Fusion Surgery??!!??

[godrocksmysocks]

Hello,  I have had tethered cord surgery and decompression surgery by the Chiari Institute in New York and sometime soon (not sure when) I will be having a fusion surgery (c1-c3) by Dr Fraser Henderson in Bethesda Maryland.  I was just wondering if anybody else has ever heard of Dr Henderson or knows anything about him???

[godrocksmysocks]

Wow...it sounds like your daughter does indeed have Instability.  For a long time I described my head feeling that way also. =)

I agree it will be helpful to get a official diagnosis of EDS.

I will re-attempt to post my M.R.I. =)

[youngwife]

From the very beginning, when Rachael was just a scared 12 year old girl, she described her pain as it feeling like her head was a bowling ball, and her neck was a toothpic.  And that the toothpic could not support the bowling ball.  (She is very articulate and bright!)

There have been times since her PFD that she has said that it feels as if some one needs to pull up on my head.  Like it is too heavy for my neck.

I am hopeful that Dr. Wiebe will be willing to consider my scheme, but chances are that insurance will give us the dickens!!!  -.-

I am praying that this geneticist will pick up on the little things about Rachael that, to me, point to EDS...


1.) She has Velvety (I mean like softer than my baby's) skin.  Especially on her hands.

2.) She has trouble with IV's and when blood work is needed.  Her veins head for the hills whenever a needle comes close.

3.) She is just plain floppy.  Many doctors have described her this way.

4.) She had tethered cord, and has been diagnosed with Chiari.

5.) The POTS diagnosis.

Muscle relaxers are murder on her.  A hot shower wipes her OUT.

Not that the label of EDS would fix all of her problems, but just knowing a reason would really be helpful.  Plus, we can look at the options for surgery and such in a different light.

Thanks for sharing your info, and I will look forward to viewing your MRI's.

Blessings,

Rebecca

[godrocksmysocks]

I'm glad I could help you both out. =)  Haha connective tissue issue is fun to say...I have been to see Dr. Frankemono and didn't get too much out of the visit except a letter and learning what type of EDS I have.

Your daughters symptoms do sound kind of like me...except I've never heard of the not being able to lay fat thing...that is interesting.

Have you ever tried pulling her head?  That is something that we helped to figure out that I had instability.  If I lay on a bed so my head is towards the foot and somebody sits at the end in a chair and kind of cups the back of my head around their hands, being really careful not to hook my jaw or ears and pulls (it is very hard to do for the poor person pulling) my sypmtoms are relieved a lot...but when the person lets go they all come back.  You probably won't be able to do this laying down since your daughter can't lay down, it works to if she sits on a low chair, or maybe the floor??  And then have somebody be careful not to hook her ears or anything, but pull up..  I'm not sure if it will help her or make her worse because even some people with instability pulling their head doesn't help.  It's just something that worked/works for me.

Since you can't put the M.R.I's on here I will attempt, (and I mean attempt) to post mine and you can maybe tell me if hers look at all like mine...a long shot I know but I can try. =)

I will keep you and your daughter in my prayers. =)

[selmaS]

Thanks, u also gave me aot of info as well..I was told I may need the fusion, but not sure. I was dx with EDS mobility type....so it cleared up alot for me...slow to heal and the brusing....makes sense now.

Sounds like u did alot of research and I am happy u r here to share it with all of us : )

"selma"

[youngwife]

My daughter is 15.  Her decompression was done by Dr. Michael Rosner in NC.  Her tethered cord release was by Dr. Wiebe in MS.  Both are excellent doctors.  

I strongly suspect that the connective tissue issue (that's fun to say!!) is EDS.  She is scheduled to see a geneticist locally, but I do not hold much hope that it will prove profitable.  I am sure she doesn't fit the clinical definition of EDS that is more commonly used in our area.  I wish so badly that she could Dr. Francomano (sp) in MD, but insurance is not going to go for that one!

When I say pressure spikes, I do mean pressure headaches.  Like praying someone would just drill a hole in her head to release the pressure.  She can feel her pressure elevate.  So, it was RALLY frustrating when a spinal tap done under anesthesia was low.   GRRRR!!!!

However, Dr. Wiebe is not ruling out pressure as a cause.  He recognizes that her symptoms are very "pressure-ish"!!  She can't. lay. flat.  No if and's or but's!!  Her head kills her if she does.  BUT, her body suffers from sleeping propped up!  Its a no win situation for her.

