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Go Back   Vascular Birthmarks Foundation Forum > Hemangioma Help > Lymphatic Malformations (also known as cystic hygroma and lymphangioma)

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  #11  
Old 09-09-2009, 08:48 AM
NilsMH NilsMH is offline
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Hey.

Just wanted to get some things off my chest.
Iím the son of Eva and its been about 6 mounts sins I got my operation.
They closet one of the arteriesís to my tongue and made a V insertion in the back of my tongue thatís about 6cm long and 2 cm wide, the operation went well and the healing process was as they expected.

But I have to say I donít know if it helped. It helped a lot with the swelling back there. But I still have a lot of Paine in my tongue and Iím sleeping a lot. The doctors are talking about doing a second operation on the front. Hoping that that will ease the Paine. But they still wonít listen when I say that I have a lot of pain in my joints and muscles, itís as if they just donít care about it or donít want to see the connection. itís hard for me keeping my spirit up and I Know it must be even harder for my mom and all you other parents and partners out there to keep watching your children/partners in pain and see what we go true before, under and after an operation. because i just broke up with my girlfriend a mount ago she couldnít handle my constant sleeping and the fact that I always was in pain, and I totally understand and respect her and her dissension.

So I just wanted to give a little bit of poetry to my mom and all you other worried moms out there.

When all is sad, or all too wrong
We seem to count on no other
For a smile, laugh, or gentle touch
We want and need from mother!

Whether there is good or bad
Between our ups and downs
She shares her healing power
Forever not to frown.

A mother stands beneath
A silhouette of peace and kindness
Giving all the care she has
Through her spirit and love hath find us.

A Mom will always worry
From whatever might or may
Inflict no good upon our souls
And for that, a Mom will pray.

A motherís strength will always?

Help us through a time of mournó
And give compassion to those in scornó
Mother will bind when all are tornó
She is light, when dark has formedó

So to that a mother should be thanked
For all the magic given
To us when we were born!
Thanks Mom.


Nils
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  #12  
Old 09-09-2009, 11:27 AM
missy missy is offline
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Well, welcome Nils!

The poetry is very beautiful.

If you have a second operation, do you know when that would be? And why do you think the aches and pains in your joints and muscles are connected with this? I haven't heard of that much, so tell me what could be causing that?

Missy
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  #13  
Old 09-09-2009, 06:36 PM
NilsMH NilsMH is offline
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Hey missy.

Thank you for the compliment on my poetry.
Well I don’t know if they are willing to do a second operation. the doctors here in Denmark are weary hesitant about operating on my tongue coz there have been a lot of complications with my first to operations, so I don’t know anything about a date yet.
And I think the pain in my joints and muscles are connected coz my tongue starts to swell a bit and get numb before the Paine starts. So I get an early warning I always do. Whenever I get sick my tongue starts to swell up before hand.

Nils
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  #14  
Old 09-09-2009, 11:57 PM
missy missy is offline
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Do me a favor, if you will.

Go to http://birthmark.org/contact/

and write a short history of your symptoms and treatment to date. I'd really like to send it out to a few different people. I can take that and easily forward it to a couple of different physicians and see if any of them have any suggestions for you.

Missy
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  #15  
Old 10-07-2009, 01:59 AM
Andi Andi is offline
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E, I'm so sorry to hear about your long struggle. Within the last three weeks our two year old son was diagnosed with a lymphatic malformation in his neck. He will undergo scleratherapy next week. We have been working with an amazing team of doctors in Cincinnati, Ohio led by Dr. Denise Adams. If you "search" her name on this site you'll find her contact information. I know that Children's Cincinnati sees patients from all over the world. Hopefully Dr. Adams and her team could further help you.
Andi
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  #16  
Old 10-07-2009, 11:28 AM
missy missy is offline
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Here is Dr Adams contact info:

Dr. Denise Adams
Cincinnati Children's Hosptial,
Department of Pediatrics, Hematology Oncology
3333 Burnet Ave.
Cincinnati, OH 34229
513-636-8605.
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  #17  
Old 01-07-2011, 01:53 PM
seanoya seanoya is offline
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Default Lymphangioma, propranolol, coblation and hope!

