been away for a bit..stroke and two surgeries on the books.

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been away for a bit..stroke and two surgeries on the books.

Postby sweettartgirl » Sun Mar 16, 2008 1:20 pm

Hey all!
Laura here :) I used to post quite often, but things have been so chaotic since my ACDF at TCI on Xmas Eve that I haven't had much time to post but do read most of the posts. I just wanted to let you guys know where I've been because you've all been so supportive. For those that don't know me, I'm 19 and have a pacemaker, the PFD, craniocervical fusion, TCS detethering, and most recently an ACDF due to instability bellow my fusion from my EDS. So I have CM, EDS, TCS and the works. Anyways. So here's what's been going on (at the end I have a few questions). The day after I was released from NSUH from the ACDF, my mom noticed my right side of my smile didn't, well, smile. We soon found out from Dr.B that I had a paradoxic embolic stroke. So there I was 18 with a stroke and my smile doesn't smile, can't swallow, hoarse voice, memory problems, right sided weakness. So they decide to check for a hole in my heart called a PFO to see if the stroke could've taken a direct flight through the hole up into my brain. Turns out I have a pretty big PFO. So, tomorrow (monday) I will be having surgery to go in through catheters in my femoral artery to basically put a plug into the hole between my heart's two chambers. Luckily, this will bring my stroke risk down but I'll now always be at higher risk of stroke due to having one and many other factors. I will also be on aspirin for the rest of my life. I'm okay with it all and know God is leading me, so no, I'm not nervous :) I'm also working w/ Harborview stroke for prevention and rehab and stuff.

So then about mid January my TCS symptoms come back extremely hard and all at once. We find out from Dr.B that I have re tethered since my TCS surgery with a DIFFERENt, local doctor in Portland a year ago. It's almost worse than it was. I need to be retethered. I was in my freshman year at the University of Washington (i'm pre med) and I made the hardest decision in my life to take medical leave til the fall. WIth all these dr. appts, stroke stuff, and two surgeries on my plate and being in pain constantly no less than a 7, that is a full job in itself as I'm sure you all know. I'm very excited to get better and go back in the fall though. So I have my followup appt at TCI in two weeks and so I have all the testing (no MRI due to pacemaker) and meeting with Drs Kula and Bolognese. I then have to go to Ohio to see a cardiologist there and will then go back to NY where Dr.B is going to have me wait there and fit me in for a redetethering. I've been told that everything will be doubled in this surgery for me since it's a redo and I have a lot of scarring, so it's going to be a big surgery, hosp. stay, recovery etc. But I'm actually looking foward to it b/c it's another shot at hope you know? So that's my deal and what is going on.

Now for a few quetions. 1) have any of you had a stroke? If so what were your symptoms and did you get over all of your deficits? Also any specific symptoms to look out for in my future? 2) Have any of you been de tethered two times? If so what was your outcome and how was the surgery and all. 3) anyone who can let me know about their experience w/ the TCI detethering please let me know. I'm the type of person who wants to know every little detail going into something. My first TCS surgery they did minimally invasive (and was the worst theyd seen) so I only have an incision of about an inch and I understand this one will be at least 8 inches. So pretty much if you have had a similar experience I'd love to know the outcome!

I pray for you all daily it's very interesting to see new people here and realize I was in that spot three years ago when I was first diagnosed.

God bless,
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Postby dtyree » Sun Mar 16, 2008 2:20 pm

Dear Laura, Grettings on this good day!!

Yes, I did have an acute stroke this past February. The day began as ususal, had things to do and ordered my schedule. I was feeling very light-headed with a sense of less fluid in my body from the chest up. Well, here it being February, still had Christmas Tree lights up that needed to come down. So, was up and down the ladder, several times, undoing what I did pre-Christmas.

