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Postby YLAURIE » Fri Jun 01, 2007 12:24 am

Hi! I am not new here. But this is my first post. I have been lurker for months. I was diagnosed with a thorasic syrinx in Oct. In Dec, I had a Cine MRI and was told I had Chiari 1. The rest of my story is here,

I am posting today because i have found so much information from your posts here, everytime I'm worried about something I look an here and I can find answers to questions that have been running through my mind. Right now I am very stressed out. I am having surgery at The Chiari Institute in New York on June 19th for tethered cord. I am so worried. I can't sleep, it's all I think about.. Any advise? Any stories? What to expect? I don't wish this on anyone, but it would be nice to know someone has been through this before and can give me some advice? Thanks in advance.

Laurie
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Postby YLAURIE » Fri Jun 01, 2007 12:25 am

I forgot the link to my blog

http://laurieyeh.blogspot.com/

Laurie
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Postby cash71 » Fri Jun 01, 2007 10:19 am

Hi Laurie,

I'm glad that you finally came forward to post. Sounds like you have had a long road here (like many of us) and I am so glad that you found your way to TCI. If anyone can help, they can. Know that you are in the best possible hands. I myself am going to TCI on June 25 for my first assessment. I can hardly wait to get some real answers and some kind of a plan together. I'm travelling a long way to get there because I believe they are the best people to put all the pieces of my puzzle together and reading your story on you blog confirms this. Sounds like they put all of your pieces together too. So as scarey as it is, at least now you know your enemy and can begin to take steps to get back to health and wellness.

I have not had surgery yet so I don't have any words of advice in that regard but I wish you all the best for your surgery. The Lord most definately was watching out for you when he brought you to TCI and he will bring you thru your surgery too.

Bye for now,

Caroline
Be kind for everyone you meet is fighting a harder battle (Plato)

Syrinx C3-T9, CM zero, OTC, cranial settling, dysautonomia/POTS, and ?EDS

see my blog for more info: http://www.chiariandsyringomyeliaincanada.blogspot.com/
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Postby Snoozie » Fri Jun 01, 2007 11:00 am

Hi Laurie, welcome and glad you came out of lurking.

Good to see that you are going to TCI, they are supposed to be the best from what I have read here.

I have a question though, did you have MRI's locally and not get the tethered cord diagnosis? What I am asking is did it take TCI to see it on your films?

I have alot of the signs of it yet it was not mentioned on the report nor could I even know what to look for on the films. My son also has alot of the signs from spina bifida, to a mark on his lower back, pain in his legs...you get the picture.

We have not gone for our follow up with my son yet so I don't know what the report says on him. I just wanted to know any questions I should ask for when we do go. Healthcare here is not the greatest so it is usually hit or miss.

Welcome to our group...Sue
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Roz

Postby Snoozie » Fri Jun 01, 2007 11:04 am

I just went to your blog and saw a comment from Roz asking why would you go to TCI?

Roz, I thought they were the place we wanted to go for the best care. I don't understand why you would say that. Do you know something I don't know? Sue :?
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Postby melanie » Fri Jun 01, 2007 1:11 pm

hi,
hope you dont mind me looking at your blog,I found it most helpful,Iam scheduled for a tilt test on june 23rd,in the last 6 weeks I have had 6 drop attacks,breaking my right hand in one,so I found your article on POTS most interesting,my pcp thought it was neuro,neuro thinks its cardio,trust me I just want answers.
I dont have tethered cord ,but I have had 5 decompression surgeries and been shunted and have sm-c3-t8 and acm1 ,I wish you the best of luck for your up coming surgery.
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Postby YLAURIE » Fri Jun 01, 2007 1:58 pm

Hi, Everyone! Thanks for the welcomes and well wishes.

