16 yr surgery fears

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16 yr surgery fears

Postby freenow98 » Tue Jun 12, 2007 12:05 am

Hi everyone,I know there are a number of Asap members that know or know of my daughter Megan Welborn and her long battle with her illness.Megan is heading back into surgery again and this time(for the first time)she is really having a hard time with the thought of going into surgery again.Megan is going in for a fusion and if she did not have such complacations she would be having TC surgery too but,that's not the case for her.This past Feb.13th Megan had a very long stay and we did not come back home until April.I was taken into a room right after Megan's last surgery and shown just how serious Megan's condition had become(material that was used in past surgeries had broken up and attached themselves to Megan's brain stem)and because of this I was told twice during her surgery things became very serious and they became very worried.I knew this but did not pass this on to Megan because I was doing all I could do just to keep her sprits up but,without knowing a nurse was asking if Megan was the case the doctors had named eggshells because that's what they said it looked like inside.I do not know how to calm her nerves or even what to really say because I too am so very worried.I have put my own health on the shelf in order to be here for Megan as much as I can and because of that I just stay in pain.Megan goes tomorrow to have her Pic line put in and then we leave on Wed. to the Ronald McDonald house on Long Island.Mega has testing all day on Thur.7:30am to 6:00pm and then on Fri.15th she goes in for traction and will stay in traction thru the weekend until Mon.18th whe she has surgery.If anyone would like to you can go to Megan's care page and read her up dates or leave her a message because we print them out and bring them to her.Go to carepages.com fill in your info and then go to megansworld and that will take you to her site.If you want to send her a card you can send ot to the Ronald McDonald house(address on website)or just send it to out home(email me if you want out home addy. freenow98@yahoo.com).It means the world to anyone in the hospital to know someone is thinking about you but,when you are in the hospital for a long time it really can mean life because it can be just the thing to help someone to keep going or just give up.Thank you all for your time and God bless -sheila Frantz
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Postby mac » Tue Jun 12, 2007 1:25 am

Sheila, I will definitely go to the care page and post a note, and will send a card to the RMH. I am so sorry to hear all that is going on. I remember when you were at TCI for so long and unable to come home. It has been a very very rough year, in fact, those words sound hollow, don't they. I simply cannot imagine the fears and worries you both are going through. I will be praying for our Lord to work a mighty deed on your behalf. He is able! She will be in traction all weekend? Wow...

I will be going for the fusion later this year. In my own way, well, it's a scary thing too because I have a broken neck. I guess I would tell Megan that the fusion is the pathway to keeping her whole. It really seems to me that the extraction fusion is the KEY to keeping her PFD correct, her flow correct, her brainstem and all of that where it needs to be. It's like building a dam with concrete, which sounds good, but a dam with concrete laced with steel bars is much much better and more stable. They need to get her skull and neck very firmly stabilized. That will make the other things work.

At 55, it's a surgery I don't want to go through, but I know I have to b/c it's the key to wellness. I have bad stability or maybe no stability, and I can tell that when you are like that, your head wobbles and nerves compress and well, that's why I'm up tonight. Now, I know that what I'm dealing with is a fraction of what Megan is (and you) but I just wanted you to know I'm speaking from experience. Megan needs that shoring up and stability...so everything can be kept in place and safe.

Your words divulge your mother's broken heart. I'm sure you must be so, so tired. I pray He will lift you up and give you strength, and give Megan confidence and continued courage! She is an example to all of us.

Bless you, I'll be in touch, and let us know how things are going.

love,
mac (Virginia)
mac
 

Postby kiminfla » Tue Jun 12, 2007 9:11 am

Sheila, You and Megan have been through so much. I pray this next surgery will be a success and things will improve. I'll be sure to check out her carepage. Please let her know that she's loved and we're rooting for her! Be blessed, Kim
CM - PFD 9/7/06
Life is mostly froth and bubble. Two things stand like stone: Kindness in another's trouble, Courage in your own. -- Adam Lindsay Gordon
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Postby Janice » Tue Jun 12, 2007 1:57 pm

Hi Sheila,

Both you and Megan will be in my prayers. Everything will turn out well. Please keep your faith and your spirits up. Let Megan know to stay strong, everything will turn out well and she will improve. Take care of yourself also.

