Internal VM in thigh

sprtsgrl72 · #1 05-30-2006, 10:34 PM

I never had any symptoms until last July and I could barely walk with pain in my left thigh. I am 34 and have been very active in sports all my life and was playing 4-5 times a week at that time. They diagnosed it as a quad tear although I did not remember injuring it. I did physical therapy through the end of the year and it never got better. I finally had an MRI done in March. The initial MRI interpretation was an intramascular hemangioma but after going to a couple drs they said it is a venous malformation. I am still not sure what the difference is, can anyone help explain it to me?

I had sclerotherapy with the maximum amount of alcohol done about 2 weeks ago and my dr thinks that I will need maybe 1-2 more to relieve symptoms due to the size (I think it was about 14cm). Can anyone who has had sclerotherapy for internal VM's provide any insight into symptom relief and recurrence?

I also have had numbness down my left side (arm/hand, lower leg/foot) since last year as well. The dr has said that he does not think it is related because the VM does not appear to be near any nerves. They did an MRI of my shoulder, back, and brain and they came out fine. So far after schlerotherapy, the numbness appears to be the same. Has anyone had numbness associated with this, or is it most likely something completely different? They recommended I see a neurologist but I thought I would wait to see if it got better after surgery. I thought it was a big coincidence that the numbness is on the same side as the VM.

This is all new to me so I look forward to hearing from anyone who can add any insight into my situation, anyone who is familiar with internal VM's, sclerotherapy, numbness, etc. Thanks for reading!

missy · #2 05-30-2006, 11:40 PM

Sorry... had to move your post into the appropriate forum.

The difference between a hemangioma and a vm is that venous malformations can appear anytime in life, while hemangiomas are present in babies (although I hear all the time of people having mri's done and finding internal hemangiomas that their doctors tell them have been there since birth <<shrug>>).

Kristie can weigh in better than I about treatments.

When is your surgery?

Missy

sprtsgrl72 · #3 05-31-2006, 12:08 AM

Thanks for moving my post.

The dr did say it was probably there since birth. Which is why I was still confused about the difference.

I had surgery on may 17th, it will be 2 weeks tomorrow and I am just beginning to walk on one crutch. My experience with schlerotherapy has been very painful.

Thanks,
Kim

KristieinStMarysGA · #4 05-31-2006, 11:19 AM

Hi Kim,

I also have a "internal" VM, mine is throughout my left elbow/forearm it's deeply embedded in the muscle tissue and subcutaneous fat. Mine is also fairly large although I wasn't given the exact size. Mine has cause my VM arm to become slightly larger and thicker then the non VM arm. I was also told that mine was with me at birth but it didn't become symptomatic at all until about 8 or 9 years old and then went undiagnosed until Jan. of 2005. It was also said to be an intramusclar hemangioma, the actual term they used was canverous hemangioma. So I was set on a mission to find out all about what I had which led me to here and a few other sites, all were very helpful. I was then sent for MRIs,CT Scans and an angiogram/arteriogam. After that the interventional radiologist who did the angio/arterio said aside from the pain and swelling to just leave it be, as I couldn't have it removed without losing the function in my arm, or dying.
What I did was took all my medical records and sent them to a doctor who is highly recommended in the vascular anoamly world. And have since had 2 treatments of sclerotherapy with him. As for how it felt, it wasn't too bad we travelled out of state for treatment and the day I after treatment we went sightseeing, and I could tolerate the pain with a bit of motrin and didn't need the vicodin that was prescribed. The second treatment was a bit more painful and it caused more stiffness then the first did, and I can no longer totally bend my arm.
I did experience numbness, but that was prior to the first treatment when my arm was at it's worst!! I looked like I had a prosthetic arm as it was so swollen and waxy looking as the skin was strecthed beyond belief. And the numbness was from the pressue put on the nerves in the arm, which could also have been caused by the VM as well. I occasionally have tingling in the arm but I am not sure what is causing it. I also need more treatment but my job will not tolerate be leaving for 3-4 days every 6-8 weeks as that is the preferred time frame between treatments.

I hope I have answered your questions, and if you have any others post them and I will try to answer them as best as I can!

Good Luck!
Kristie

missy · #5 05-31-2006, 11:43 AM

Kristie,

I did not know you had gotten a possible diagnosis of KT!

Thanks for helping me out with this one!

Missy

PS... how's st. marys? I was thinking about my friend Marge there the other day... I wonder if she's still there?

KristieinStMarysGA · #6 05-31-2006, 09:50 PM

Missy,

A local doctor "swears" I have KT syndrome, but I lack the PWS but I do have the difference in size and thickness, so I don't know. I am not really worried about it as if I do have it, it's very very mild form of it.

St.Marys is okay, although a bit boring as usual!

Kristie

sprtsgrl72 · #7 06-03-2006, 12:59 AM

Kristie,
Thanks for sharing your story. I went back to the dr today and they said I am one of the few that is much worse after treatment than before. They put me on another round of steroids for the swelling and percocet. I have had other surgeries before where I did not even take the prescribed pain killers. They have scheduled a second round of schlerotherapy for June 21st.

Kim