Went through the paces and felt more and more tired as I progressed. Helped out a neighbor with her car, then went in for a nap. Woke to fixe supper, which I normally do, finished and went down for another nap. I was extremely fatigued. I slept for not more than 5 minutes and awoke. I noticed I could not move my right leg, arm, and half my mouth worked. Went to the ER. They said I had a stroke, and I was terrified. They could not give me ATP (?), the medication to assist blasting a block because my blood thinner in my system was too high, it was 1.8 and had to be at 1.5 or lower. Everyone in the ER room left and I was alone. I began crying. My world as I knew it just closed.

Was sent to the neurological intensive care. About 15 hours after not being able to move my arm, it suddenly moved. I stretched it, it felt good to move muscles, hands, fingers. About 3 hours later, this electrical shock went from my hip joint down to my toes and my foot just jerked. About 5 minutes later, the same thing and I could move my leg and foot, it felt wonderful. I had a HA and was still weak, but movement was good.

The next morning, PT came by to see if I could walk. I could take about 5 steps and had to return to bed. Later on, I practiced walking and did a little better. The next day was up and walked a bit down the hall, about 20 feet and had to return to bed. Still worn out. The next day was better and was doing laps (walking) around the unit, still slow, lightheaded, but moving.

Was doing better the next day and was released with PT visiting the house. They made a dx of acute stroke. The remainder of Feb was still difficult. Felt like my brain was sitting in the chair next to me, thought processes were very difficult, some incoherance, and still fumbled around a lot.

Now March, thought processes are much better, but still fumbling around. Do not think much permanent damage took place. I still take PT and do as much as I can, but quality of life has decreased quite a bit.

You sound like you have been through the mill yourself. Quite a lot going on in your life. I pray that your surgery is a great success and at least, have one thing behind you so that you can focus more on the future and all that it brings.

Been called a "walking medical dictionary".
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Postby Ryzing » Sun Mar 16, 2008 3:18 pm

Hi Laura - and welcome back!

You may want to try to get a hold of Kristy - aka OKIELOANCHICK - she, too, has suffered with a stroke. She is a great person to talk she has a wicked sense of humor! I'm sure she'd be a big help.

Syringomyelia - C4-T12, Fibromyalgia, Scoliosis, DDD
"If you don't change your beliefs, your life will be like this forever. Is that good news?"
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Postby Snoozie » Sun Mar 16, 2008 4:18 pm

Hi Laura, I don't have any advice as far as the medical goes but I just wanted to say that my prayers are with you.

What a great attitude you have with all the problems you are facing. In church today the message was that no matter the obstacle by placing God first we can make it through. I will be thinking positive thoughts and prayers for you. Let us know how things go for you...Sue
Seek peace, and pursue it. (Proverbs 34:14)”
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Postby kiminfla » Sun Mar 16, 2008 7:02 pm

Laura, It's so great to hear from you but I'm so sorry to read all that you've been through since your latest surgery -- I know you have a wonderful attitude and are an inspiration to us all -- May God bless you, friend. Please keep us updated...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 angie7 » Sun Mar 16, 2008 8:10 pm


I dont have any advice but just wanted to say that your strength through all that you have been through in your young age is amazing!!! You have a wonderful attitude! I was 24 when I was dx and I thought that was super young to go through it all....GL with your upcoming surgeries, I will be thinking of you.
Mama to 4 y/o ID twin girls (2006)
CM 0, C5-T1 syrinx, Scoliosis, Hypotension; PFD 2004
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Postby georgiagal » Sun Mar 16, 2008 8:17 pm

Laura, having just read your post, I am amazed at the spirit you have at such a young age! You have really been thru the ringer lately and that great spirit is going to be of much help in the days/weeks & months to come during your recovery.

I wish you all the best and look forward to hearing how well you are doing after your surgeries.

Good luck. I will keep you in my thoughts & prayers.