Hi all,

New member here from England and would like to share some thoughts / concerns:

Our 12 year old daughter has had a lymphangioma on her tongue since birth. Some doctors say it is a hemo-lymphangioma. Most of the time it is not a problem, but once or twice it has swollen quite badly needing hospital visits. It has been fine for years but just recently it has flared up again and for several weeks. We have been back and forth to Max Fax consultants who seem as perplexed as they were 10 years ago. We are yet again messing around with steroids and antibiotics at what seems like a random approach to dosage, and with no success. She is in pain and is struggling to eat and drink.

One long night in November I found myself yet again scanning the net for help and found the VBF site and references to Drs Waner and Levitin. I emailed them both and went to bed. The Next morning Dr Levitin replied and we have been in touch ever since. We are committed to visting him in April this year when we are planning to have the first phase of coblation treatment. I don't want to think about the cost but I know it won't be cheap.

I can honestly say Dr Levitin has already given us something we have never had before - hope.

He has and continues to be a source of strength and optimism and I truly believe that he will sort this for us.

In the meantime, with Dr L behind us and with April in our sights, we continue to battle with the UK National Health Service and all its red tape to get our daughter's swelling and pain under control. We are literally experimenting with doses of prednisolone, antibiotics, ibuprofen and paracetamol. We are also considering trying propranolol (as it is supposed to be low risk) although there is no evidence it works on LMs.

I am optimistic for the future for all of us. I think we can help each other and help the medical profession by sharing knowledge.

Cheers
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  #18  
Old 01-07-2011, 11:22 PM
missy missy is offline
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Hi and welcome!

Dr. Levitin rocks, doesn't he?

Keep us updated and we'll keep you in our thoughts.

Missy
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  #19  
Old 02-10-2011, 09:22 PM
seanoya seanoya is offline
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Thumbs up Lymphangioma and hope

Hi Missy,

Not sure where to post this, so thought I would reply to you. An update on Cara's situation since my last post. the outcome so far is good. Cara looks very well and is happy but it was a rough ride.

All through December and January Cara suffered with painful swelling and bleeding of her tongue. Our plans to visit Dr Levitin in April were overtaken by events when she was booked in for urgent laser treatment. It seems there is at least one person in the UK who knows about 'lymphatic malformations' as he calls them - Dr Ben Hartley in Great Ormond Street Children's Hospital in London.

The procedure seemed to go well - she was allowed home the next day and went to school the day after that, but it was to be short-lived. She suffered from delayed post-operative swelling and quite badly. I suspect it was a too-sudden tapering off of the steroids. She was taken back into hospital where the swelling rapidly improved and then returned just as quickly, and with a vengeance. The ENT doctors were very good at reassuring us that, although quite extreme and unpleasant, that the reaction was typical of healing after laser. This was confirmed by Dr Levitin via his regular email contact with us throughout this whole saga. Without his 'virtual' presence, I am not sure how we would have coped.

Finally, Cara was allowed home again and has been fine since. It has now been only two weeks since her treatment and it looks to be healing completely. I understand she may need follow-ups, but for now we are happy that she is no longer in pain, discomfort and distress. We are taking one day at a time.

We are still hoping to come to the US at some point as Cara really wants to meet Dr Levitin "one way or another" as she puts it.

I just wanted to let people know that patience, research and the right expertise (Dr Levitin for example) is essential to get the right treatment. For months we were messing arround with a Maxillo Facial consultant when we should have been dealing with ENT, Vascular and Pediatric professionals.

Thanks for listening

Sean
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  #20  
Old 02-10-2011, 11:36 PM
missy missy is offline
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Thank you for the update!

Cara sounds like a brave one. That must have been awful to go through, but I'm glad she came out better than she went in!

So, what's next for her? Will she have to have any more treatments?

Missy
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