Interior Carotid Artery Dissection--Who Knows Their Stuff?

[bigangel]

I am a 34 year-old active, white female, average height, very healthy weight.  I had an interior carotid dissection over a week ago, they think from a sports trauma (though I didn't do anything where I knowingly hurt myself).  Luckily, I have 100% collateral blood flow, no brain damage, no shifting, etc...best possible outcome.

Interestingly, in addition, I have tested positive for antiphospholipid antibodies (after testing false-positive for syphilis---common, who knew).  More tests reveal that I test positive for anticardiolipin antibodies, negative for lupus.  They have hooked me up w/ a hematologist for follow-up on this (and he is monitoring my Coumadin for the next 3-6 months).  He is running other tests to make sure that I do not have anti-beta 2 glycoprotein 1 instead of anticardiolipin.  Evidently, the test he ran 1st is not a specific test?  For some reason, the anti-beta would be worse?  I don't really understand all of this.  He doesn't seem to think there is a connection between what
happened to me (icad) and the antibodies, but there seems to be some research saying that there might be (several journal articles).  He says my antibody levels (whatever type they are) are low, so they just need to be monitored & if they
ever get high, I might need aspirin therapy to avoid a stroke.

Right now, my biggest frustration is that NO ONE seems to be able to tell me what I can and can't do.  I guess I am some sort of scientific anomaly, given that I survived this w/ no evident complications or neurological deficit.  Plus, they are dealing with someone who is used to lifting 3 days per week & doing cardio 3 days per week.  Can I drive?  Can I bend over?  Can I do laundry?  Go Christmas shopping? Work?  Have sex?  Exercise?  One doctor says I'll never exercise again.  One says, maybe in 6 weeks.  One says maybe in 6 months.  BUT, everyone qualifies everything they say with, "but I'm really not sure."  Can I just walk around a track right now?  Isn't that kind of like walking at the mall?  Can I do whatever I want as long as I keep my heart rate below X?  The official word from my discharge is not to lift anything over 2 lbs. and to pretend like I had abdominal surgery.  Please, I can lift a 30 lb. dumbbell over my head without even thinking about it, & I can do my fair share of sit-ups, so give me
some information that is relevant to me.  So, I contacted a sports medicine orthopedist that I have seen to see if he knows any doctors who work with athletes recovering from this condition or other head/cardiovascular type injuries/stroke.  If you can point me in any sort of relevant direction, or know anyone I should talk to, I would appreciate it.  You know, no one ever thought Lance Armstrong would get on a bike again.  I just got certified as a personal trainer & was in the process of opening up a gym.  This is not just a simple inconvenience to me.  All this indecision makes me wonder if I shouldn't have asked more questions when they said surgery
wasn't an option for me (too dangerous when blood thinners should do the trick).  Do they REALLY know how to treat this condition?  Where is the cutting edge science/medicine with respect to carotid artery dissection taking place?  I just want to find a doctor who wants to try to help me get back in the gym if at all possible.

[Tewsweet]

I am wondering if your family Dr prescribed meds to help or the diagnosing DR...Our storey is so very similar except that my family GP will not prescribe any pain medication nor anxiety meds because she feels ùi should learn to deal with this over the next 6months of healing (waiting on advise of neurosurgeon to see if it will repair on its own) Left ICA dissection 50% occlusion. It is like she wonèt believe the pain I am in if I sit in one position for any period of time...her solution was to move every 10minutes:( My whole worl changed as I was a avid crossfit and hockey player and now after having to bug for 12weeks to get a CTscan that proved my injury Ièm feeling trapped in a broken body!!!!!Were there any vitamins or diet ideas that you feel assisted in healingÉ Ièd love to know anything that I can do.

