you meet with them about your experience with the bleeding. They put a plug thingy into your artery so they can keep it open and thread the wires through more easily. I do remember being disappointed that they waited until I was awake and in the recovery room in ICU to take this out and stop the bleeding with pressure. But they did choose a really hot resident to do it, so I sucked it up as best I could and asked for a lot of IV pain meds. It took about a half hour to stop. I was flat for the two hours after surgery, then another two following the removal of the plug thingy, then they gradually sat me up until they moved me into a chair where I could sit and eat a really bad sloppy joe and immediately requested anti-throw-up meds... might want to ask for that sooner and/or bring snacks of your own...haha.
My surgeon told me I'd walk out of the ICU the following day, but my headaches were really bad, and honestly, they didn't get to me for surgery until around 8ish in the evening, so I spent one night in ICU following the surgery, and they checked me back in to the neurology wing for another night to get my pain under control before discharging me. If this happens to you, remember that the magic number to get your pain under to discharge you is 3... your pain has to be below a 3. My husband was worried because they seemed to want to get me out of there before my pain was diminished, so he asked his mom who is a writer of Med-Surg Nursing books, and she was right. And oh yeah, depending where your annie is, don't be scared if you see weird flashes of light and glowing fireflies following surgery -- though my aneurysm was by my right opthalmic artery so that may be why.
So yeah, that's my advice to you for the day of -- remember the number 3, expect the best, prepare for the worst, wear lip gloss cause you never know how hot the resident is going to be, ask for anti-nausea meds before your need them, and always bring a snack and an extra pair of socks.
I also have a 2 year old at home, so I know your worries on that front. Talk to your kids so they know what to expect (you're going to need lots of naps, quiet, and bad daytime television), and get help for the first 3-4 days. My mother-in-law was a godsend. If you still have pain after the first week, get in to see your neurologist ASAP, don't wait. Nortriptyline probably saved my life.
*smiles*
Tara
So glad you mentioned the flashing lights you had after surgery. My annie was behind my left eye and after surgery, and actually for several weeks, I would see several purple heart shapes. It would depend on how I turned my head or the light/darkness of a room. I told several of family and friends and they seemed to look at me like I was imagining it. I think there are all different experiences of light and flashes that some of us experience, maybe depending on where the annie is located.
hello I have had my PED since June 28th when in for an mri last weeek he said I should stop my plavix but keep taking my asprin i still had a small area that he thinks in time will be fine he said it is doing what it is surpose to do . the smaller annie was coiled and that one is fine now. i had mine done at mayo in jacksonville fl and was happy to here that my doctor was please with results so far i go in december for another angios then . But i feel good still get worn out easy and it is a different thing i tell everyone i need to rest my brain. if anyone knows what i mean . I have had a stressful week and last night i went to bed at 4:30 and stayed there for the night think i got enough sleep. I am thankful for this group and the surport thank everyone .
Hi Chassity and welcome again to our PED Group!
I think I told you that my PEDs were implanted almost 16 months ago, when an attempt at coiling failed due to the wide mouth of my annie. I was sent home from the hospital and prescribed 81 mg aspirin and 75 mg plavix for 10 days. On the 10th day, once my levels were check, I had the PEDs implanted. I have two PEDs which together are called "telescoped" -- this is done when an annie has a large neck. I had surgery at 11 am and was home in my own bed by noon the next day, following an overnight in neuro ICU. The worst part? Lying flat from the time the surgery was over until about 10 am the next morning when they finally got me out of bed. It was quite annoying that they came into my room every 1/2 hour to monitor me and check my groin area and vitals. I was one of the first few to get the PED in the Philadelphia Region, just about 6 weeks after the PED was approved by the FDA for use here in the US.
I had MAJOR migraine headaches, which I never suffered, on and off for the next 6 months. Of course, I was told that they were in no way related to the PED. I can honestly say, that I believe the headaches were pure tension caused by the anxiety of not knowing I had annies, then finding out I had 2 annies and then finding out that this new "PED" surgery was my only option. Anxiety and stress come on full force!!
I was told that 6 months I would have an MRA and then 3 weeks later, an angio to make sure the PED was doing its job and also to check for growth of my other annie. At that point, I would have an MRA at the 1 year mark, and if all went well, an MRA every year thereafter. After the 6 month mark, if all looked good, I would be able to stop the Plavix, which I have to say was great, because boy did i bruise! However, I would be required to take the 81 mg aspirin for the rest of my life. I can live with that!
It's been quite a year and a half for me and I can honestly say the first few months were stressful, anxiety filled and a lot of why me questions. Despite the fact that I have another annie that is in my ICA on the opposite side, my stress and anxiety are just about non-existent, as far as my annies are concerned. Other things in life, well that's another story for another forum!!!
Not really knowing anyone, other than Giovanni, that had the PED implanted, was a very scarey thing for me. I researched and found articles and the clinical trial reports, etc. and Giovanni and I together gathered that info and started this group so that others would be able to be armed with as much info as they could be.
You will see that different doctors do different things regarding the meds, but I will tell you that my doctor is an approved PED proctor and has proctored and performed hundreds of PED implants since the FDA's approval back on April 6, 2011. His partner in the neuro practice, had done the PED both for the clinical trials, I believe he was in Arizona at the time, and as part of a compassionate use here in Philly.
I believe today is your surgery day and have you in my thoughts and prayers for a successful outcome. When you are up to it, please keep us posted and remember to rest rest rest!!! That is extremely important after your surgery.
Best wishes and lots of prayers your way and again, Welcome to the PED Group!
Linda
I had my 1st PED on 8/12/12 and I was feeling good within 2 weeks. I was only in ICU for 1 night and discharged the next day. I had my 2nd PED on 9/13/12 and spend 2 days in ICU and released. I had sore leg on 2nd procedure and some bruising on my leg. I also noticed a burning sensation on my leg but Neurosurgeon said it would eventually go away and it has. I have my final follow u appt on Oct 9 and plan to return to work on or before 10-15. So the PED recovery has been fairly easily. Memory loss well I noticed my short term memory loss after my 1st crainotomy in 2007. I have to put all y appts on my calendar, set alarms for everything. Write lists for groceries. I even write a list before I travel to make sure I don't forget to pack the important stuff. I had no headaches before my 1st crainotomy. I have had heaches which have turned into migraines since 2007. I started taking plavix & 325 msg of aspirin 2 weeks before my 8/2/12 PED procedure and I have not stopped taking it. Neurosurgeon told me I would be taking until Mid december. I have my angiogram at 6 months to see if the PED is doing it's job. I have had 2 crainotomies and 2 PED's and my recovery on the PED's is so much quicker & easier than the crainotomies. Please keep us posted on your recovery. Praying for a speedy recovery.
Hello there! Curious how your procedure went and how you are feeling. My husband is speaking with a neurologist in St. Louis next week about this procedure. Also curious if this was your doctor as well.
Hope your doing ok!
Valerie
Valerie, you do know there is a page before this one with many comments, even my 2 cents. Its kind of a piece of cake, except for the stress, and a big need for rest. Good luck Valerie's husband!
I’ve been reading. It does seem simple! My husbands name is Brent 
thanks you for responding!
amen
That sound horrible
I am having PED placed at Emory on May 11th. Who did your surgery if I may ask? My Annie is behind my right Eye. I’m extremely nervous.