Migraine

Well, I think now I can freely discuss what is going on with my PFO situation.

St. Jude's has agreed to pay all medical costs relating to the care of my residual shunt. Right now I have 2 cardiologists who have assessed my last TEE and TTE, and have come back with some surprising reports.

In June, my images came back from the cardio who did my procedure and the principal ESCAPE investigator in New York. They said my images were exceptional and that it appeared my PFO took doubly-long to heal over. They said I might be experiencing shunting from a Arteriovenous Malformation in my lungs. Of course, at this point I've had 5 echos, one TEE, and about 5 or 6 TCDs....Ridiculous. I have really been jerked around by these...less than desirable "doctors."

Well, my husband asked for another TCD, just to see if there were a delay in Valsalva with the bubbles that might indicate the AM. The results came back immediately; there was a large shunt in my heart, again a 4, and then a 5+ on strain. Definitely NOT an AM. So what's the deal?

I have been in talks with a patient advocate some States over. I collected my films from the hospital and sent them her way to be looked at by an interventional cardiologist. Bear in mind the choice of doctor to fix my heart is mine. My migraine specialists here have been working with a local cardiologist, but I will get to that in a moment.

The out-of-town cardiologist took a look and my films and said the quality was terrible. Not only that, but it appeared as if the two sides of my device weren't anchored together correctly, and that my hole was too large for the device that was placed, which means the cardiac surgeon here shouldn't even have placed it. The team should have withdrawn, brought me up, and they should have told me they couldn't complete the procedure.

The local cardio noted that the films were pretty bad as well, and said there was definitely a large shunt there, but he only got one film, the TTE, instead of the TEE and PFO closure procedure the other cardiologist did. I did not know the hospital was being so stubborn about my films or I would have gotten more copies and taken them to him myself. But, no one called me to tell me there were problems. So I didn't make copies of the others and they are out in Colorado for the time being.

What happened next really beat me down pretty hard...And has forced me to make some hard decisions. I wanted to stay in town to have the procedure if necessary. But the local cardio is not sure he will be able to procure a good outcome and he's afraid I will end up worse off with migraines than now (like I can even imagine it being worse than this, but I guess it can be). I think he's an excellent doctor but he is pretty new on the scene...He will be a fantastic cardio when he's had more experience. Also, he's the doc coming in to fix the mess left by the previous cardio, and he is not sure he wants to deal with the fallout from that. He just did get his license in interventional cardiology. His approach is to look at the heart via ICE and to close it if possible. There is no guarantee that he will be able to do so, and that's OK (more on that later).

I spoke with the cardio from Colorado as well. He has been doing these procedures for years upon years and he teaches these things. His plan is to put me under for a 3D TEE, and evaluate the heart before going in with a cath. He's keeping a team of people on hand, especially with a pediatric cardiologist who can finagle around difficult heart interior situations if the device closure looks to be a little trickier than thought. A neurologist will also be on hand just in case. However, he may get in there and find out he can't close it.

Not having the PFO closed is FINE with me. I just want a yes or no answer, whether or not this can be fixed. It's all I've wanted for the past year but I've been jerked around so much, and gotten sicker. I just want someone to LOOK and TELL ME what's going on, so I know, so I don't waste my time with pain medications, so I don't keep wasting my money, and so I can decide on whether or not to go for disability. I can't keep living life in limbo because it is costing us everything.

So I decided to go for the Colorado doc.

Well, my coordinator at my headache center caught wind of this when Colorado called to talk to my specialist. She promptly called me back and chewed me out for talking to another doctor, asking me why I did it and why did I think he was better qualified than the local doc, why did he need so many staff on hand during the procedure, and they thought I wanted to stay here for the procedure. My mig doc had done SO MUCH to get this all worked out and blah blah blah....Making me feel like I was 10 years old, basically, I felt so bad when I got off the phone with her, as if I had been bullied into swapping to the other doctor (whom I DO like, I just don't think he's as confident as the other doc, or ready to take this case on). So I contacted my awesome advocate who reminded me that it was MY decision, all my mig doc had to do was make sure St, Jude's lives up to their end of the bargain, and that I had hired THEM to do a job for ME and they weren't living up to their code. Indeed, everyone I've talked to said it's not their position to chew me out about the care I should be getting...Since it is my body and my ordeal.

So, next week I will be sending a letter to get my records sent to Colorado, and I will be saying goodbye to my migraine specialists after these events are over with. They are not being professional with me and my needs are being brushed aside. I am not sure if a PFO closure will be the answer to my problems but I need to try before I resign myself to medications the rest of my life. If I don't try, I will never know. Plus, I feel like I have been lied to but those involved with the study. Maybe not by the mig specialists, but by the cardio side. I feel they just want to shut me up and move along.

