Deep Vein Thrombosis - Ugh..

[Faithful1990]

First I want to thank everyone here and especially Dr. Wise and the nurses. Because of this site and the consistent responses regarding DVT, I was pretty sure what was going on with my son (18 yrs old. T-12, 11 1/2 months post).

Last night I noticed his right calf was extremely swollen and warm. My first thoughts thought was DVT, so I came here to CC and searched for wisdom. I read over a few of the related threads and consistantly, the nurses and everyone instructed not to hesitate and seek medical attention immediately. So, armed with information from CC, we loaded up and headed to the ER. After a Doppler ultrasound, it was confirmed, he has a large formation in his right thigh. They said it was large, but we caught it early. He was admitted and started on blood thinners immediately. He is also scheduled to have surgery to place a filter in about an hour.

I'm a nervous wreck about the surgery and blood thinners, but wanted to tell you how much more confident I felt coming into the ER armed with information. It's amazing how little nurses and doctors know about SCI and all it's ugly secondary issues.
Thank you

[thehipcrip]

I'll keep your son and you in my thoughts. So glad you were able to catch it early and that he his getting the intervention and treatment he needs to be well. This site, and the medical expertise it provides, really are life savers!

[MSWIFE1]

I caught David's too a few years back with help from this site. Lots of valuable information here. The blood thinners however caused him to bleed out internally and he had to have a couple pints of blood replaced too, so make sure they keep checking him. David had the Tulip Gunther Filter placed as well, now he teases about having to go in to get an oil change and filter. Good luck.

[gcblarsen]

Like you we are so glad we found CC.

Hang in there!

[SCI-Nurse]

Hi,

HOw fortunate your son is that you and he have sought help on this site. Youa re right, it is amazing the knowledge and experience this site offers for SCI. It is only through people being open and sharing their knowledge and experiences that others can truly gain.
Thank you for sharing your story and we wish him the best and a quick recovery!
Please keep us posted.

AAD

[Faithful1990]

They performed surgery to place the filter yesterday afternoon. They had to go through his jugular vein as the vein in his groin was blocked with the large clot. He's in a bit of pain and is extremely sore from laying in the hospital bed but he's on the road to recovery. He's also being released today, but will be on Lovenox injections and oral Coumadin (sp?). They will discontinue to the Lovenox injections when his blood levels are right.

This all S U C K S. It's not bad enough that he has SCI at such a young age, but to add all the secondary conditions really SUCKS.

[thehipcrip]

Yep, it does suck, Faithful. There's no two ways about it. It's so good that he has you on his side. You are, literally, a life saver for him.

As he continues taking the anti-coagulation meds, as he/you/his aides do his skin checks, keep a close watch out for bruising, abdominal swelling, and other signs that he is bleeding too easily. In that condition, even a small bump to the head could result in a very serious brain bleed. I can't emphasize strongly enough how important it is to make his doctors aware of and responsive to any suspected problems with bleeding ASAP.

My Mom's doctors had her on too high a dose of blood thinners, and failed to take her extensive bruising and internal bleeding (which required transfusions) seriously enough. She fainted one morning after vomiting while sitting in bed, and as she collapsed, she hit her head gently against the top of a double boiler that served as "the throw up pan" in our home. That small hit against the edge of that pretty light metal pan resulted in fatal brain bleeds, and she slipped into a coma and passed away that same night.

I'm sorry for relaying such a scary tale -- I just never want anyone else to go through something similar because a loved one was placed/kept on an inappropriate dose of blood thinners.

[crags]

i've been using full length sequential compression garments every nite for about 45 mins-1hr for about 11 years. helps immensely to maintain vascular and skin health. prob not recommended once you've had a clot, as it could pop it loose.

started while healthy, it can help prevent DVT

[Faithful1990]

Thank you all. We are thrilled to be home and do realize how serious this could have been. I am forever grateful to this site and its contributors. As I said, because of the information here, I felt armed and knowledgeable to point the ER in the right direction. Internally, however, I was hoping I was wrong.

HipCrip, I am sorry to hear of the loss of your mother and appreciate your concerns and words of caution. I will certainly share with my son. I am also ordering a bracelet tonight for him to wear stating he is taking anti-coagulants so that in the even of an emergency, cut, etc..

We had a very long discussion on the way home about all of this and how he knows his body better than anyone and how imperative it is to notify us (mom & dad) or his doctor of any physical changes regardless if he thinks they might be meaningless.

He's so young and it sucks that he had to go through all this mess at such a young age. I HATE SCI, WE NEED A CURE NOW!!!!!!!!!!

[Faithful1990]

Queston for those that have had a clot... how long did it take for the swelling to go down?

It's been 16 days since the onset of my son's clot formation and 14 days since they placed the filter. They have stopped the Lovenox injections and is taking 5mg. of Cumadin.

The affected leg (right) is still really, really swollen. Although he's not in any pain, it's disrupting the use of his HKAFO's as they don't fit with the swelling.
Thank you.