Son is asymptomatic with venous TOS
Posted , 6 users are following.
My 24-year old son was hospitalized two years ago with a blood clot near his right clavicle that had spread to his lungs. Since then he has been treated with blood thinners. About three months ago, he got a definitive diagnosis of venous TOS. His surgery to remove his top right rib is in five days with Dr Thompson in St Louis, whom we chose for his deep specialization in TOS surgery. However, two things are causing us to question if we should move forward with the surgery. The first is that my son has uncovered quite a lot of bad online reviews of Dr. Thompson, which totally contradict our personal experience of him and his reputation among top doctors. We learned from our research and consultations that other surgeons (at top hospitals like University of Chicago) might do a half dozen of these surgeries every year, whereas Dr. Thompson does 2-3 a week and it's all he does. So, trying to sort out if those posting had far more complicated cases, and / or whether it's the natural outcome that generally only disgruntled patients post on doctor review sites; the happy ones don't think about posting their experiences (not sure, just trying to sort that out). The second issue is the level of pain and the extremely long road to recovery we are reading about in this forum and others.
The reason we wanted the surgery is to get him off blood thinners. Otherwise, he has absolutely no symptoms and lives a normal life. As a mother, the blood thinners scare me because if he has a head injury, it could be catastrophic. Beyond that, it seems like a bad idea to be on a medication for the rest of your life.
Is there anyone on this forum with a similar history: blood clots caused by a rib but treated effectively with blood thinners? Has anyone researched the long-term effects of blood thinners who could share their opinion? And, finally, are their differences in post-surgery experiences between those who have venous TOS vs arterial or neurogenic?
Thanks in advance for any guidance you can provide.
0 likes, 19 replies
kathymonk rene8603
Posted
Hi Rene
I am from Canada and so I have no opinion with regards to the surgeon choice but I can respond on the other.
My 27 year old daughter had her surgery on September 2, 2016 and the recovery was intense! She had her first rib removed due a blood clot in her clavicle as well. It did not go to her lungs. She also was on blood thinners but was weaned from them to baby aspirin and then nothing. Then her symptoms came back and so had the surgery.
She is now back to work since mid October and doing pretty good. She still has discomfort but only after driving for long periods and after a long day at the office. She still goes for physio once a week and massage once a week. Massage works better for her then physio
Truthfully during her six weeks at home recovering, she did say a few times I should never have had the surgery but that was in her very painful moments.
Key for her was getting back on the good meds and sleeping pills for her recovery time. Hospital sent her home with extra strength Tylenol!! Her family doc prescribed the good meds. Both addictive but once her pills were gone the pain was too. So no problem there. She has had no meds since the second week of October.
I agree that people are more apt to rate experiences if they are not great. Which is too bad!
Not sure if you son lives on his own but I did end up living at my daughters for 2 weeks full time and then every other day visiting after work.
Blessings to you and your son as you go through this time!
Kathy
rene8603 kathymonk
Posted
Thank you so much, kathymonk. Very helpful. A follow-up question, if you don't mind. Prior to the clot in her clavical, did your daughter play a sport or engage in some other activity that would have caused repetitive stress on her arm or shoulder? My son did not, and it appears he is in the very rare group of people with venous TOS who get a clot based on the narrow passage alone; my understanding is that most get it from a combination of the narrow passage and the physical activity. Today, the only discomfort he feels is when he raises his arm over his head -- there is a very mild pressure sensation and the arm is somewhat quick to tire. He says he has to really concentrate to notice these symptoms.
Also, how much time passed from being weaned off blood thinners to getting another clot?
And yes, we live within a couple miles of our son (in Chicago)
. If he proceeds with the surgery, he will most likely move in with us for a short time so that we can take care of him.
Thank you again!
kathymonk rene8603
Posted
Hi Rene
Monica has for quite along time always felt a heaviness in her arm and some tingling, although she never told me this. Last year Father's Day weekend, my other daughter called me and said you need to take Monica to the doc cause her arm is purple and swollen. Silly me thought it was a bug bite. She had felt prior to that weekend the heaviness and achiness more intense for about 4 days prior to it turning purple and hard. Ended up in emerg and sure enough blood clot. Hers also was venous and only because of narrowing. She is not athletic
. I think she was off of blood thinners after the clot dissolved and then baby aspirin till January (give or take a bit here) and in July she was having a little swelling and the heaviness more intense again. She went to the clinic and they did an ultrasound which showed a thickening in her vein. Not a clot per se but a thickening. So she was back on blood thinners again and booked the surgery. She is still on blood thinners and will go to the thrombosis clinic in December with hopes of getting off of them.
