Intramuscular Hemangioma in calf -19 y/o - Page 2 - Vascular Birthmarks Foundation Forum
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  #11  
Old 12-30-2011, 02:17 AM
christeneRN christeneRN is offline
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Talking IM Hemangioma in my left quad muscle

Hi. I just found this site so I thought I would see who out there may be able to answer a couple of questions...I was diagnosed with an intramuscular hemangioma in the head of my left quad muscle. my ortho surgeon felt this was incidental and that my pain was referred pain from my knee joint so he scoped it. Well.....I was right and it wasnt my arthritis. I can feel a hard lump/mass just above my knee to the right. i can't squat, can;t so any of my workouts at the gym and going up and down my stairs at home is very painful. I have a pretty high pain tolerance but this is limiting my daily activities. So i have seen the ortho oncologist who is waiting on me to decide if I want to have it resected....anyone out there had the surgery? If so any information you would share with me will be greatly appreciated. Nurses make the worst pateints! I could make the decision easily for someone else.....Thanks in advance to whoever responds
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  #12  
Old 12-30-2011, 12:46 PM
missy missy is offline
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Hi and welcome!

If you will look at http://birthmark.org/pdf/VBF%20Pamphlet.pdf and scroll down to the section on AVM's, you will find some information. Usually the treatment is a mixture of embolization and surgery. Can you feel your blood pressure in the mass above your knee?

You might have a better response if you start a new post under the AMV section of the forum ... more adults dealing with birthmarks there. Let me know if you'd like to and I can move it for you.

Missy
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  #13  
Old 01-28-2012, 06:52 PM
DavidinGermany DavidinGermany is offline
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Default "Blutschwann" or Hemangioma on back of right leg

I have had pain most of my life on the back of my right leg. After so many doctor visits, which have all resulted in various explanations for my pain, my last doctors visit to an OP named Dr. Storg who conducted a simply altra sound on the back of my leg found a cyst. I was told that I needed to go get some MRI's done. Well I did and MRI's found a nice sized, in German, Blutschwann, which is a Hemangioma. This Hemangioma in my leg is located in the soft tissue below my muscle and goes as deep as 8 to 10 centimeters. The Hemangioma is located directly behind my knee, where your leg bends. There are 2 main arteries in the vicinity. This post is very late as I'm scheduled for surgery on Monday. I'm a bit upset and maybe worried. I've lived with this for a very long time and while I do have pain that sometimes is very uncomfortable I can still walk and run. I'm worried that the end result will cause more problems then what I have now. I'm also stuck with the option of either having "regional anesthesia" which is basically having 2 needles stuck into my lower back to numb my lower half, which has it's own risks, or "general anesthesia" which is basically putting me into a deep sleep. General anesthesia will require me to have a tube inserted into my throat and a machine will help control my breathing. Both options don't seem to be anything to look forward too and I really can not make a decision. I'm really bothered by this whole thing and hope that anyone with any suggestions can help me feel less worried or shed some light onto this whole ordeal. I know that I may have not added all the details and if so please feel free to ask me any questions so I can help those who do not fully understand my situation understand..... thanks
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  #14  
Old 02-03-2012, 12:05 PM
Jtest123 Jtest123 is offline
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Default Living with calf haemangioma

Hi,

Has anyone tried using compression stockings? Just thought I would share our experience which might help some of you.

My son was diagnosed at age 8 (he's now 14) with intramuscular haemangioma in his right calf which involved all 3 muscle groups: peroneal, gastrocnemius and soleus. His right calf was noticeably larger and perpetually "turgid".

By the time he was 12, the pain became very frequent, almost daily (he could not straighten his leg when in pain and had to hop on one foot and was taking ibuprofen regularly to control the pain). Surgery was not an option as his haemangioma was extensive. We decided to try sclerotherapy and most unfortunately, it did not help his hemangioma but the alcohol injured his peroneal nerve instead. He suffered a complete foot-drop as a result and was put on an Ankle-Foot-Orthosis so that he could walk without tripping over his own foot. Thankfully, his peroneal nerve recovered eventually (after several months of anguish of having to live with both haemangioma and foot-drop).

After the whole episode (which now puts both surgery and sclerotherapy as too high risk for us), we were told by the doctor to try compression stocking (specs: 20-30mmHg, below knee, open toe). This simple solution has worked very well so far! It has been a year and my son hardly suffers from pain as long as he puts on his compression stocking and is able to walk and run without problems. He doesn't wear the stockings to sleep and at home, he is often able to go without stockings too.

Hope this helps.
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  #15  
Old 04-28-2012, 12:45 PM
Staceym90 Staceym90 is offline
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Default My story

Hi there my names Stacey i live in glasgow for anyone who doesn't no where that is its in bonnie Scotland .. You don't understand how overwhelmed I am to find out there is people out there going through what I am going through I am 22 and have been living with my mass tumour since I was three !! I have walked in total 4 years of my whole life ... I will tell you my story and I would love to have some feed back on any hope or treatment or doctor out there who can help me .

