Everyone please read; Lymphatic malformation treatment.

[jmills]

I would encourage everyone to read a paper posted recently under research papers on this sight. http://174.120.2.174/pdf/LymphaticMa...nTreatment.pdf
Dr. Shiels is an Interventional Radiologist and specializes in Lymphatic Malformations.
It appears that his success rate is at the top in his field.

[missy]

Hi and welcome,

Thanks for taking the time to stop and give your opinion here! Since your daughter's treatment, how is she doing?

Missy

[jmills]

She is doing great. She had a treatment with Doxycycline, middle of January and the improvement is very noticeable. My daughters suffering was much less with this, compared to OK-432 and results are much faster. We will have another treatment in Spring or summer this year.

[missy]

Wonderful!! Please continue to let us know how she's doing. How many treatments would she have to have with this protocol?

Missy

[jmills]

She will need two treatments, total ,to get everything under control. She will have to be checked once a year, Dr. Shiels averages 1.7 treatments per patient. Some only need one treatment.
The good thing about this is, it isn't an FDA trial like OK432 and the dr. does not have to follow a protocol regulated by the FDA. The time between treatments is flexible and number of treatments are decided by patient and doctor. No other parties have a say. Dr. Shiels outcomes, using doxycycline for microcysts, is much more successful than OK432.
Thank you for your interest Missy!

[missy]

That's interesting... I'm glad you posted it.

Please let us know what happens after the next treatment... we'll be interested to know!

Missy

[Aolmstead]

Hi Jmills,

I am new to this site (I posted my story under 9month of with Lymphatic Malformation; you can read it if you like). Anyhow I am so inspired and hopeful with your story......

We had a local ENT doctor in Las Vegas do the sclerotherapy procedure and injected Doxycycline into her left mass neck (12/09) and within two months the size significantly decreased. She looks normal. However, we did a MRI follow up check up a couple of weeks ago and discovered a few residiual fluids remain in her chest above her left lung. Now the ENT doctor is referring us to a radiologist pending date. We'll have a consultation to get a better understanding what the radiologist will do. Not sure if this person is experienced.

If you don't mind asking..how much was the cost for Dr. Shiel for you daughters treatment? You mention 2/yr treatment is necessary....now will LM reoccur again after the 2/treatment? How long will this last??

Again, thank you for shedding some positive light.....And I am truely happy that your child is recovering well....God Bless...

Please write back if you get a chance...either to my posting or this email.
Thanks.

[Miss Mummy]

My daughter has a lymphatic malformation in her leg pelvis and vagina and she has recieved 4 surgeries where she was injected with doxycycline and on the last one she was injected with doxy and pure alcohol and sadly the treatment has not been successful.. we have noticed some change but nothing dramatic its starting to seem our only option is to surgically remove it but then there is no guarantee and there are extremely high risks sorry to have dampened your positive thinking but just know that doxy dosent always work

[Andi]

We had a wonderful experience with Doxy and our son is doing great. He only required one upfront treatment and is being monitored annually. The doctor's at Children's Hospital in Cincinnati are awesome and it was definately a collaboration to decide the best form of treatment. I will caution some of you.....we initally met with a surgeon who wanted to remove a large portion of our son's cheek. Thank God we checked into other options.

[sweet pea]

It's nice to hear about all the new treatments. I wish they had been around when I was a child, though the surgeries I've had have been very successful. I would always recommend trying other methods besides surgery first, but if it comes down to surgery, just make sure the surgeon has experience with treating LM.