I did send my MRI's to TCI that I had done here in VA, they were not even 6 months old, I even had a Cine MRI, TCI called saying the quality was poor, and I had to have everything redone when I went for my consultation in APRIL 2007. TCI did find the tethered cord, they also found the retroflex odontiod, they diagnosed me with EDS, and cranio-cervical instability. When I had my MRI's done locally in OCT- DEC 2006 I was found to have a thorasic syrinx from t-5-t-11, chiari 1, 5mm herniation, herniated disks at t-8-t-9 I also have been diagnosed with tendonitis, early onset arthritis and POTS. All of this is in my blog but I thought I would put it here for anyone that doesnt read it. I am only 31 year old and a mother of 3 young boys. As you all know it's a tough thing to live with.


Melenie, of course I dont mind you looking at my blog I posted it here hoping to find someone who understands what I'm going through. I totally understand the neuro, cardio, thing when it comes to POTS. I see both and they never know who I should see for my symptoms and my cardiologist and neurologists are friends. Dr B. at TCI said my POTS symptoms are from my brainstem beong pulled fromed the tethered cord and pushed from the chiari and retroflex odontoid. Right now I'm taking atenolol 50mg and it is helping my symptoms. I also stay hydrated. But now with the weather warming up I'm noticing more pots symptoms, ans no matter what I try it never goes away.

Snoozie, Dr. B told me to keep a close eye on my sons for symptoms of tethered cord one thing he said to watch for was lower back pain. He said low back pain should be a symtom in the older population and should not effect childen. Also bladder problems.

I answered Rozs question in a PM I think TCI was the best place for me and through my reserch and my experience so far with the doctors I have seen they are the best so that is where I choose to go for my care.

I hope everyone is well and having a great day. Take Care

Laurie
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Postby razzle51 » Fri Jun 01, 2007 2:21 pm

If you read the comment again . I simply asked why TCI and if there was a Chiari expert in her area . Maybe to help with costs etc. If there wasnt then TCI would be fine.
I choose not to place "DIS" in my ability.

There is a light at the end of every tunnel....just pray it's not a train!.

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Postby Sandy » Fri Jun 01, 2007 2:29 pm

Some people who have gone to TCI for surgeries have found it impossible to find local physicians willing to treat them upon their return home, and weren't informed of that pre-surgery.

That could pose a legitimate problem for me. I live in ARkansas and there is no way I could travel to NYC for check-ups and treatments, small problems, or just overall care.

I'm not saying the peole should not go to TCI, but follow-up care seems to be an area that is not addressed to my satisfaction, and this is only from what I've read from others who have had surgery there.

love,
sandy :D

Welcome! I also have a thoracic syrinx.
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Postby Debster » Fri Jun 01, 2007 3:15 pm

Hi Laurie,

I am glad you have found answers to the life long pain and medical issues you have faced. It is my hope to also go to TCI since a MRI revealed I have ACM-1 as well. The MRI was ordered after 5-6 years of ear problems I have been having.

The funny thing is that the ENT I had been seeing for my ear issues refused to order an MRI for the 5-6 years I was seeing him because he said there was nothing wrong with me, and the MRI would come back with no problems because I don't have any. Guess I proved him wrong!

My husband and I are trying to figure out how we can afford to get me to TCI. I can totally understand about the bills piling up. A friend of mine told me medical issues are the #1 cause of bankruptcy in our country.

Like you, I have 2 young boys. It's hard for them to understand that we can't afford to do some of the fun things their friends do because we are struggling to keep our heads above water.

I can understand your presurgical jitters. I think it is understandable, and completely normal. Have you inquired if there is any medication they can give you to settle the anxiety until you have surgery. It's just a thought.

Good luck, and please keep us posted!

Deb
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Postby kiminfla » Fri Jun 01, 2007 4:36 pm

Hi Laurie, Welcome to the board! Prayers for your surgery. 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 YLAURIE » Sat Jun 02, 2007 11:18 pm

Hi Again!

