Anyone been to WDW with VAD?

[aussietravellers]

I have just found out this week that I have Vertebral Artery Dissection, the Neurologist thinks its about 3 to 4 weeks old. I told him that we were going to the USA in September and he said "mmm, how much time does that give us" I said about 13 weeks. So he said he will do another MRA a couple of weeks before we are due to go, so he didn't say that I couldn't travel but didn't say that I could either.

Has anybody else been to WDW with VAD that would be about 4 months old? I know that I wouldn't be able to go on any rollercoasters. I really have never heard of this thing until this last monday and it's very stressful and I don't seem to be able to find much infomation. The Neurologist doesn't seem to provide much info either so it's all up to Dr Google but I still can't find out too much. What I do read really scares me, I thought this would heal in a few weeks and I'd be right but it seems to linger on for a long time.

Would love to hear of others personal experience with VAD and particularly if you have been to WDW (or DL) with it.

Thanks

 

[KPeveler]

Honestly, I would find a second opinion before going. Has he cleared you to fly? I only know about Aortic Artery Dissection, but it does not seem like something I would tell my patient to just hang around with!

Especially if your doctor is not giving you enough information for you to feel comfortable, I would speak with another doctor. Sometimes they just don't know enough and won't admit it!

 

[M5ward]

Your doctor hasn't outlined a treatment plan or anything? Is having another MRI/MRA before you go to WDW the only thing he has recommended? I thought the usual course of treatment was anti-coagulant medications if tolerated.
I know that VAD is pretty rare, so you should be questioning your doctor about exactly what you can and can't do during the healing process and after.
Try this site for some information:
http://www.vertebralarterydissection.com/

 

[M5ward]

As a follow-up - I only know what a VAD is because my husband had (among other medical issues) a carotid artery pseudoaneurysm. In searching for information on his condition, I came across the VAD site. My husband had a coil embolization to seal the aneurysm while VADs usually can self-heal. We flew to WDW about eight weeks after the coil embolization with no problem. He does avoid roller coasters but goes on the jerkier rides like Star Tours and Dinosaur. You should specifically ask your doctor about which rides you can or can't go on.

Good luck..and enjoy your trip to the World.

 

[aussietravellers]

Honestly, I would find a second opinion before going. Has he cleared you to fly? I only know about Aortic Artery Dissection, but it does not seem like something I would tell my patient to just hang around with!

Especially if your doctor is not giving you enough information for you to feel comfortable, I would speak with another doctor. Sometimes they just don't know enough and won't admit it!

I did go and see a cardiologist and he put me on blood pressure meds and its one that slows the heart down too to give the arteries a bit of relief. I have been borderline hypertensive but he has never medicated me before but he said now due to this VAD that I had better start on them.

I am thinking of seeing another Neurologist but the one that I am seeing is supposed to be very good. I just think he is lacking a little in his communication skills He didn't say that I couldn't fly, but he didn't say that I could. He said that he would be doing another MRA in 3 months and I remembered our trip to the USA and I said "oh we are going to America in 3 months" He said "mmm how long have we got" and " I said about 13 or 14 weeks" Then he just said ok.

Your doctor hasn't outlined a treatment plan or anything? Is having another MRI/MRA before you go to WDW the only thing he has recommended? I thought the usual course of treatment was anti-coagulant medications if tolerated.
I know that VAD is pretty rare, so you should be questioning your doctor about exactly what you can and can't do during the healing process and after.
Try this site for some information:
http://www.vertebralarterydissection.com/

He has put me on Asprin for blood thinning. He said it looks like I have had this for three weeks or so (which I think it's four weeks because that's when I put my neck out, well I thought I put my neck out, it was the worst pain I have every experienced in my life), he said the tear goes from the top of C1 to bottom of C2 and there is a large (can't remember the correct name) mass where the wall of the artery has seperated from the tear that is filled with blood and clots, sort of like a big bump you get if you hit yourself and it's going to take time for this mass to go down. He did say that whilst the artery is restricted due to the mass, there is still blood flow to the brain. He then said that they would do another MRA in 3 months and that's when I said that we were going to America in 3 months. He also just said no neck manipulations (chiropractor). Aside from that, he just did tests to see if everything was OK and that I hadn't had any neurological problems from the tear, which is a miracle. But nothing on no heavy lifting, how long it will take to heal, So everything that I have learnt is from the internet (including the website above, thank you for giving that to me). I do have a list of questions for the Neurologist when I go next week. My cardiologist said that probably the reason that you are getting so little information is that it is rare and it is even more rare for somebody to have this and be walking around without any problems (due to most people having this discovered after a stroke).

