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momofalotofrugrats
31st May 2005, 07:05 PM
Hi everyone

Lauren had her surgery biopsy on the 23rd of May they deflated one of her lungs so they could get to the tumor for the biopsy she was then in Peds ICU overnight because they had a chest tube in her for the drainage from the site of the biopsy and also to help keep her lung reenlisted. She was doing good so they removed the chest tube on the morning on the 24th and had to wait 5 hours to make sure there was no problems and her lung stayed inflated. They released her that evening which was nice as it's a very depressing place. . We were told to watch her closely as she could still have problems with the lung. We were told that the tumor looked friendly what ever that's suppose to mean and was encapsulated which from my understanding means it hasn't spread. We finally got the results from the Biopsy late Friday afternoon they believe it's benign but can't be a 100% sure due to the fact that 1 in 4 of these type of tumor aren't truly benign even through they show benign. So it will still have to be removed due to this fact. The disease she has been diagnosed with is Neurofibromatosis or NF1 which is very rare it's only found in 1of 100,000 kids and normally in people at 10-40 years of age so it's very rare for a child her age to have this disease and already have the signs and symptoms. The tumor itself is called Ganglioneuroma or Ganglioneuroblastoma We have been give both terms for the tumor even though they are a bit different. We are currently trying to get her referred to a specialist dealing in the disease and also the tumor which is linked to the disease. The neurosurgeon at Portsmouth thinks he can remove the tumor and said he would try but since the tumor itself has wrapped itself around her spinal cord and is also in the spinal canal we don't want someone who says he can try he has never done a surgery on anyone as young as Lauren and has never dealt with this type of tumor or disease so wish us luck in getting Tri-care to agree to have her seen by someone who has. Soon as the referral for the second option is up in we be making an appt to see the specialist hopefully this is a quick process. As she will need to be followed for the rest of her life this is an incurable disease at this time so it's something she will be dealing with for the rest of her life. Soon as they figure out what treatment to do for this which they now believe was also a major part of why she has infantile scoliosis we'll let you'll know it's going to be a very long road but not that I've wrapped my head around it I can move forward and help get her the treatment she needs please keep praying for our little girl as she needs every single one. I will keep you'll informed as information comes to us or I find out different things. Cathy

jfkimberly
31st May 2005, 07:34 PM
Cathy,

I learned little tricks for dealing with Tricare last year... It allowed me to see Dr. Campbell, the inventor of the Titanium Rib, under Tricare. Seriously consider doing research and finding the surgeon you want to have for Lauren's surgery, then tell your referring physician that's who you want her to see. Don't call Tricare up and attempt to deal with them directly. If your referring physician can make a case for it being "medically-necessary" that Lauren see a specific doctor, then Tricare will accept that and pay. Unfortunately, you'll need to restrict your search to your geographic region. But aren't you in a region with a lot of big cities (and, therefore, more experienced doctors)?

As for finding that experienced physician, you might want to join a message board for NF. There are plenty out there, and the members will certainly tell you which surgeons to avoid, and might know of some particularly good ones for your young daughter.

On another note, I'm disappointed to hear of Lauren's NF1 diagnosis. It is of some comfort to know that the tumors associated with the disease are typically benign. The MRI only showed one tumor along her spine at this time, right? We will hope that that is the only one that develops in such a sensitive area.

Thank you for sharing with us. I will keep Lauren in my thoughts. If you need any support or guidance for dealing with Tricare, send me a note.

newgirl
31st May 2005, 08:48 PM
Cathy,
This is a very quick reply, I am sorry to hear of Lauren's diagnosis, but I am sure that at least you are glad that you have a definitive diagnosis. I really do think that it is very important that you contact a specialist on this disease before any surgery is planned. There may be other options such as radiation therapy and chemotherapy to shrink the tumour before surgery. I know that these treatments are used mostly for malignant tumours but they have a huge role in treating benign tumours in awkward spots such as in the brain or spine. I know that your medical insurance has a large say in where Lauren is treated and by whom, but maybe you could convince your physician to refer her onto a specialist. Surgeons are wonderful doctors, but very often they have tunnel vision, in that they see a problem and the only solution is to surgically remove it.
I will be thinking about you and Lauren,
Nicola

momofalotofrugrats
31st May 2005, 09:14 PM
Thanks I will be looking for a message board for this disease also. I'm hoping that soon as I get the refferal for the speicalist that I can get her in pretty quickly I called today and was told they are booking out to july already and that I can't make an appt with out the authorization number. So it's a waiting game. Cathy

sins
31st May 2005, 09:20 PM
Hi Cathy,
One of our members Joy has NF1 and had a fusion for scoliosis.It's not unusual to have the two together.
I'll contact her and ask her if she knows a decent NF1 message board.
You know we'll try and do everything and anything for you.
Sins

Joy
31st May 2005, 09:38 PM
Hi!! I have NF 1 myself, so I'll try to answer any questions you might have.

That's too bad that Lauren has a tumour on her spine. Hopefully, they are able to remove and she won't have any further problems.

I'm not sure if I have dealt with that type of tuomour before. I know that I had one removed from my hand when I was very young, 5 I think, but a plastic surgeon performed that surgery.

Also, NF1 is genetic - so you or your husband may have it. I think there is a possibility of it being a mutation, though. I've had NF since birth, but I was only diagnosed a few years ago.

For more info on NF, try www.nf.org. And, feel free to send me an e-mail anytime at alenaparkinson@hotmail.com and I will get back to you as soon as I can.

I'll pray for you and Lauren! Good luck!

Joy
31st May 2005, 09:51 PM
also - http://www.ctf.org/

Amazed Jean
1st June 2005, 05:17 AM
Cathy, Whew, you have all been through the ringer! We are still thinking of you and hoping that times get a little bit less hectic for you. I'll defer all the medical advice to those who know but I'll still remind you to take notes and keep a well documented medical record. Lauren will need this info forever. Good Luck and hang in there and God love ya!

andrea
1st June 2005, 02:31 PM
Cathy, thanks for sharing your news with us and keeping us informed. You certainly have been through a tough time recently, but it sounds like Lauren is doing well and being really strong, which is great.

Unfortunately I don't know anything about NF1, so like Jean I will leave the advice to those who do. I won't be around for a couple of weeks, but i'll be thinking of you guys and hoping you get referred to the people who know all about this and are best placed to help.

Take care
Andrea