Please ask questions anytime
rene8603 kathymonk
Posted
Thank you again kathymonk! I'm embarrassed to still have a follow-up question but I just learned something new that might have a bearing on things. My husband's work colleague was recently diagnosed with the same condition and will be getting surgery in a couple weeks. His surgeon is taking a different approach. 1) He will enter through the armpit to remove the rib and 2) he will NOT do any work on the veins as he believes it causes a lot of pain without, in his judgment, being medically necessary - at least in some cases. (Please bear in mind this is a bit thirdhand, but that's the jist of it.) Did your daughter have vein work done as well? My son's pre-op paperwork says surgical procedures include a relocation of his arm vein, plus angioplasty and neuroplasty.
kathymonk rene8603
Posted
Hi Rene
Monica's incision was in her neck just above her collar bone. Her surgeon said he prefers to do them there, and she really trusted him. He is chief of surgery at the hospital she had it done. Her incision is about 2 1/2 inches - 3 inches long and it looks good so far. She is starting to have that side of her collar bone show again. Takes awhile for the swelling to go down. But it's coming along. She had first rib removal and scaletonomy done. No vein work.
Not sure if you like to watch surgeries but I did watch them on YouTube. One in the neck and one under the arm. It made me feel good seeing what was being done and the different methods.
As far as after surgery pain, we never asked that question..is there different pain afterwards if you have surgery under the arm or above the collarbone.
Monica's surgeon was good except he really did not give her enough heads up with what she was or could experience afterwards. He said she would be back to work after 2 maybe 3 weeks. She was off for six. And unfortunately we didn't find this blog till after her surgery.
And well I guess we didnt ask the right questions about that either
Her chest pain was unbelievable especially at week 2-4. And the difficulty of being able to take good breaths. Be sure your son is aware that it maybe hard to get good breaths at first. She didn't know about that. It's not like you can't breathe it just hurts and it's shallower. That is normal
. It all comes back. They gave her oxygen in her nose her full hospital stay so she always felt like there was fresh air. Which by the way, Monica's surgery was on a Friday and she went home on the Sunday.
Hope that helps
lsurgeonpatient rene8603
Posted
Hi Renee,
You don't mention whether the bad reviews you read were about the quality of the surgery, the outcome or the way the patients were treated. Nor what type of TOS they had (venous, arterial or nuerogenic).
It is certainly true that you are safer in the hands of a surgeon who does a lot of this type of operation (a high volume operator).
I researched all the top TOS surgeons in the USA extensively before deciding where to have my 2 operations. Dr Thomson in St Louis is certainly one of the highest volume operators whcih would make him very experienced. However, I didn't choose him to do my surgery - not becaue of any negative reviews, but because I read that his service was like a production line and that one didn't really have much contact with him, as he has quite a large team, making the treatment less personal.
I chose Dr Hugh Gelabert in UCLA as he is also a high volume operator and very experienced. I read from reports online that he was kind and caring and that is what I valued, in addition to his expertise. He is a vascular surgeon so any work that may or may not be necessary on the vein is well within his skill set. He operates through the arm pit which leaves a really neat scar. He takes out the WHOLE of the first rib making any recurrence unlikely.
Something else to mention is that he has special interest of TOS in children.
I always thinks it's worth having a SECOND OPINION before one has an operation, rather than wishing one had, afterwards.
I didn't have any vein work done as I had neurogenic TOS. MY operations were in March 2014, and I am still about 6 months away from my final expected recovery.
I have NO REGRETS about having had my operations and still feel it is the best thing I could have done, and that I have the best possible outcome as I believe I chose the right surgeon for me.
Good luck.
rene8603 lsurgeonpatient
Posted
Thank you lsurgeonpatient! Very helpful, especially your personal experience and the recommendation of UCLA / Dr Gelabert.
We met with Dr. Thompson and, frankly, loved everything about him: extremely knowledgeable, kind, patient, not the least bit arrogant, acted like my son was his only patient for the day. Because he came highly recommended by other doctors, and we had such a great experience at our consultation, and other vascular surgeons we consulted were far less impressive, our 'due diligence' essentially stopped at that point. But as the surgery date approached, my son began researching again in order to understand what his recovery will be like. And that's when we came across the negative reviews, specifically unresolved long-term pain after his surgeries (majority of those who posted, but as I said often those who post are the unhappy ones). But it's impossible to know if those individuals' cases were completely different from my son's (they don't specify) or if, frankly, some of the negative reviews are duplicates under different names by the same agitated patient. Then our search widened and we came across voluminous forum discussions from patients of other surgeons about their bad outcomes. And, finally, I read on Medscape an academic study of TOS surgery outcomes that was pretty abysmal. So, all of that kind of stopped us in our tracks.