As a follow-up - I only know what a VAD is because my husband had (among other medical issues) a carotid artery pseudoaneurysm. In searching for information on his condition, I came across the VAD site. My husband had a coil embolization to seal the aneurysm while VADs usually can self-heal. We flew to WDW about eight weeks after the coil embolization with no problem. He does avoid roller coasters but goes on the jerkier rides like Star Tours and Dinosaur. You should specifically ask your doctor about which rides you can or can't go on.

Good luck..and enjoy your trip to the World.

Thats good to know. I was thinking if we do go, I'd be too scared to go on any rides for fear of tearing the artery again. I think it's the airtravel that has me most nervous, it's a 14 hour flight to LA, then a 6 hr flight (something like that) from LA to NY, then the 3 hr flight from NY to Orlando, then the 5 hour flight from Orlando to LAX and straight back onto another 14 hour flight home. If I still have blood clots wandering around in my neck I think it will be a very stressful flight, my anxiety will take over .

Thank you both for your replies . As this is really just happened and is very overwhelming and I guess I will find out more information as time goes on.

 

[KristiKelly]

I just found this thread, I would go for a 2nd opinion.

My husband was diagnosed on July 4 w/ VAD & stroke (he's 43).
On Sat. July 3 he jumped off the diving board, a few minutes later got really dizzy, then developed a "brain freeze" headache that wouldn't go away. On Sun. 7/4 I finally convinced him to go to the emergency room. They did a CT scan which showed possible stroke. They sent him directly to UNC for MRI (we are so fortunate to have 3 medical schools within 1 hour). Fortunately, he had no major effects from the stroke, just a little dizziness. He is so lucky.

He has been put on coumadin (blood thinner) for 3 months, taking Lovanox injections (another blood thinner for ~ 2 weeks - until coumadin levels get ok), after 3 mo. he will go on aspirin for life. He was told NO physical activity, lifting, straining, anything that could put strain on his arteries (he has a tear in both left & right vertebral arteries) for 6 months. At 3 months point he will have an MRI, and another at 6 months.

We are planning a trip to WDW in about 6 mo. but we only live 10 hrs drive away and have been numerous times so we can take it slow. IF you can, I would postpone it until you are cleared by your dr. and have no worries.

We have also been on www.verteralarterydissection.com and facebook also has a group.

I would be really worried about flying since that could put you at risk for blood clots.

If there is a medical school with a neuroscience hospital, I would definitely try to get in.

Good luck on your recovery, please keep me posted.

 

[SueM in MN]

I know someone who had a catastrophic VAD related to a chiropractic adjustment. She felt a pop and a strange sensation during rhe adjustment, the chiropractor said it was not a problem. She went home, had a headache, went to bed and woke up unable to move. She was at first thought to be in a coma, but turned our to be in locked in syndrome, unable to move anything except her eyes, not able to talk, on a ventilator.
That was about 5 years ago and she us still locked in. I don't want to scare you, especially since it appears you are recovering, but VADs can be dangerous. In her case. It was a large , sudden tear caused by the chiropractic treatment, so there was no time for action.

I guess my question for the doctor if I were you would be what he expects to see in the followup MRI right before you leave and what action would be recommended based on what he sees. If it's resolving, but slower than he expects, would he still think it's OK for you to go?
What if it has not made any progress?
What situation would suggest to him that you should not go? And how likely is a situation like that to happen?
What would he do if he were you?

I would check into what your options are for postponing your trip - what penalties would there be? Would it be different if you postpone rather than cancel?