[Little1kent]

Hi everyone,
I have recently come across this page, and it is a real help to hear other people's stories, and hear everyone's feedback!
I am 27 years old, and 2 months ago, on August 20th, I had a stroke, and was in hospital for 9 days, while they tried to figure out why it happened.
I am as active as it gets, I am a dancer, and I dance pretty much every day of the week, run a dance school on Saturday mornings, and work as a stock manager in a shoe store, which is a very active job! I took part in the London to Brighton bike ride last year, and perform in shows and competitions with my dancing, as often as I can!
So you can imagine it was quite a shock for everyone who knows me, when they found out what had happened! I lost all feeling in the whole of my left side, but fortunately I have worked hard to regain most of it. I have had MRI, ct, ultrasound, echo, ct angiogram, you name it! First they found a possible hole in my heart, then what they thought to be a twisted artery,but with closer inspection, they have discovered an aneurysm, which is secondary to a dissection of my right internal carotid artery, and also another aneurysm on my left internal carotid artery. The dissection looks to have caused a blood clot, which travelled to my brain, and cut off the blood supply, causing the ischemic stroke.
It is a lot to get my head around,but each time the doctors tell me something new, I like to research it, and find out exactly what is happening to me. This site is so helpful, to see how this condition affects so many different people in so many different ways!
I have been told I am not allowed to do any heavy lifting ( which is what I do all day at work, so my job role has had to completely change ) no strenuous activity, or dancing for at least 6-12 months!!   Nothing that will manipulate my neck. This basically describes everything I love to do and am passionate about!! The types of dancing I do ( pole dancing, aerial silks, aerial hoops, street, Zumba) all involve strenuous lifting and manipulation of the neck, so hearing this was the hardest thing for me. I am not the person I am without doing what I love. I am usually so confident, happy, and I love being silly and making people laugh! But now, I am a shadow of my former self, and I am really struggling to find the pieces of me that I seem to have lost!!
All I want is for someone to tell me that things will get better, and someday soon, I can go back to what I used to be, and do what I love to do.
I am looking into seeing a counsellor as I think it will help me offload my frustration and pain.
Writing it down and putting it on here I think will help too, knowing that anyone who reads this will hopefully understand a little of what I am going through.
Thank you to anyone who took the time to read this,
Leah x

[bronwen]

Hello- I had a number of mini strokes seven weeks ago a result  of a tear in my carotid artery. The tear is healing well however I have some concerning side/after effects which are inexplicable to my Dr's. Sporadically my legs are heavye my right leg feels numb and every day for a few hours a sensation comes over my whole body which makes me feel heavy, weak, tired and vague. I am taking 10mg of Warfarin each day. If anyone has experienced these symptoms I'd loved to hear from you as they are quite anxiety provoking.

many thanks
bronwen

[kaddi2012]

................................I did fairly well for several years.  The only side effect was a kink in the left carotid artery where the artery healed but in a zig zag about the middle of my neck.  I never had bad headaches until the dissection.  No problems on the right side but severe pain on the left side of the head.  I have intense pressure when my head lays flat.  So I have to keep my head elevated when I sleep by keeping it propped up on 3 pillows.
A small pseudo anerysm formed in the left carotid artery close to the left ear in a mass of nerves that affects the sinus area.  In the year 2000 this aneurysm was found and monitored.  By the year 2005, it had grown enough that Dr Grotta was concerned and the fact that the headaches were getting so bad and were so frequent that something had to be done.  Because my tissue tears so easy there were concerns about going in and clamping the aneurysm.  Dr Grotta teamed up with Houston cardiologist, Dr RIchard Smallings and together decided to insert a heart stent.  The reason for a heart stent was because the others at that time were stainless steel and there were concerns that inserting it could tear my tissue.  The heart stent was padded and inserted through the groin area just like a heart stent but pushed all the way up into the carotid artery.  Everything seemed to go fine.  I heard a snap when the stent was opened and immediately the ringing I had heard in my left ear for months was gone.  I was awake for this procedure.  When moved to my room I did began to experience pain in my left side below my ribs.  During routine examination one of the nurses noted that my left side was harder and larger than my right side.  She immediately went out and got Dr Smallings.  While he was checking me my blood pressure began to drop.  I was bleeding inside.  The area where they entered the artery had popped the plug used to seal the artery.  Although pressure was already being applied.  Dr Smallings personally applied pressure to my side for nearly an hour.  Once my blood pressure stablized and the bleeding stopped I was observed in the hospital for a couple days.  There was pain in my left side where this blood formed and took about a month to leave.  The headaches were better!  Doctors were not sure if this would prevent the headaches or not since the stent opened in the area of those nerves and the pressure from it could have caused more complications.

