Hi there. My 10 year old son was recently diagnosed with venous TOS. After some online research, I came across Dr. Freischlag's name and put in an appointment request. Because of his age, she saw him immediately and we went to Hopkins. After more tests, she said he definately needed surgery. He is the youngest person she has ever treated. We are worried about the rib resection surgery and wondering how others have gotten along. If anyone can offer any words of encouragement about any of this and Dr. Freischlag, I would greatly appreciate it. This is all a bit overwhelming for my family.
Thanks in advance.

I am so sorry for the ordeal you must be going through. I have had TOS since 1999. I am also the mother of 4 children and would not want any child to go through this. My children are 17, 15, 12 and almost 5 (next week).

I did have surgery which, for me was very successful. But, I did not have the same type of TOS. Mine is nerve related. I do not know medical information, others here can help more. I know from posting, everyone is different. Some have had great success, others not. I reinjured myself after surgery. I had been 100% better. But, as I said mine was different and each case is different. Please take advantage of all the people here and their knowledge. Ask as many questions as you can. Everyone is more than helpful and very understanding.

Best of luck, Linda

Dr. Julie Freischlag.........I've heard good things about her!!

Dear Holhar,

Does your little boy have cervical ribs? That situation appears to result in good surgical results. If you would like a second opinion, try Dr. Michele Cerino (a Man), at Harbor Hospital in Baltimore. He is a Thoracic Surgeon, very through, kind and experienced. He should be listed in the physician reference list at the top of this forum.

It never hurts to have a second opinion. I personally know nothing about Dr. Freischlag, other than she is realtively new to the East Coast. Some posters from California seem to have had good experiences with her.

When I was seen at Johns Hopkins, it was by a male neurologist. In his case, I would have chosen Dr. Cerino, hands down, for many reasons. If I were to consider surgery now, I would look at a second opinion from Dr. Freishlag only because a second opinion is really paramount for this type of surgery. Also, there are so few very experienced surgeons in this specialty.

There are several TOS specialists who are in the Baltimore area. TOS really needs a 'team' of physicians in various areas of expertise for the big picture and through diagnosis.

PM me if you have any questions for me. I hope your little boy comes through this healthy, happy, and good as new. It sounds as though he may be having vascular issues if there is urgency here.

This forum is a great place for feedback, as there are so many variations of, and experiences with, TOS.

Warmly,
Anne

I am 48, but when I was in Denver having my surgery, it was with a younger woman who was about 28 (est.) She had a rib removed, and scalenectomy. She felt GREAT by the day after, and she was out and actually got dressed and went out for dinner on day 3.

I did not have any complications from the surgery itself, but I had some due to medication issues (my work comp would not approve the meds I had been on, so it was sort of a forced reduction immediately after surgery, and, I had also developed fibromyalgia and apparently the surgery really flared it up.

I have neurogenic TOS, and I can say that the actual surgery opened up my "area" so that I had almost no headaches for a year, better circulation, and it put my RSD into remission.

Now, I am very, very optimistic that for your son's condition, ("type" of TOS), that this surgery would be very beneficial for him.

But, no one can make these decisions or predictions, because of the nature of anesthesia, etc. I researched my doctors and interviewed four total, (two in Denver), and I chose Dr. Annest of Denver. I place a lot of faith in the Denver docs. (Not to say that I have not heard good feedback on your doctor also.)

Whenever someone is going into surgery, we post it here, and then there are many of us here who pray for that person. If you feel like posting at such a time, I know that we would definitely gather around to pray and hope for a great outcome and the safety of your sweet child.

God bless you and the decisions you are facing. I can't imagine.

I have a friend whose 14yo daughter had to have the surgery by Dr Ahn in Los Angeles. She also had the veinous type- with the hand that went suddenly purple. She came through the surgery after about a week of downtime, and you'd never know there was anything wrong with her now.

I am sure you are scared, as anyone would be when having their child go through surgery. I was scared witless myself, but the experience wasn't really too big of a deal, a week or so of severe pain, then slowly it got better, and now i hardly notice. (i had surgery on left sid in may and right side in august)

Veinous type can be more directly life threatening (hence the need for surgery), but not nearly as long term debilitating as Nerve compression type.



I am sure your little boy will be in good hands. Dr Freigschlag came from UCLA where Dr Ahn and several other world experts worked on the development of TOS protocol. I second the idea of a second opinion, but I would not fear going to see Dr Frieschlag.

best of luck to you and your little boy, please give him a big hug for us.

Johanna

Wow! I can only imagine how hard this is for you and the family. Being a mom of a 12 year old boy, I dont even really even know what to say...

I had venous TOS and had rib resection surgery (6 months ago in Denver) that went very well. I have not heard of Dr. Freischlag, but it sounds like your son is in good hands. Youth will probably play a big part in this, kids heal so quickly!

Please know that you, your son and the rest of your family will be in our thoughts and prayers.

I just wanted to say thank you to everyone who has responded so far. It feels good to know that there are others out there. After episodes of severe swelling in his right arm along with it turning a horrible shade of blue/purple and many doctors, we finally received a diagnosis from a local doctor and a recommendation for Dr. Freischlag from Penn State Hershey Med Center. Dr. F. found he has malformed first ribs on both sides. She believes that only the right one needs to be removed, as it is the only one giving him trouble. It has been a really trying last few months. He has severe pain in his arm and has had to give up his one love, competitive swimming. Dr. F believes he will be able to compete after surgery and recovery, but it is very difficult dealing with this in my 10 year old son. He was very depressed and we were all terrified of blood clots, etc. Thank you for everything. I'll be sure to keep you up to date.

Keep everyone posted. My daughter is a competitive swimmer and I know that the season starts now. My TOS is different but from what I see posted, the outcome is very good with your son's type. Doctor's know best but I know there is a lot of knowledge on this site. As a mom and a fellow TOS'r I'm thinking of you and have you and your son in my thoughts and prayers.

Linda

Hi Holhar,
\I had venous tos as well and had rib ressection and scalenectomy due to 80% occlusion in my right side subclavian vein. It was resolved with the surgery....good once fixed but MUST be fixed huge risk for clots...not to worry you but this is something you don't want to wait on. My hand and arm would go massive fingers like sausages and purple...was hellish and the weight of it!!! so hope your surgeon is great....so far from posts I have read you are in good hands. Does your son play baseball????? This can contribute to tos as well. The question to ask is what is causing the compresison. Is it cervical ribs? Is it muscles that are over developed or some other congenital muscle formation/??? so this is important to know or try to find out...I hope you have had chest xrays done and mri's prior to surgery....have they done a veinogram to see the compression???

just suggestions and thoughts....thanks for joining us and looking for support and help.

AHH I just reread and saw what you posted about the swimming and the muscles in his trapezius will be enlarged as well as all arm chest and neck muscles all of these when enlarged and probably super fit so this can contribute to compression as well.....sorry sometimes I don't see things until I look twice......

Take care and keep posting we are always happy to help.
You will be in my prayers.
love and hugs,
Victoria