Also, is the doctor aware how long a flight time it is? If he's been to the US, but on the west coast, he may not be thinking of the extra distance to go from LA to Florida.
I have traveled from the middle of the US to Amsterdam, then on to Belgium. That was a long flight at 8 hours, but it is nothing compared to your flight. I would want to know I was 100% before taking such a long trip.

 

[KristiKelly]

WOW Sue!!! That is horrible about your friend. I can't remember if it's on vertebralarterydissection.com or the facebook group but there is a petition to stop chiro adjustments. Even though an adjustment didn't pertain to my husband, I am going to sign it. It's very scary!!! My dh is so lucky, he did stroke in his cerebellum, but had no numbness, mobility issues, swallowing difficulties, etc. He has a "swaying" feeling every now & then but that's it. I will keep your friend in my prayers, hopefully she will recover in time. I thank God for how lucky dh is. He had a tear in both his left & right vertebral arteries last week. We are slowly learning our new "normal" for now.

 

[SueM in MN]

WOW Sue!!! That is horrible about your friend. I can't remember if it's on vertebralarterydissection.com or the facebook group but there is a petition to stop chiro adjustments. Even though an adjustment didn't pertain to my husband, I am going to sign it. It's very scary!!! My dh is so lucky, he did stroke in his cerebellum, but had no numbness, mobility issues, swallowing difficulties, etc. He has a "swaying" feeling every now & then but that's it. I will keep your friend in my prayers, hopefully she will recover in time. I thank God for how lucky dh is. He had a tear in both his left & right vertebral arteries last week. We are slowly learning our new "normal" for now.

It comes up as a 'smart advertisement link' on many of the VAD information pages.
I hope your DH and you adjust to your new normal and that your new normal ends up to be a good place to be.

 

[aussietravellers]

Oh Sue, that is just terrible. What an absolutely devastating thing to happen. I am just so very very lucky that mine was not made worse by going to the chiropractor. I was going to him for 5 weeks, up to three times a week because I was in so much agony with my neck and head. Because I have a fused third and forth vertebrae with no disc, he was very very gentle (and because I was in so much pain). He would also ice my neck for about 20 minutes before each visit, I wonder if this helped me also from not making it worse and having a stroke. But trust me, I will NEVER be going to a chiropractor again

Anyway I am off for a second opinion next week. I have been waiting for a month to get into this new neurologist. I did go to get a second opinion but he was a neurosurgeon and not a neurologist so whilst he did give me a lot of information he did say that it wasn't his speciality and said that if I were his family he would be seeing somebody else for a 2nd opinion, so he referred me to a neurologist in his building so I will see what he says.

I am at 10 weeks now from when it happened and 5 weeks from diagnosis and am doing well. I have had my current neurologist say that flying will be fine (as it will be 4 months then) and also my cardiologist said that flying will be fine (and they are well travelled, so they know the distances). I will be asking the neurologist I see next week also about flying. I do have another MRA at the end of August, two weeks before we are due to go, so I will just wait for those results and if the DR says no to travel, then we will not be going, but if I have three specialists saying flying is fine, then I will be happy to go. We are going to New York for a week before going to Orlando for three weeks (we are in the US for a month). But we are planning on taking it easy, my biggest challenge will be with our luggage, getting it off the carousel not being able to lift the bags. In Orlando I'll be OK with Magical Express, but landing in LAX and at JFK is my only worry.

Anyway thank you for your replies. I hope that your friend does recover one day

KristiKelly, Thank you for your replies
I have joined the VAD website, searching the web was one of the first things I did, trying to understand this and find information. It is such a shock when you find out and as you said adjust to your new "normal" life. I completely understand what you are going through. We don't have a neuroscience hospital that I am aware of in Australia. This is apparently such a rare thing and with Australia's whole population being that of the city of LA in the USA, we have even less people here with this and it's very very hard to find information about it.

I know I'm going to be fine. Apparently as time goes by the risk of stroke decreases so being at 10 weeks, I'm feeling confident that I'm going to be fine and am past the worst of it Trying to be positive.

to you and your DH and I hope that his VAD heals quickly