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dwr37 11-07-2013 01:06 PM

Quote:

Originally Posted by josepentia (Post 1027481)
DWR37- Hmm that would be interesting! My surgeon is Dr. Michael Lavor- same as your daughters?

No. Not the same. After looking around the site I found you had your first surgery before my child's surgeon moved to AZ.

I couldn't edit or delete my post. I'm not sure if it is possible on this site or if I just don't know how.

curby 11-07-2013 08:51 PM

Quote:

Originally Posted by josepentia (Post 1027481)
DWR37- Hmm that would be interesting! My surgeon is Dr. Michael Lavor- same as your daughters?

Curby- yes it sounds like surgery is in your future!! I'm sorry that I can't offer input on any Philly docs. Maybe take a look at one of the stickys on the main TOS page of surgeons listed? Or create a new post entirely asking for recommendations near PA?

Yep, surgery is in the future...the near future. Just hunting up some docs and trying to learn what is important to ask/know about surgery, approaches, etc. My son is so relieved to have a diagnosis, and so am I.

Wondering...you had transaxillary approach, right? Was your first rib removed completely to the sternum, or only partially? I am waiting for a call from his potential surgeon to ask some specific questions about the plan of attack. Apparently the details really matter to long term success, like having a complete rib removal, and having scalenes removed and not just cut? Am I understanding that right? Or is that just the theory of some docs (that those criteria are necessary to long term success, or maybe they are just applicable to n/tos?)...I feel like I have so much to learn and so little time...we are told not to dally too long or the situation will become complicated with a blood clot.

Emilina 11-07-2013 10:22 PM

I also had transaxillary approach and I can tell you what my surgon said when I asked him these questions...

Only a piece of my rib was removed and scalenes were detached but left in. He felt it wasn't necessary to do anything more invasive. It seems like it varies from doc to doc and depends on what is being affected by the TOS.

Personally I was happy with transax approach because no large muscles were cut which was a concern for me. I don't know if this will help but I found this an interesting read...
Advanced Therapy in Thoracic Surgery

The page I'm pasting describes exactly what happens during surgery and there is a lot of great info in the whole book though it is A LOT to read. Personally this kind of info helps me. I do know how you feel as I went into my surgery pretty much blind!

Quote:

Originally Posted by curby (Post 1027589)
Yep, surgery is in the future...the near future. Just hunting up some docs and trying to learn what is important to ask/know about surgery, approaches, etc. My son is so relieved to have a diagnosis, and so am I.

Wondering...you had transaxillary approach, right? Was your first rib removed completely to the sternum, or only partially? I am waiting for a call from his potential surgeon to ask some specific questions about the plan of attack. Apparently the details really matter to long term success, like having a complete rib removal, and having scalenes removed and not just cut? Am I understanding that right? Or is that just the theory of some docs (that those criteria are necessary to long term success, or maybe they are just applicable to n/tos?)...I feel like I have so much to learn and so little time...we are told not to dally too long or the situation will become complicated with a blood clot.


dwr37 11-07-2013 10:58 PM

Quote:

Originally Posted by curby (Post 1027589)
.we are told not to dally too long or the situation will become complicated with a blood clot.

A/TOS and V/TOS bilaterally. We were told we could wait indefinitely as long as the arms stay down by my child's side. There was no blood restriction in that position, but it makes life near impossible to live life to the fullest. We were told though that if a blood clot does happen or vascular damage is done, it would be a lifetime of medical follow-up. So, we weren't rushed into a decision because of the diagnosis. We were just told that caution had to be take with movement. Of course, my child woke up every morning with the arms over the head.

Does your teen have restriction in all positions?

curby 11-08-2013 12:00 AM

Quote:

Originally Posted by dwr37 (Post 1027618)
A/TOS and V/TOS bilaterally. We were told we could wait indefinitely as long as the arms stay down by my child's side. There was no blood restriction in that position, but it makes life near impossible to live life to the fullest. We were told though that if a blood clot does happen or vascular damage is done, it would be a lifetime of medical follow-up. So, we weren't rushed into a decision because of the diagnosis. We were just told that caution had to be take with movement. Of course, my child woke up every morning with the arms over the head.

Does your teen have restriction in all positions?

I am getting a second opinion as soon as I can find a suitable doc in my area for that. I do feel rushed by the first, diagnosing doc. That is one of the things I want a second opinion about, the rush or not. Restrictions are keep arms down, no lifting or carrying weight like heavy books for school, watch for signs of clot. But kids have the understandable invincibility syndrome and I catch him laying on the sofa with an arm thrown across his head, sleeping overhead, he has to raise them for daily stuff like shampooing hair.

Was your child symptomatic? Did yours have surgery? Mine has been symptomatic for a year and the pain is limiting even regular activity. His venous involvement is what concerns the doc because his body has created a workaround with other veins that can't handle the load, which is what is causing the symptoms, pain, as best as I am understanding it. The dr says the artery is tougher and not of immediate pressing concern.

curby 11-08-2013 12:12 AM

Quote:

Originally Posted by Emilina (Post 1027608)
I also had transaxillary approach and I can tell you what my surgon said when I asked him these questions...

Only a piece of my rib was removed and scalenes were detached but left in. He felt it wasn't necessary to do anything more invasive. It seems like it varies from doc to doc and depends on what is being affected by the TOS.

Personally I was happy with transax approach because no large muscles were cut which was a concern for me. I don't know if this will help but I found this an interesting read...

The page I'm pasting describes exactly what happens during surgery and there is a lot of great info in the whole book though it is A LOT to read. Personally this kind of info helps me. I do know how you feel as I went into my surgery pretty much blind!

Thanks for the link! Sometimes I think I would be better of going into this blind, lol. It's funny because if I was the patient, I'd be far less questioning than I am being and would probably just go into it without a second thought. But it's my kid. Though he is nearly technically an adult, I am still responsible for the decision, choice of surgeon, and so forth and I don't want to do wrong for him. I will be reading more of your link.

dwr37 11-08-2013 07:06 AM

Quote:

Originally Posted by curby (Post 1027625)
Was your child symptomatic? Did yours have surgery?

I sent you a private message. You can find it at the top right where your user id is when you logged on.


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