At the age of 3 I was experiencing some major pain I was admitted to York hill hospital to find out I had hemangioma of the lower leg !! My leg was very swollen and unable to straighten *caused a lot of disscomfort ... After reviving a biopsy to confirm my condition I was no long able to walk without a limp I got my tendants stretched 4 times to help movement in my foot it never worked .. Finally at the age of 9 I would under go an operation that would have a end result of me finally being able to walk .. It didn't go as well as dr bennett thought ... I lost a lot of blood and had to under go a blood transfusion after brought back to life it was a tricky operation an they took away 90% of my tumour ... It was better than what I had my leg shrunk in size and things where looking good !!! My leg was straight and I could walk again ... Not for long tho I woke up one day to find my leg buckled once again ... After going for a MRI scan the found a mass tumour in my upper leg griping around my hamstring after so many operations stretching my hamstring nothing worked ...! Doctors have tried to kill the veins feeding my Tumour but nothing works .... I'm now 22 and unable to walk taking obscene amounts of medication to make it through a day as the pain is unbearable the NHS told me three years ago there was nothing they could do for me ... I have a mass tumour still living and feeding of me just now and no doctor to turn to or talk to .... I need *point in the right direction I hope use can help*


Stacey xxxx
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  #16  
Old 11-03-2012, 01:45 PM
chartkopp chartkopp is offline
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Default 16 year old with hemangioma

About 4 years ago we found out my 16 year old has a hemangioma in her left calf muscle, it was a struggle going from doctor to doctor trying to get someone to help her. There are days where she wakes up and can not put any pressure on her leg at all. We finally got to the Mayo clinic in MN since we live in Iowa and they did the procedure last December. The relief lasted for about 2 months and now we are dealing with pain again. She wears a compression sock 30-40mg every day and still not enough relief. The first time we did the procedure they used the foam to block off the veins but when we went back they now want to do the alcohol and I am very afraid that it will cause other problems like drop foot or worse. When we did the first procedure the pain was mainly in her calf muscle but now it reaches from her knee all the way down to her ankle. We have also tried pain management and are using Lidocine patches in order for her to be able to stand the pain enough for her to get to school.

I haven't been able to find any other options to help her out. I guess I am hoping to reach out to anyone else that is going through these to see what else we can do or find any suggestions on where to go for help. Mayo clinic has been a great help and we felt really good with the doctor but just need to see if there are different options.

Thanks!
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  #17  
Old 03-08-2013, 06:40 AM
Hrn17 Hrn17 is offline
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Unhappy 20 year old with intramuscular venolymphatic malformation in right calf

Hey! I am 20 years old and when I was 12 I had horrible pains in my right calf and suddenly swelled up! After tons of doctors we got a diagnosis of a venolymphatic malformation. To this day I have had 12 sclerotherapy treatments and one surgical procedure (that left me worse than I was before) where they removed the lymphatic portion of the malformation. I'm in pain 24/7! We recently have been consulting a different doctor and found out (8 years later) It is also intramuscular. The malformation takes up my whole calf, the MR images you cannot see anything but the malformation! This new doctor says to relieve some pain I will need to have one of the 3 muscles that makes up your calf completely removed and also my Achilles' tendon released (from "toe-walking) since it has shrunk! This doctor strongly believes that removing this muscle will take away 90% of the pain but after the first surgical procedure I'm not so sure I wanna go through with this one. Also does anyone else have the issue with if you are standing for more than 5 minutes you area of the malformation will swell up and change colors and look really bruised? Really needing answers! I can't handle this pain much longer!
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  #18  
Old 03-08-2013, 03:33 PM
smurph smurph is offline
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Hi-
I'm so sorry you are going through all this. It must be terribly painful and frustrating. I'm not 100% of who would be the best person to consult but perhaps you might start by sending an email to one of these doctors:

Dr. Robert Rosen, Vascular Lesions of Arms and Legs Interventional Radiologist
Dr. Joseph Edmonds, Lymphatic Malformations Surgeon

You can email them but going to "Ask the Expert" sidebar on the main home page. They might be able to (or one of the other doctors on that list) give you some guidance in this area.
Good luck!
Shannon
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  #19  
Old 03-08-2013, 03:34 PM
smurph smurph is offline
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Also where are you located?
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  #20  
Old 03-08-2013, 09:18 PM
Hrn17 Hrn17 is offline
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I live in central texas, been all over texas (to dr. Purdy, Dr. Burns, and a couple other different ones that I can't pronounce or spell!). I will look up those doctors though and see what we can do. It is terribly frustrating and at age 20 I am now with a handicap tag for when I am able to drive!
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