I am simply on medication to treat my migraines acutely with no other medication to be tried for prevention. I was suicidal last week and had a breakdown, and my doctor did not seem concerned about it. On day 6 of my Status Migraine they finally decided to get me in for treatment which lasted for all of 12 hours. I don't think they are living up to their titles and I think that's sad, because I had such hope in the fact that I found some doctors who knew what it was I was going through.

It makes me angry. I have been brushed aside, hollered at like I was a child, ignored, and just been given more drugs. If they do not know what to do with me, then why can't they tell me that?

Sorry for such a long post. Thanks for reading it, though. You guys are saints.

Oh Leeloo! The whole mess just goes on and on, doesn't it?!?! Sending tons of , happy thoughts, and prayers your way.

I'm really worried about you. Having suicidal thoughts is nothing to mess around with. Have you talked with your counselor about them? Please, please find help so you're not feeling this way! You're too important to us here--we need you to take good care of yourself both mentally and physically!!

I'm SO very glad to hear that you have that patient advocate on your side! That's exactly what you need--a more neutral 3rd party who can advise you about what's acceptable and unacceptable with your care.

It really is hard to navigate the whole clinical trial process. I know from experience with the stimulator study--and I haven't experienced any medical complications! I can't even imagine how tough it's been for you to make sense of it all.

I don't understand why your doctor isn't taking your pain more seriously! I think your instincts are definitely right--time to find a new doctor with some new ideas for your care.

Of course you need to follow the PFO path until you see what pans out. Anyone would want to know for sure if closure is possible. And if closure will help with the head pain. You'd be crazy NOT to explore it the whole way to the end!

But remember, if the PFO closure is not the answer, there is a doc and a treatment regimen that will help you. I remind myself of this all the time! We have to believe this--we just can't give up. Keep working hard, Leeloo. Be the best, most active patient you can be. You'll find something that will help. Have faith in that!

I'll be thinking of you!

jenny

What a complicated web! I'm sure finding out that St. Jude's is going to cough up the cash is a big relief. And well they should, after all that you've gone through. Any compensation is good in your case, I think.

I'm glad that you've got the patient advocate and the opinions of the out-of-town cardiologist. It's good to hear that there are actually some options as far as taking further steps, whether it ends up being something that can be fixed, or simply to have some closure in the form of answers. It's always the unknowing that's so maddening.

As for the local doc, my droolie sense is tingling over his comments and anger that you'd have the nerve to consult another doctor for another opinion. He seems rather insecure the way he acted. You have a right to get a second opinion. Even most insurance companies, who love to say no to things, say yes to second opinions. If he can't handle you seeking one, then it's probably for the best that you've looked elsewhere. You shouldn't have to be belittled just because you had the nerve to look after yourself and your health.

I'm sorry to hear some suicidal thoughs crept through again. I worry about you when you get so down like this. I know how complex and exasperating this ordeal has been for you, and I know you've got people there with you that care. I hope, since you're speaking of these feeling in the past tense that you're past them again. I also know we've posted this before, but just to make sure you can find it if you start feeling low again and are in need of the info, here's our link to the resources for If You Are In Crisis.

Umm, sounds like a doctor has some knots in her panites!! She is the one with the problem, not you. As your advocate said, it is YOUR health, your decisions, your body - not hers. This sounds like one more reason to find another Migraine specialist And I know that this is not exactly what you want to do now.

Go with your "gut," the doctor you feel, and know will help you the most. Sounds like you know what to do and sounds good. I just can't believe they have put you though this. Really not necessary.....hang in there. You will be just fine!!

Hey there,

I had a few more thoughts after reading over your post a few more times. You do realize, right, that if your PFO is taken care of, it still won't take care of Migraine disease. The PFO closeure will only prevent any Migraines that were triggered by the PFO. You'll still get Migraines from any other triggers you may have. These include perfume, weather changes, dehydration, certain foods and so on.

I just wanted to add my two (or may four) cents...

Hi Nancy,

Yes I know it's possible that this is not a cure for my migraines. However, I have to know before moving on whether this is a component or not and if it will cut down on the number of migraines I am having. I haven't found the right med combo in 3 years so I sometimes wonder if the PFO just makes it more difficult for the medications to get their digs in to work.

I think that the anecdotal stories for PFO closures are great, however I understand this is not cold hard science and the doctors and I have been around and around about it. I am not seeking closure necessarily for a "cure", but rather to know I did everything I could do and without having a huge ? hanging over my head. I was telling Cindy that I am stuck in limbo and I need to know if I should begin the disability application process and look into disability vocational training, because it is getting more and more difficult to work. I have missed a week of work plus I had to leave yesterday because I felt like the world was spinning for hours and when I got home I had to take an injection.