The thing that has been hardest to suss out is this: of the patients that reported terrible outcomes, which had been experiencing great pain before their surgeries and which were pain-free, like my son, and only getting the surgery in order to get off a lifetime of blood thinners.
Thanks again, and best wishes on your final 6 months of recovery.
lsurgeonpatient rene8603
Posted
You asked about blood thinners - well, I would say that very long term blood thinners for a 24 year old is no life, really. Is it?
Pain before surgery is usually the neurogenic TOS. Pain after surgery can come from the actual surgery itself ( the tissue manipulation and cutting and even stretching of the nerves) - which is shortlived (6-8weeks) or longer from muscle spasms as the relieved nerves are firing up the muscles again (up to 3 years). Some patients even experience permanent pain (from damaged nerves and scar tissue sticking to the nerves).
I tried to put it in perspective as a patient and as a mother. Having had both sides operated myself, how would I react if one of my children, in their 20's, needed this operation ? I would have no hesitation in getting them to have it seen to asap. I hope this helps.
Good luck.
rene8603 lsurgeonpatient
Posted
Re: blood thinners, yes, totally agree and that was the reason we started down this path. I feel like we are a little better schooled now on different surgical approaches and have surfaced other surgeons and specialists to consult. Since my son's surgery isn't medically urgent, and he has no pain and miniscule risk of blood clots while on Xarelto, we are going to take a little more time before re-committing to the surgery. Thanks again.
ihavenonickname rene8603
Posted
Tamar Braxton went through this same ordeal just last year...that is why she dropped oit of Dancing With the Stars.
As to the surgeon, check his license...it will indicate any grievances and or lawsuits.
Kind regards
judith
rene8603 ihavenonickname
Posted
ihavenonickname rene8603
Posted
How is your son doing?
kind regards
judith
dce4165 rene8603
Posted
I am 5 weeks post op after having my top right rib removed after being diagnosed with veinous TOS. I began showing symptoms when my right arm began to swell and change colors. To make a long story short, I went to Dr. Lum at Johns Hopkins. The success rate with patients who have veinous are much higher than the others. In my case, the surgery went well. I went back for a veinogram a week later where they ballooned the vein clearing the clot but it has since reformed because my vein recoiled. I was told to stay on blood thinners for 6 more months. Anyways... I have also looked at Dr. Thompson and think he is a pretty safe bet. I went to Hopkins for the same reason you are seeing him. I would rather someone who operates on this 2 - 3 times a week instead of a dozen times in their career. My recovery has gone well. I was back at work 10 days post op. Feel free to ask me any questions. Good luck to you guys. I am sure your son will be fine.
rene8603 dce4165
Posted
Thank you, dce4165. That is incredibly helpful. Did the surgeon go in from your front where your clavicle is or under your arm? And did you have vein work done? I'm at work now without access to my son's pre-surgery paperwork, but several procedures were planned including an angioplasty. Others had slightly different names. I'm asking in case this has a bearing on recovery. Really appreciate you sharing your story. And very glad to hear things are going well for you.
dce4165 rene8603
Posted
He went under my armpit. Following the rib resection, he went into my vein 2 weeks later. He did an angioplasty but my vein recoiled within a day. It just didn't hold. That is not very common but it happened with me. My collateral veins are working so hopefully things should be ok. They are hoping my sub clavian vein will open back up within the next few months on blood thinners. Where are they going in on him? Under armpit or clavicle ? Like I said, I am only 5 weeks post op. I had many questions like u have days prior to my procedure. I will do my best to answer any questions I have. If you or your son need or want to speak direct, we can figure something out. It sounds like he's in good hands
rene8603 dce4165
Posted
The surgoen's plan is to make two incisions near his clavical and to do all work at once. We decided last week to postpone the surgery due to these unresolved questions, plus a sudden death in the family. We will likely meet with other surgeons for a second opinion on surgical approach now that we are learning about different ways of handling it. Just want to make sure we have done full due diligence. Thanks again, very much appreciate your responsiveness.