Back from Hopkins - to operate or not to operate, that is the question

[BarbJean]

Hi Friends, We got back from Johns Hopkins a little while ago. On Thursday, we saw Colin's geneticist in Philadelphia at UPenn Hospital. Colin had an MRA done there. Basically, he told us that Colin is right on the borderline as far as having the repair done. I asked him if I would be able to worry less about blows to the chest, etc if the repair was done and he said yes. He told Colin he should not do any exercise more strenuous than brisk walking at this point. He said he would concur with whatever Dr. Cameron at Hopkins felt was the best course of treatment. I got a copy of the study to bring to Hopkins. On Monday morning, the genetic counselor sent me the radiology report in a file so I could bring that too. To my chagrin, it said on the report that they also saw a "subpleural T2hyperintense, T1hypointense lesion on the right. Differential diagnosis includes a cystic structure or nerve sheath tumor". Well, of course, I was sick over it. I still have no answers so I am imagining the worst. My daughter was evaluated in the past for Neurofibromatosis, so I am worrying that we actually all have it and he has a tumor. I just feel like my luck has not been the greatest with genetics. And, the big C has always been a major fear for me. The geneticist is going to review the study again and get back to me, but I can't get it off my mind.
Anyway, back to the story. We saw Dr. Cameron at Hopkins. He was so gentle and kind and I just know he is the person we want holding Colin's heart in his hands. He could not really tell us it is absolutely necessary to do it right now. The aorta is at about 4.6 at the root. He felt the risk of dissection and surgery were about equal right now. He gave us the pros and cons of doing it now. I am trying to stress to Colin what he said about having control right now of who, where and when it is done which he would not have in the event of a dissection. So, both my husband and I want it done now, but he is almost 25. Shouldn't he make the decision? I think he wants to wait now because he is worried about what he would do if he gets a teaching job for September. The doctor told him if he had it done soon, he could probably teach in September. I feel like if I put too much pressure on him to say yes to it, he may just get his back up. I told him today, on the drive home, that it is a big decision and I would try not to nag him, but he has to come to a conclusion soon. I am worried that if he gets a job, he will not be offered a great insurance plan like we have now. If he has a job with insurance, he would not be eligible to stay on our policy. I told him I am worried about him only having the opportunity to go with an HMO and not being able to have the surgery done where we want it.
So, I don't feel much better than before. In fact, this lesion thing has me wanting to drink a few glasses of wine tonite, or maybe eating a gallon of ice cream. I will let you know if and when Colin makes his decision. I think it is easier when kids are little and you can make their decisions for them.

 

[Luana]

Barb,
I think I have to agree with you on doing it now, and I think the best point is the insurance consideration. If he does it now, he should be fine by fall. Here's wishing you and your family all the best with this.

 

[vtbecca]

I would definitely be inclined to do it now, especially with the possible insurance issues. Also, if he does get a teaching job in the fall what if he worsens then? Probably better to do it now before he starts working, then later when he would have to take off a lot of time to recover.

I sympathize with the tumor thing, so much! I have had 2 growths removed and one biopsied. Thankfully all not cancer. My youngest son is 4 and has a very large lymph node that we are getting removed in July. It's huge, and been there for a while. We thought it was an infection that never went away. I try not to think about it too much, and I know it's not likely cancer, but 2 of our 3 boys have rare diseases. Statistics are pretty meaningless to me.

I hope Colin can come to a good decision, one that you will agree with too, and I really hope his growth is nothing significant. It sounds like he has enough to deal with!

Becca

 

[malibu82]

that has to be really difficult. if i were him, i would get it over sooner rather then later. he doesn't want to start that teaching job then have to have surgery in the middle of the school year or when it becomes a must! i think if he got it done in the next month, he would be okay to teach this september.....good luck!

 

[Mentu]

Barb, I agree, it is hard to wait for someone else to make a decision that in the past you would made for them. Besides the issue of health insurance, however, surgery in June would mean he should be back on a normal schedule by the end of August if not before then. As Becca pointed out, it would be a bad professional move to start a new job only to find that in the first year it was necessary to take time off. With so many teachers out of work, it would be easier to replace him than to wait for him to recover. Surgery can be done more safely now. When things get worse there is more risk. I think you are right not to badger him. Perhaps you could all sit together and simply write down the pros and cons for consideration.

Larry

 

[BarbJean]

Thanks all for your input. I passed onto Colin the idea that if he did not have it done now, he may end up having to take time off during a school year. That seemed to click with him. He has the last part of his teacher certification test scheduled for July 17th and I suggested we try for the week after that. He seemed to think that would be good. Larry, I told him this morning he should do a pros and cons chart, but you are right, I should do it with him. Maybe tomorrow, since I am so beat I am hitting the sack.

 

[Maryka]

I would, of course, say do it now. You have not mentioned what kind of teacher he wishes to become. It would seem that he should not consider being a Physical Education teacher, of course, but teaching English or History or something like that should be fine. I once (while I just had the aneurysm) was turned away from a Special Education program because, as I was informed well into the process, I WOULD eventually be hit (and probably in the chest) by a Special Education student. They could not, in good conscience, put me at that much risk. So, aside from PE or Special Ed, he should do just fine.

As for health insurance, he should work for a big school system where there is a big pool of people. and a better chance of getting excellent health insurance. Small private schools have small and sometimes bad health insurance plans. I know all of this from my own personal experience as a teacher.

 

[cbdheartman]

BarbJean,

I think we conversed via messages. I would do it now. I speak as one who had a very public hemming and hawing on this board a year ago. I went ahead and had Dr. Cameron operate on me and I am so thankful I did. This isn't an easy decision and if Colin wants to talk to me I think you have my info. My guess is that he could be ready to teach if he has the surgery now. I returned to full-time work about 7 or 8 weeks post surgery. I was auditing a class at an institute at Catholic University in early September just over 2 weeks post-surgery. So I think he probably could do it.

But I would also consider the stress of a new job. I am not sure I would want to do that with an aneurysm especially given the restrictions that Dr. Cameron said he should be under. I can tell you that peace of mind is a huge thing. And I have that now.

 

[Lynlw]

BarbJean, I'm sorry you have so many choices to make. It can be easier when you don't really have to decide when but just are told you need surgery now. If you don't mind what was Colins aortic root last time it was measured?
Oh by the way, Justin has a MRI/MRA atUofP last week too, its a shame it couldn't have been the same day

 

[BarbJean]

Phew!!!! Colin made the decision this morning to have it done. He has a teacher certification exam to take on July 17th , so we are hoping for the following week if that works for Dr. Cameron. I am relieved, but become more frightened.

Lyn- too bad we could not have met up there. We waited an hour and a half . Hope you don't wait that long. Good luck with it! Colin's root measured 4.19 a year ago. The last echo showed it to be 4.6, the most growth he has had in a year. I know alot of people wait until 5, but since we have nobody else with Marfan in the family, it can't be predicted at what diameter he might dissect.

Maryka, Colin will be a music teacher. My concern would be the lifting and moving of marimbas, vibes and drums. He wants so much to be a DJ this summer, but I told him he cannot be lugging that heavy equipment around. I am hoping for a larger district with good insurance. I retired from a large district, Saratoga Springs, and we had great benefits. Still do. What and where did , or do you teach?

Conor, it is so good to hear you say you have peace of mind now. I know that will be the case for me.

 

[Luana]

Barb,
I am so glad to hear this! Having a great surgeon is half the battle, maybe even more. What a smart kid you have!