I felt that it was successful and my life improved until Dec 2009.  I had just turned 51.  It was the Christmas season and I was working full time.  I got up to go to work. While dressing I had problems getting my right foot into my shoe.  I should have known better but just thought it was because I had spent too much time on my feet the day before.  If that had been the case why wasn't both feet swollen?  But I didn't question it and continued to get ready and switched shoes.  My husband drove me to work.  When I got out of the car and walked up on the curve I suffered some unusual blurry vision.  My eyes are not perfect but I can get by without glasses or contacts.  So the blurry vision coming and going should have been my second red flag that morning.  But since I wasn't hurting I didn't let it concern me.  The problems with my eyes contnued through the next day.  I went to put on my eye makeup and realized that I had a grey glob in the center of my left eyes vision.  I thought that perhaps it was a cateract.  So I called a eye specialist and he immediately worked me in.  I was told that I had suffered a "eye stroke."  That I was very lucky that they clot did not go into my brain or I would have suffered a serious stroke.  I was also told that the grey glob in my vision was due to damage to the eye artery and the damage was permanent.  This left me with a ghost vision in the right eye.  I don't see two images but a overlapping of a image that I am looking at.  It took me 6 months to adjust to this change to my vision.  I have not been able to drive a car since this happend.  

For some reason, this incident has triggered the headaches again.  Routine tests performed in Feb 2010 found another small aneurysm located close to my left eye.  Like the first aneurysm, this one is being monitored to see if it grows.  The last year I have intense pressure in my left carotid artery.  I sometimes feel like it is going to pop.  The pressure goes up the neck and into my shoulder.  Tests show that I have more than normal white spots on the brain from the migraines or possible small strokes.  I get pressure in my left cheek with pressure on my left nostril.  There is pain that goes into my left ear like a ear ache and bruising sensations on my head like someone has pulled my hair really hard.  I am not allowed to lift over 8 pounds and I avoid lifting anything unless necessary.  I am not suppose to bend over more than needed either.

Routine tests results in June 2011 revealed another small dissection in my right carotid artery.  I was having some pressure in the right ear and at times I would hear a whooshing sound in the ear.

Because of the stent, I was told that I would remain on Plavix and Aspirin for life.  When the blood clot went into the left eye I was taken off the Aspirin and a low dosage of coumadin added to the Plavix (for life).  The Plavix with the aspirin did not do its job.  That was changed in Dec 2009, and so far no more clots and no additional white spots on the brain.

I am going to be 54 December 2012 and so far so good.  I do have some serious memory trouble that is also being tested and recorded on a yearly basis to see if I am dealing with something more serious.  I am not allowed to do any stenious excerrcise so I take it easy, watch what I eat, and keep my doctor appointments.  I don't take any symptoms for granted and call the doctor anytime something new comes up.

I have one sister that is in pretty good health.  My Mom is 75 and in excellent health.  My Dad was a smoker and passed away from COPD.  My parents both came from large families.  I have many Aunts, Uncles, and Cousins.  No one has what I have.  Doctors have told me that it is a variant of Ehlers Danlos and most likely genetic.  I have had the opportunity to go to some family reunions on my Dad's side of the family and meet some extended family.  It appears that some of my Dad's cousins grandkids have had or died from odd disorders.  A 22 yr old 3rd cousin on coumadin for a bloodclotting disorder died from a bloodclot.  Another distant cousin also had a carotid artery dissection, another a little 4 yr old boy had bleeding in his brain that appeared to be a vessel problem.  After meeting  these people or their families and hearing additional stories like these I have no doubt that there is something genetic going on.  I see symptoms related to Ehlers Danlos in my sons like double jointed, stretchy skin, ect.  I do not have the signs pointing to this genetic disorder like the four of them do.  So I do have concerns about their health and their future.  I am fortnate to have a caring and loving hubby.  I do not have to work like my sons do.  They are all grown now and two have already had to deal with some serious health issues.

