Vascular Birthmarks Foundation Forum

Vascular Birthmarks Foundation Forum (http://birthmark.org/board/index.php)
-   Lymphatic Malformations (also known as cystic hygroma and lymphangioma) (http://birthmark.org/board/forumdisplay.php?f=18)
-   -   Lymphatic Malformation - Denmark (http://birthmark.org/board/showthread.php?t=2932)

ebu 06-22-2008 12:02 PM

Lymphatic Malformation - Denmark
 
Hello there

Since 1997, my son has been diagnosed with Lymphatic Malformation - especially Tongue, and mouth area. He has been through many surgeries during the last 20 yrs.

At the moment he is very ill, and awaiting another treatment/surgery here in Denmark.

It seems like he is getting worse every month - he has been waiting for allmost a year now.(he has been through several examinations and "experts" have been meeting to find a way of treatment - appearently without any conclusion other than he has to be treated - and it may be with another surgery).

At the moment we are at the point where any help would be very welcome. The doctors here seem to be very little interested in looking for help abroad, and we are meeting a wall of non understanding of the other symptoms hes is suffering from. I is very obvious to us that hes body reacts extremely to these ongoing swellings, and he is at the point now, where any food has to be of a soft type and something easy to chew.

At the moment we are very worried and it doesn't seem to go forwards with his health at all.
Worst of all - he is allways in pain, it is really hurting now and as a parent it is allmost impossible to maintain the good spirit, when watching your child suffering.

I am very proud of him, he keeps up his spirit, keeps on going out with friends even when he is tired and hurting. Thanks to a very good family practitioner and a wonderfull psykologist - both of them taking his problems very sireously - he is in a better mental state than to be expected. Every one in his surroundings helps out.

Has any one out there experience within the other symptoms like being very tired or reacting with swelling of tongue and moutharea whenever he is stressed or when eating certain food.

He has problems with his lungs and he had a large surgery a couple of years ago - they said it seemed to be an infection, but they could not see it in his blood samples...??.
His liver swells sometimes and they don't know why, just that it seems to be something he has to live with???

Do you know any of these symptoms when suffering from LM - and do you have any idea who to contact in Europe??

Eva

missy 06-22-2008 12:38 PM

Go to
http://birthmark.org/experts.php

and write in to our european expert, Dr. Tombris. He might be able to answer your questions or direct you to someone in your country who can help you.

Missy

ebu 07-03-2008 11:25 AM

Hello Missy

I will try to contact Dr. Tombris.
I just hoped that there would be any other persons who knew symptoms like my sons.
They are allways looking at his tongue and mouth - even though he is having a lot of other symptoms. It seems like they don't want to see the whole picture.
We are still awaiting a date for his surgery...and have been waiting for exactly 1 year now....

Eva

Cederløv 07-06-2008 11:43 AM

I hope it will go better for your son soon..
Best regards Cederløv (Norway)

sweet pea 09-03-2008 12:14 AM

I went through a lot of extreme pain related to my LM for several months before finding a doctor who performed surgery for me. I was told that stress doesn't affect the LM directly, but I still think it does. Since whenever I get stressed out my LM area seems to be more tender/sore. The tiredness is probably because of the pain. Back when I had the extreme pain, I'd be exhausted by the end of the day and just want to sleep.

It is very possible that it was an infection in the lungs and didn't show up in the blood samples. It really isn't all that uncommon for that to happen. Though with the liver swelling, I'm not sure about that.

I'd go to the find a physician link on the home page of this web site. Hope you can find some answers and treatment.

jopedranti 09-16-2008 05:04 PM

LM in Denmark
 
Hi,
My son was born in Göteborg, Sweden and he had his surgery at Sahlgrenska University Hospital. He is now 14 years old and we live in California. There is a doctor Joachim Werner at Marburg University Hospital in Germany and we went to see him when we lived in Germany. Dr. Werner is supposed to be a good doctor and specializing in lymphatic malformations.

I am not sure if he still works at the university but it I would check it out, Marburg is not so far from Denmark. He also speaks pretty good English if you don't speak German. I know that discussions are going on in Eu about covering medical treatments in other country than your own in Europe. At least it is what the Swedish Newspapers are saying.

Johanna

tessamom 09-18-2008 04:23 PM

ON the yahoo LM support there a few families from Europe on the forum.

http://health.groups.yahoo.com/group/lmsupport/

ebu 10-27-2008 09:31 PM

update from Denmark
 
We are still awaiting some response from the danish doctors. Sadly we are not allowed to try to get help abroad without paying the expenses ourselves. The danish Doctors have to try everything they can before we can get help elsewhere.

Does any of you have any knowledge of a drug called "propranolol" it is mentioned in another fora and seems to be helpfull in stopping the growth of the birthmark.

E from Denmark

missy 10-28-2008 12:21 PM

This is from Linda, concerning beta blockers:

Use of Beta Blockers for treating Hemangiomas

We hear great things about the use of beta blockers for treating hemangiomas and know that some very prominent physicians are using BB but we have no clinical evidence of the long term outcomes on hemangiomas and until we see some studies that are large group, we can't take a position on it. But, we are hopeful that it will offer hope, especially for some of the treatment resistant lesions. The studies I have seen are very small, case by case. Only time will tell.

ebu 11-09-2008 04:10 PM

Hey Linda

Thank you for your reply..

We are now taking action. My son just had a total break down, he can not handle the constant pain and the fact that he is tired all the time. We have chosen to put pressure on the system/hospital, we have to act and will use all the information we can find to get som help now.

This will be put to use..

Thanks to every one participating in this homepage...it helps soo much to have a channel outside the official systems and hospitals.

E


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