Here and back again
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September 27, 2008 at 3:42 pm
I’ve been spending time on another Discussion board but find myself coming back here to check in on everybody.
After 4 years of not getting better, like the Dr.s tell us we will…I decided to take the summer to see if I could get any answers. I was referred to UW Research Hosp. in Madison, Wis. At my first appointment with the Neurologist, who by the way, was very educated on GBS, he ordered the first set of tests but insinuated he thought my issues were more central nervous system than peripheral.
Fast forward…many more tests, and I have seen a neurosurgeon twice. I have something called Chiari 1 Malformation. It has many similar symptoms to GBS but is an entirely different disease. So I have been scheduled for brain surgery on Nov. 7th. Needless to say, I’m more than a little nervous about this type of surgery with a past in GBS. But it is necessary and may stop the progression of symptoms and perhaps allow my to regain some strength.
Very scary stuff, but at least I have a reason for whats been going on. So I’ve been hanging out in a Chiari Discussion forum and trying to grasp what’s going to happen next.
As I said before, I find myself clicking back to all of you who I still and always will feel as family.
Wish me luck, good health to all of you…not leaving, just checking in. -
September 27, 2008 at 4:52 pm
My fingers and toes are crossed for good results for you, JayDee. You are in my Thoughts and Prayers!!!!:) No matter what, you know you are still Family!!:cool:
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September 27, 2008 at 5:35 pm
JayDee, thoughts and prayers go out to you. Be well. Best of luck with your surgery in Nov. Please keep us posted. I am not familiar with Chiari so am going to check that out!
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September 27, 2008 at 6:35 pm
JayDee, I just read about Chiari 1 Malformation. I wish you a successful surgery with continued good recovery.
Good luck and prayers
Shirley -
September 27, 2008 at 9:21 pm
Good Luck and Best wishes JayDee!!!
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September 27, 2008 at 9:49 pm
If you do not mind, will you post or send me a link to the Chiari discussion group. One of the young ladies that comes to our hospital for care has just been diagnosed with this and is to have surgery in early October and she is scared and would like more info. Thanks, WithHope
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September 28, 2008 at 11:51 am
Thanks everybody, for the well wishes.
WithHope, the site I have found most useful is [url]www.asap.org/forum[/url]
Where will your friend be having the surgery? As with GBS/CIDP be sure she sees a Neurologist who has a background in this area.
I would be more than happy to communicate with her via e-mail if she would like. I’ve learned a lot in the last 3 months. -
September 29, 2008 at 7:19 am
JayDee,
I was diagnosed with the Chiari I but they told me it’s not causing any probs.
Sometimes I wonder, especially b/c of my issues with balance. I have to believe they know what they are talking about.good luck with surgery !
Stacey
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September 29, 2008 at 9:15 am
Stacey, have you seen a neuro that has a good background experience in Chiari. Where are you from? I’ve picked up on several areas that have good Dr.s informed about Chiari. The medical field is so specialized anymore, but it makes it harder for the patient to find someone who is open to looking at other angles. We have all found that out with GBS, which I later found was the reason I was not getting any answers with what I assumed were residuals. A really good neuro will know what to look for and what tests to run to see if Chiari is causing some of your problems.
Good Luck, -
September 29, 2008 at 2:30 pm
JayDee-wishing you all my best, praying for you and sending you a really big hug!!!!!! I am on my way to Univ. of Michigan hospital today to see the head of the neuromuscular dep’t. to see what’s going on besides CIDP. We cruise along struggling with an initial dx. and then it all changes. I sincerely hope your surgery Nov.7 is a success. We’re not letting you go as family, so you gotta stay in touch.:D
Emma -
September 29, 2008 at 2:44 pm
Emma, once a GBSer, always a GBSer! Unfortunately…
So I continue to check in here often. Besides, I have to keep track of how you all are doing and who I need to be praying for.
Good luck in Michigan. I truly believe these research/teaching hospitals do a better job and dig deeper for answers.
Let me know what you find out. -
September 29, 2008 at 3:59 pm
Hi JayDee,
They did an MRI on my cervical spine and found the CHIARI. I took the results to my nuero and he sent me to a nuerosurgeon. The surgeon didnt even look me over and said its not symptomatic so dont worry. I often wonder why I never had an MRI on my brain, too. But, the last thing I want is to go fishin around and finding something ELSE !
I live in Omaha, NE…right smack in the middle of the country. Cow country and corn fields. However, I live in a big city that is ever growing and filling up with crime by the minute.hope your day is good.
Stacey
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September 29, 2008 at 4:01 pm
ps.
If you can offer any dr’s in my area, that would be great ! I’d like to get any further testing in before the end of the year.
thanks again,
Stacey -
September 29, 2008 at 4:12 pm
Emma, check out ASAP.org/forums. There is someone who goes by Roz. She seems to be the go-to person for knowing where all the specialists, and good ones, are. I’ve been reading many posts and could tell you the Doc’s whose names keep popping up in the Chiari sites, but Roz could be more specific.
Once you have your MRI of the brain and c-spine you can send the CD to most of these research hospitals and they will let you know if they agree with your Dr.s findings . Again, contact Roz, I think her post name is Razzle if you can’t find her under Roz.
Let me know if you have trouble, I’ll check it out.
Interesting that we both started out with something so rare, and now have the same (also rare) disease tacked on to the first. -
September 29, 2008 at 4:14 pm
Oops, the previous post was intended for “Stacey”, not Emma.
Didn’t want to confuse anybody, since I am confused enough for us all. -
October 3, 2008 at 6:10 pm
JayDee-I wrote in my thread in main forum-second opinion-lots of changes, but so far, nothing added–gobs of blood taken–who knows, and I wonder why my hemoblobin has dropped-6 vials then two weeks later 7 vials. You can keep me in your prayers- still have to get through an abdominal cat scan.
Have you in my prayers. Only one more month to go and then you will have relief.Take care.:)
Emma -
October 4, 2008 at 4:11 pm
Hi Jaydee! Bless your heart! I hope the surgery goes well for you and get’s you feeling better again. So glad they found a diagnoses for you and hope they can correct it! But hate that you were diagnosed with this. I wish you my best of luck and hope all goes well! Will keep you in my thoughts and prayers! Big cyber hug heading your way! 😉
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