Left UEDVT/ Right UEDVT due to bilateral TOS - Dr. Daniel Clair
 

Hi I am new and did a search for Dr Daniel Clair. I could only find one other person on here that had mentioned him. He is with Cleveland Clinic. I am scheduled to have surgery on March 20th with him. In short my history is I was developed a blood clot in my right arm in July of last year, I was put on all the necessary blood thinners and such and while I was completely therapeutic on my coumadin developed another blood clot but this time in my left arm in August. Because I "broke through" on the coumadin the doctors (which like everyone I have seen my share of vascular surgeons) will only allow me to take Lovenox shots (2x daily and have been since early August :( ) My symptoms are completely related to the blood clots at this time. I do not nor have not seemed to have any neuro issues with either arm. The only time I have pain is when I am not on time with my shots. Dr Clair took one look at all my test results (have had them all) and said surgery was a MUST for both right and left side. I have read horrible stories about this surgery and must say I am very scared. I am not a young thing (late 40's) but I am very active. Run and exercise pretty much daily and worried how all of this will effect my quality of life. Any information/insight anyone could pass on regarding surgery based on VTOS due to blood clots and or Dr. Clair would be so appreciated!! Also the Dr. Office said that I would only spend one night in the hospital (the day of surgery) and go home the next day. Is this actually possible? I live 6 hours a way from the hospital and concerned about driving home the next day as well as being that far from there if anything were to happen.

Are you having both sides done at once? I had one side done and spent 3 nights in the hospital (I was told to expect 4 nights in the hospital but got to go home early). If you are having both sides operated on, spending only one night in the hospital is pretty optimistic/ambitious.

One other forum member (Livelovetrust) recently had surgery on both sides. She may be able to weigh in on hospital stay, etc. I've read about people here who've had surgery far from their homes. They sometimes spend several days following discharge from the hospital in nearby hotels.

Your questions and concerns are very reasonable and rational. Hopefully the surgeon or his staff can provide you with information so you can prepare for the surgery.

Good luck.

Kelly

I am only having the right side done on the 20th. The left side is scheduled for May 15th. The doctor said I would need the two months to recover from the first one. I am praying that the right (first) side goes ok as I don't want to spend the two months of recovery dreading the next up coming surgery (left side) I have been told I have only two choices, 1) surgery or 2) say on lovenox the rest of my life. For those who have been on the lovenox shots for an extended period of time may realize just how awful it would be to have to take the shots the rest of your life, seven months of them have already been enough for me.

People in your position with VTOS and no neuro symptoms have a greater rate of recovery than those with NTOS. It is often just a matter of unkinking the hose and healing up from the surgery and you can return to normal life.

All surgery is painful and can be scary but I will say that my rib resection surgeries were each much less painfull than my cervical spinal fusion.

Good luck to you!

Thank you both so much for responding to my post and for the encouraging words. I also wanted to mention that this past November (the 21st to be exact) I had a partial left lung removal. While I was having my MRV's done for the TOS the doctor found a mass on my lung. I am a cancer survivor of 8 years now and it was suspected that the mass was the cancer returning. I was very blessed as the mass was not cancer!!! The surgeon called it a thoracotomy removal of partial lung (which is the name of the type of incision). My Vascular Surgeon stated that particular surgery is 100 times worse than the rib resection. I can only hope that he is correct and that I will be bouncing back to normal as quick as I did from that (I was back to running 3 weeks post surgery)!

I am assuming they have done all the appropriate genetic testing to make sure you don't have an underlying clotting issue? I have two genetic clotting problems and I am afraid that having this will cause a clot in the end. Mine is my nerves not the vein or the artery so they say. I will hold out my judgement until they look in there and tell me there is nothing else....LOL!

You have assumed correctly, to a certain point. I have had all genetic testing the doctors could safely do. There are two clotting disorders that can not be tested for while on blood thinners. I will have to be off thinners for 30 to 60 days in order for those tests to be accurate. At this time my doctor does not feel safe taking me off the meds due to the severity of my compression's in both arms. I have 100% blockage in both arms starting at a 90 degree elevation. I will be tested for both of these clotting factors after the second surgery in May.

Before my first clot I had absolutely no symptoms of TOS. I woke one day with my right arm 3 times larger than the other. My hand was so swollen that I had tiny blisters on it from the swelling. An ultrasound was ordered right away which is when the clot was discovered. The report stated that I already had an existing small clot in the same location (which I also hand no symptoms of) and that day there was a new larger clot forming.

I have been told that it is VERY RARE to have clots in both arms and the first thing the doctors blamed the clots on (because they hit one month apart) was a clotting disorder, than it was my cancer. It was not until they were both ruled out that I was given the diagnosis of VTOS.

Do try and press your doctors for a venous ultrasound of both arms to rule clots completely out. Especially if you have clotting factors! As I stated I didn't even know I had a small one before the large one hit. My family doctor was so worried before my diagnosis that she even ordered ultrasounds of my legs. Don't let anyone stop you from getting the answers you deserve. It took me going through a family doctor, 5 Vascular Surgeons, an Internal Medicine Dr, a Cardiologist and two Oncologists (different specialties) as well as reading for countless hours on this forum, to get all my answers. BTW it was my Gyno-Oncologist that suspected VTOS right after the first blood clot was discovered and encouraged me to not give up until I had all the answers.

Good luck to you on your TOS journey, as we all know this is not a fun journey but its forums like this that help us educate each other as well as the medical community.

Make sure you get tested after surgery. I have Factor V Leiden and MTHFR methylenetetrahydrofolate reductase......LOL what a mouth full! It runs rampid in my family. I have not had a clot yet but my mother has had a PE and a DVT and my grandmother we believe died from a Massive PE. Didn't have an autopsy. One of my daughters has Factor V and the other is homozygous for MTHFR. Probably in your case just venous tos but always best to know about these little bugger clotting issues especially if you have experienced a clot. Good luck with your surgery!!!!!! Keep us posted :)

Lipoprotein a
 

Make sure that you get tested for lipoprotein a as well. All of these are actually pretty common!!