Debster, That is too funny that you mention the ENT thing. I was seen by an ENT doc 5 years ago or so for constant earaches, sore throats and just feeling like I had a lump in my throat. Of course at that time I didn't think any of that had to do with what is going on now. After seeing him for a few months I ended up going scuba diving with a class, we were on our second dive in the East China Sea and my eardrum ruptured, I felt this intense pressure in my head and in my ears, I went up out of the water on my own. I had to get out. I thought my head was going to burst. We were 60 feet down. Anyone that has scuba dives knows you should not do this. You need to go up slowly. Anyway now I'm thinking all of the pain and pressure I felt that day must have something to do with all of my medical problems that I did not know I had. I do still have some ear pain and sore throats but not as bad, after seeing the ENT for 6 months or so he removed my tonsils because I felt like I could actually feel myself swallowing what felt like a rock in my throat, I was convinced it was my tonsils. I woke up from surgery and I still felt it. I now know its from the Chiari and retroflex odontoid.

I also understand about not being able to afford to do as many fun things with the kids, it's tough for them. They want to do everything their friends are doing, and have all the new coolest toys. My husband has what is considered a good paying job with good health insurance in DC and we are having a tough time. My 8 year old is always coming up with ways to help us raise money, it's so sweet but not really how the world works.

And for the medication to help calm my anxiety, I am on Cymbalta for other reasons besides depression, I'm not really sure if its for anxiety I do have a Dr appt Tues. maybe I will ask.

Also Thank You for the PM's and prayers I appreciate them all.

Laurie
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Postby Gracie Rose » Sun Jun 03, 2007 8:28 pm

I am a patient at TCI and have had a decompression, fusion, detethering. I have EDS and had a retroflexed odontoid too. We have 8 children with 5 so far with ACM, 1 with SM, several with tethered cord and all with EDS. We are frequent flyers in the brain business!! :D

The care at TCI is awesome but as you know it's a busy place. My care was great, the surgeries were successful, but not without hard times and some tears.

Being the mommy of children with medical issues is one thing but being the patient yourself is a whole new ballgame. Even though this is all so difficult, there are huge blessings to be found too. It really teaches a spirit of service in the family and charity that many kids just don't experience. I have shed many tears in this area only to find out no one minds helping. Accepting help is MUCH harder than giving it. I try to be cheerful as this is contagious. I tell my husband and children all the time that I am here and okay because of their service to me. I do say also, I wish I was my old self but that reality is reality, and this is what God has seen fit to happen.

There is so much to the whole ACM/EDS RO/TC story and it continues to unfold. I think you'll be happy with the results. Do not however underestimate the emotional/psychological waves you WILL ride. I had two special ACM ladies who were there for me through it all and they were so good to me. You'll find many kindred spirits among the folks on this and the Chiariconnection boards.

To give you some concrete numbers, Out of about 30 symptoms, 26 are gone. The ones remaining are not debilitating. However, you will have to learn not to over-do or you will have a resumption of symptoms. That's the hardest part for me, because I used to be a chronic over-doer.

Good Luck to you,

Lisa
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Postby YLAURIE » Sun Jun 10, 2007 12:36 am

Hello Again,

Lisa,
Thank you for the information. I'm sure it has been hard on your family with the diagnoses you, and the children have had. You seem so positive. I guess I am the same way, I know I have to deal with what I am dealt. I have been worried much more of course, because of my upcoming surgery, and because of the confirmed EDS diagnosis. I am also now very worried about my 3 boys. Dr. Francomano wants me to bring them in after things settle down a bit for us.

Yes, I am finding their are many caring, supportive people here on this and some other websites. I'm glad I finally decited to post. I did feel like I was all alone in this. The response has been great! I really needed that right now.

I'm happy to hear many of your symptoms are gone. I am hoping that will be the case with my surgery. I will be finding out soon. 10 more days to go.

Well I should be going it's 1:32 a.m here. I need to drag my butt to bed. I hope you all are well.
Laurie
http://laurieyeh.blogspot.com/
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