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Postby dani » Sun Mar 16, 2008 9:51 pm

Hi Laura,

I wish you all the best for your upcoming surgeries. As HC said, I hope this is the last round of surgeries you ever need to have. I'll keep you, your family and your friends in my thoughts - I can imagine this has been a difficult time for all of you.

Good luck with your studies. I think you made the right decision to take medical leave. I'm also taking a break from my studies due to my health. It was a difficult decision to make, but I know it was the right one.

You're such an incredible inspiration Laura. I'm amazed by your strength, your courage and your will to suceed. So many obsticles have been placed in your way, but you refuse to give up.

Danielle (Australia)

Ehlers-Danlos Syndrome, Syringomyelia, Tethered Spinal Cord and Craniocervical Instability.

C1/C2 Fusion: 18th December 2009.
Spinal Cord Detethering: 19th November 2008.
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Postby Beverley » Sun Mar 16, 2008 10:13 pm

Hi Laura,

I too have to agree with everyone. I love your spirit. I agree too that I looked forward to having the surgery because it is hope where you did not have hope before. At least if they say you can try surgery to fix some of the pain and problems it is 100 percent better than not being able to do anything to fix it.

I will keep you in my prayers for your journey. May this be the one that brings you back to a pain free life.

Good Luck and God Bless, or better yet just God Bess because with God on your side you don't need luck.

Decompression Surgery Feb 8, 2008 w/Duraplasty & Laminectomy C-1&2
Cervical Disc Fusion 11/08 C5&6/6&7- Mild Disc Bulge L2-Focal Hemangioma
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Postby Janice » Mon Mar 17, 2008 9:06 am

Hi Laura,

I'm so sorry to hear about all the trouble you've been having. You are a beautiful and courageous young woman with loads of strength and determination.

I pray your surgery and recovery are successful and that you return to school when you're ready. Take it easy, don't push your healing process, and in return your healing period will move right along, as expected by your doctors.

You and your family are in my prayers. I'll continue to check caringbridge for updates.

Take care,
Last edited by Janice on Mon Mar 17, 2008 9:34 am, edited 1 time in total.
GOD Bless!

Thoracic: SM T3-T12 / Disc Buldge T7-T9 / Mild Scoliosis
Cervical: SM C2-C6 / DDD / Kyphosis
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Postby sweettartgirl » Mon Mar 17, 2008 9:21 am

thanks everyone so much for your kind words, answers, and stories and of course your thoughts and prayers - they mean the world to me and my faith is what holds me up through this.

Thought you guys would find this interesting. We (ie Dr.B, my mom and I) decided the best thing for my case is to get a PICC line prior to my surgery, so I will be going ahead with that (we just discussed late last night and this morning thorugh email) and so we're seeing about getting it done in NY.

Well 3 hour countdown til I'm admitted, so i'd better get a hoppin!

I hope you all have a great (whatever is great for you) day!

GOd bless,
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Postby kittb » Mon Mar 17, 2008 9:27 am

taking a medical leave of absence from school is the right thing to do! With all that you're going through and are going to go through in the next little while, it is a must! Prayers are with you daily!
If you ever lose yourself, call on me and we'll be lost together-Kitt
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Postby the 4ks » Mon Mar 17, 2008 10:00 am

You are so strong! You have been thru so much!
I will be thinking of you!
the 4ks
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Postby specialmomx2 » Mon Mar 17, 2008 11:34 am


I am so sorry for all you have gone through this year. I sincerely hope the upcoming surgeries are successful and you can start to re-claim your life.

You and your family are in my prayers.

"idiopathic" SM T3-T5 taking 50% of available space. Ehlers-Danlos Syndrome, Cervical stenosis, DDD, metabolic issues including reactive hypoglycemia.

check out my blog:
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Postby Sandy » Mon Mar 17, 2008 1:34 pm

HEy Laura,

I'm so sorry about everything you're going through, but you stay strong girl. My prayers are with you.

Please try to keep us updated. I've been wondering where you were.

love and blessings,
sandy :D
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