[Nathalien1983]

Hello, reading all what you have gone through makes me realise how brave some people are despite every hurdle they are going through. You truly are a tough person and I pray that The Lord bless you with complete healing

[kaddi2012]

I was 35 yrs old in 1995 when I was diagnosed April 1st with a left carotid artery dissection.  A serious tear from the center of the neck to the base of the skull.  My symptoms were mild in my opinion.  I would get this horrific icepick stab in my left temple.  Strong enough to stop me in my tracks.  But the pain lasted only seconds.  Because the pain went away I did not think it was anything serious.  I began to have pain in the left side of the neck as well as the back of the neck.  Then there were times I would get pain in my left temple and feel a tightening in my left eyelid.  This happened often when I would be driving.  I do not use my mirrors for fear of not seeing a object due to blindspots.  So I would turn my head to look behind me to pass, ect.  Not realizing I had a tear and I was making matters worse when I turned my head that one day while driving the pain was so severe that I had to pull the car off the road.  While on the side of the road I looked in the mirror and noticed that my left eyelid was swelled way out and that the eyelid was a purplish red color.  But the pain and swelling were gone within minutes.  After a week of discomfort I went to see my family doctor.  I told him about my symptoms.  He told me that I was having migraines.  I questioned him because loud noise and light did not bother my head.  Also, the pain did not last like a migraine.  I asked him about having only one eyelid swell.  He explained that everyone had their own unique kind of migraine and these were the sympoms I was experinecing.  I had no reason to dispute what he was telling me.
The nurse gave me shot and I was told that it would knock me out but when I woke up I would be feeling great.  I went home and slept but when I woke up I had the worse headache in the world.  A few days later the pain in the back of my neck and my shoulder was so severe that I decided that I must be suffering with a pinced nerve.  I contacted a Chiropracter friend and went to his office for a treatment.  While I was there my temple pain came on strong enough to make my left eyelid swell and turn purple.  My friend witnessed this and decided NOT to give me a treatment.  Instead, he ordered a MRI.  Before the results came back I began to get a burning sensation behind my left ear.  Felt like someone welding and burning me behind the ear.  This pain would last longer than the icepick pain but did go away.  I would get this icepick pain several times a day.
When the test results came back I was admitted into the hospital and told I had a tear in the left artery and experinencing TIA's.  First put on a heprin drop and then coumadin.  Spent only three days in the hospital.  I was told not to do anything and take it easy.  I was asked questions about my activities.and what I did that could have caused the diissection.  As a mother of 4 sons (2-16) I was very busy but did not do any kind of sports.  I had recently started working out a local gym but cautious not to do anything too strenious.

Two weeks later.............I felt this awful burning in the right ear.  Not a earache but a burning behind the ear. It was a Friday and I contacted my neurologist.  He worked me in and told me that the chances of having a second dissection without being in a car accident would be like winning the lottery twice.  I told him that the burning was there and there had to be a reason.  He ordered a sonogram of the neck arteries and the doctor performing the tests left the room coming back in with four more doctors.  I was told that this was extremely rare and that if I was not already on the coumadin I would most likely have suffered a major stroke or even death.

Doctors were conflicted on what to do for treatment.  Some suggested surgery, others disagreed.  I was referred to one doctor after another.  Finally, the 13th doctor, a Houston Neurologist, Dr. James Grotta was asked to see me.  He didn't struggle with making a decision or want to refer me to another doctor.  My lucky 13th doctor told my husband to take me home and keep me in bed.  I was not to get up except to go to the bathroom.  I was not to get excited or upset.  My husband did his very best to keep everything normal in our home.  How easy is that with a couple teenagers and a 2 yr old???  I was bedridden from April 1995 until Feb 1996.

After suffering what was referred to as being a Spontaneous Dissection of the Carotid Arteries life has a roller coaster ride.

More in next comment....................

[woodsd79]

My carotid is also 100% occluded. My Dr. told me that it it remains blocked I will have to stay on asprin the rest of my life but if it opened up even a small amout i would most likely be on something like plavix. From what I gathered the doctors would prefer it to stay 100% blocked that way there is really no chance of clots forming and causing more strokes. A small trickle can allow clots to form and pass through putting you in danger. I would be more apt to listen to the vascular doc than anyone else. Please post and share any info you find. I would like to get off the warfarin but like you I doesn't effecty me too bad. I want to do whatever it takes to get back to being active. Yesterday was 4 months since my CAD and im pushing myself a little more all the time. Finally did some short (1 mile hikes) and am feeling better.