I'd love to compare symptoms and learn more about CCI.  Rachael's most recent MRI's are on plain films, rather than CD.  So, I can't post them.

I've just had this feeling in my gut for quite some time (even before her decompression surgery) that instability was going to be an issue for her.  Maybe it's mother's intuition or pessimism, but I just felt that things weren't going to be easy, and they've not been.  It was great the first four months that she was good.  But, now she is very limited. :(


Thank you for taking time, and I look forward to hearing more about your situation!

Rebecca

[godrocksmysocks]

Hey,
I'm glad I gave you some good info.  It sounds like your daughter may have Instability. =(  Where did she have her tethered cord and decompression?  I

t sounds like a lot of the things that happened to your daughter have happened to me.  Can you explain/describe what you mean by having spikes of high pressure? Do you mean high pressure headaches??  I haven't been diagnosed with POTS but we are pretty sure I have it also.  The unnamed connective tissue disorder is probably Elhers Danlos Syndrome?? That goes hand in hand with Chiari etc and is one of the reasons that people get CCI (instability).  

I have tons of stuff I could tell you about instability..I don't have much "official" information about it, but I know what to look for on a M.R.I..  Does your daughter have recent M.R.I's??  Rather than me telling you all I know about instability (which is to much haha) you can ask me specific questions...is there more "sypmtoms" she has than what you listed above? If so I can tell you if I have some of those symptoms to..

I don't know if you have been to the Chiari Institute or ever hear of Dr. Henderson but you daughter does turn out having this I strongly suggest you go to either place...Dr. Henderson seems to be the guy for instability...but so is New York.

Thanks for the comment about my user name! =) God definitely rocks..and yeah my doctor decision is based on faith and LOTS of prayer. =)

Oh yeah and how old is your daughter?

[youngwife]

Hey there!

You've given me great info!!  My daughter has also had TC and PFD, and I am very worried that her problem is instability.  

Can you give me some more info on this??

These are the things that make me suspicious....

1.) Rachael was great until a chiro adjusted her neck for shoulder pain (unsolicited adjustment).  When he did, her vision rattled, and her symptoms returned for good. :(

2.)Rachael is worse if she sleeps in an odd position or not on the right pillow.  REALLY worse!

3.)Migraine meds are not helping. -.-

4.)Rachael is having spikes of high pressure, however a spinal tap did not reveal high pressure...so frustrating!

5.)Rachael has been diagnosed with POTS and an unnamed connective tissue disorder.

6.)Rachael can not move her neck any way she wants.  She must move very gingerly.  Car riding is still a challenge for her.

Oh, and I wanted to say that I love your username!!  God rocks for sure!!  He is awesome.  And I think that your decision of doctors is based on faith, and will prove to be the best.  

May the Lord bless you!

Rebecca

[godrocksmysocks]

Hi, thanks for welcoming me.

I don't mind if you ask at all about y I'm not going to TCI for fusion.  Just so you know...it is not because of all the media junk that happened this spring. I absolutely LOVE TCI and a few months ago couldn't imagine going anywhere else.  Dr. B is willing to do the fusion surgery on me (as is Dr. Henderson).  The reason we aren't going to Dr. B is because they do a few main things differently with the fusion surgery.  Dr. B focuses more on traction and jacking the head up where Dr. Henderson focuses on the angle.  After looking at it from all possible directions we (my family and me) feel that  Dr. Henderson and his way of doing this surgery is the best.  Another thing that helped us decide is that he claims that "it is not him doing these surgeries, it is God."  So that's excellent!!  Also he has been doing these fusion surgeries for over 15 years (mostly on older people with arthritis i believe) and he says that in ALL the time he has done these surgeries every outcome has been great except ONE!!!!

As for my instability...it's really bad, I will only be fused to c3 though so that's good.  My sypmtombs are horrible, I have constant headache, double vision, can't swallow pills, fatique, can't sleep at night...ect...  

My fusion isn't planned yet because we are waiting to hear back from scheduling on Dr. Henderson, but we plan to do it soon. (this fall/winter)

Wow this got long...sorry how long it is. :)

[selmaS]

Hi and welcome to the Chiari forum.

Sorry, I have not heard of this dr, but I too had surgery at TCI in NY.....PFD, and am waiting on TC until my next visit in Dec......

May I ask y, TCI isn't doing the fusion?

How bad is ur instability that u require this fusion....I know a little about it, but wonder what ur experience with it has been.

When is ur fusion planned?

"selma"