Certainly the Zanaflex I have helps my migraine meds immensely but I am aborting all the time instead of preventives because the docs are waiting on this PFO thing to blow over.

I now have the opinion of 7 cardiologists on my films (I had another TEE today) and the opinions are all conflicting. The cardio I saw today is of course the local guy and he is awesome. He said the PFO closure was seated right and that no bubbles passed, and his imaging guy said the same. They will be looking at the films with another imaging specialist this week or next. My opinion in Colorado says that the device was not closed all the way and that my previous films show blood shunting through the DEVICE and not the PFO, meaning the device was not put together right. He believes there is hope in getting in there with a cath to see what is going on. So right now I am EXTREMELY conflicted on what to do. I know my next step is to send him the newer films and see what he has to say. But if I am going to be on pain medication the rest of my life I need to prepare for it.

If the PFO is closed and after 3 bubble tests today they did not pass the septum, then why is my TCD coming back at a 5+? They cannot tell me where the shunting is coming from and they don't think it's a PAVM. What do I do? If there were no anomaly there then the TCD would not give those results. You do not get a false positive on a TCD. I don't want to go back to my docs and ask for ANOTHER TCD.

My feathers are pretty ruffled with my migraine doc situation. I really thought they were on my side but it seems not. I am surprised I have not heard from anyone this week but I am sure I will later. If I push to go to Colorado this time there may be resistance since the doc here said everything looked fine.

I am so tired of fighting these people. I realize that they like to be prudent and do what is best but I feel totally messed around with.

Leeloo - You are amazing just for getting out of bed each day! I get why you want to know for sure, and given what they've said, why you would want to explore what really happened with your device. I wish I had answers for you - I don't. You are very right that no-one should be yelling at you. I wish the doctors could all talk to each other and agree on what is going on. I hope you get some kind of answers!

- Megs

Hey girl, just catching up on all this stuff. First of all, I want you to know, next time you have thoughts like you did last week, please feel free to call me or come over or facebook me or whatever. Nothing like a sofa and a good sci fi or cheesy horror flick to make someone feel better.

Secondly, I kinda feel your pain about the migraine docs, that is if we are talking about the same docs. I haven't gotten a whole lot of help from them myself lately. Maybe they have taken on more patients than they can handle? I dunno, but its a little silly. They called me in a prescription with no instruction as to whether or not to keep taking my other meds and when I called to ask the response I got was "I assumed you knew that." Whatever.

You have been through a long and horrible ordeal and I am so sorry. Maybe I will make you a cake every time you have to have another procedure done.

Hi there,

Your situation kind of sounds like mine with my cervical spine fusion, but not exacty. It is such a difficult process, finally making the decision to have surgery, get the implant - in my case a titanium bar with six screws, and new discs - then have most all of the levels fuse perfectly, but not quite - and still be in pain.

It totally stinks, is overwhelming and exhausting. While I was thinking about you and what "I" would do, here are some thoughts if I may: I would take a general "tally" of how many tests/docs are on the 'closed/it's ok' side and then how many are on the it 'needs to be re-whatever' side? Doing this on paper would give me a clear idea and a better picture of what to do. Then I would go with my gut, of course taking into account all the info the doctors have given me about my heart, forget my Migraines. I would (remember this is me talking) see what impact doing or not doing surgery (like a pro or con list)would have on my heart alone, not Migraines. Then I would go from there, does that make sense? This is exacty the way I handled it with my fusion - less four doctors.

Again, as far as the Migraine specialist go - remember the old saying around here "if your doctors not listenting fire his sorry butt!!" Enough said about that!!

Believe me, I do understand about feeling totally messed around with. I am kinda of going through this with another new flipping doctor. Not head related, but I feel like if I have to defend my 1280 ANA test to her one more time, I'm gonna puck!! What, like I made my ANA antibodies jump form 160 to 1280 HELLO....I'm good, but not that good

Hang in there sweetie....

Leeloo,

How are you today?

Hi nancy,

I have actually had a few good days this week. Then a low front moved in and that was it.

I had another TEE last week. The cardio here says it's closed. However, there is shunting coming from someplace but they are not sure where, so we are talking about a pulmonary CT.

That's all the news I have for now. I was sleeping pretty well those few days I was OK but now I am back to insomnia central. Sigh.

Insomnia bites. Sigh. Hope you get back to sleeping better soon.

quote:

Originally posted by Leeloo:
I was sleeping pretty well those few days I was OK but now I am back to insomnia central. Sigh.

Leeloo,
I wish I had answers for you. All I have is hope for the future. And the sure knowledge that we are all pulling for you.

Maybe someone will drop the right magic in your Trick or Treat bag tonight?

Rebecca, The Island Mama