Stay Strong!!
GOD Bless!
Janice

Thoracic: SM T3-T12 / Disc Buldge T7-T9 / Mild Scoliosis
Cervical: SM C2-C6 / DDD / Kyphosis
Hemangioma's: T9-T11 & L4

http://janice-mylifewithsm.blogspot.com/ (Copy & Paste link into your browser)
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Postby jjames » Tue Jun 12, 2007 4:39 pm

Sheila

I had the surgery (ACM decompression) when I was 17. I know that my parents would be willing to talk to you, and I would be willing to either speak to, or e-mail Megan if you think it would help. I am 26 now and a mom, but I remember it like it was yesterday. Good luck to you both. My prayers will be with you.

JJames
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daughter's surgery

Postby freenow98 » Tue Jun 12, 2007 8:52 pm

I want to thank all of you for your kind words and prayers for Megan and my family.Mac thank you for sharing your story so that I could share it with Megan to comfort her during her big case of the nerves.I want to thank all of you for saying you will go to Megan's care page and keep checking in.I can't express enough how much that means to Megan but also to all of us.Mega went today and had her pic line put in and this time it was super painful compared to her last one and then she had a feeling of her heart speeding up and slowing down a couple of times so I have been having my own case of the nerves.Thank you all and God Bless ,sheila Pa
freenow98
 
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Location: carepages (Megansworld)

Just had to share

Postby freenow98 » Fri Jun 15, 2007 7:09 pm

We are so happy so I just had to share with everyone.Megan went for her traction today and to make a long story short after having it and seeing all her new test we have been told at this time she does not need it.We are thrilled and the scans showed the last surgery she had is doing it's job and her brain is not tilted,she has good flow and her syrinx is going away.We were then given what the doctors called the bad news which is Megan will be going in for surgery on Monday but it will be tethered cord because the test did show that there is no dought she has that.We are happy and thank you all for your prayers,God Bless sheila Pa
freenow98
 
Posts: 23
Joined: Thu May 24, 2007 10:51 am
Location: carepages (Megansworld)

Postby mac » Sat Jun 16, 2007 12:20 am

Sheila, this is such exciting news! I just went to the caring pages and left a message for Megan. I'm so glad that she doesn't need the fusion. From all that I have read and learned, though the TCS is no walk in the park, it is much easier to recover from than the fusion. Keesha, is that true, in your experience? I'm just glad she doesn't need the rods and also, glad that she will have the surgery that will alleviate all that pain she's having in back and legs/feet. I have this too and can't wait to have the surgery to fix it!

take care, have a good weekend, and keep us posted on Monday, okay? I mean, when you get to it. I'll keep checking on the site, and I'll send a present to Megan to the RMH, too. Something she can read while in hospital.

hugs, mac
mac
 

Oh thank you Mac

Postby freenow98 » Sun Jun 17, 2007 10:59 am

Yes Mac you are right about the TC it is no walk in the park speaking from my own point of view(had it in Aug.myself) but as we know it will not be nearly as long for Megan to get over compared to a fusion.I on the other hand am a different matter after talking with Dr M,looks like I may have to have the fusion done(I just do not know if it comes to that if I can)but,something has to give because I am choking all the time and I was told I sound terrible.I am waiting to move forward on me until Megan is out of the woods so to speak.Thank you so much for going to Megan carepage and we will be updating that most of the time daily depending on acess to a computor and time.Thank you and everyone for your continued prayers and best wishes for Megan and our family. Sheila Pa
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Location: carepages (Megansworld)


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