Spinal fluid and CM after TCS surgery

[angie343]

Hello everyone. My 20 year old had TC surgery done on 3/25
By Dr. Bolognese from TCI in NY he is a great nuerosurgen. We live in FL my concern
Is that she is having chronic headaches, another nuerosurgen diagnosed her with migraines and said her chiari is 6mm not a call for another surgery. I guess we should feel some relief in that. She also has the CSF collection by the surgery area, the nuerosurgen in Florida said not to worry it will go away on it's own. She is also showing some of her  old symtoms again, (bladder issue, balance is not too good) the terrible headaches and blurred vision, she can walk alittle but with a walker and only for short short periods. My question to you all is there anyone out there that has had a similar case as my daughter? If so would another doctor help with another doctors surgery because so far it is looking like we will have to go back to NY for Dr. B, which we do not mind buy I worry for my daughter and the traveling. Thank you all.    

[selmaS]

HI Angie, my DD is 24....it all goes sooooooo fast, huh???

.....I have chiari and TC and I was told TC should be done first, but there is a chance that I will also need the decompression.It sounds like everything was done the way it was needed to be.....unfortunatly her chiari is causing her just as much distress as the TC did.

There is nothing that will make us 100% better, there is no cure....only treatment to help us feel better.

"selma"

[angie343]

Hey selmaS how old is your DD. Thanks for the nice compliment on my name:)

[angie343]

I was not told about her Chiari until we had an MRI done in the Cleveland Clinic in Florida. That is another reason why we need to go back to NY because Dr. B specialist in that. I never knew of these two birth defects until alittle over a month ago. My daughter never had any symtoms until she was 171/2 years old and back then the doctors here in FL kept telling us she had a bulging disk. They wanted to treat her with steroid shots and even advised of possible disc herniation surgery, well I thank god that we decided to wait on the two options we were being offered because they would have had a nice law suit going on right now. So we decided to take the PT and pain meds and by the stength of god, that is how she got through the pain for a couple of years. Then I send her to NY for school and all her symtoms start coming back but with bladder problems now. Her legs gave out at her dr office in NY and she was taking to Nassau University and that were a very nice nuerosurgeon spoke to us about her having tethered cord and bought in Dr B. They did an emergency operation bc she was in so much pain and urinating promblem, numb at both legs. The nuerosurgeon in NY did tell us that her spinal cord at the base at back of her head was lower than what it should be for someone her age, I guess that was the Chiari. Her joints, thank god have not been an issue and I pray they don't. Her left leg and between the knee and ankle is what is giving her problems right now with some tingling.

[selmaS]

Hi Angie,

I know Dr B is in Italy......didn't she have the chiari prior to the TC surgery....bcuz I had my chiari dx almost a full yr b4 my TC dx.

EDS is Ehlers -Danlos  Snydrome it is a connective tissue disorder.......the patient has loose flexible velvet like skin....and the joints are hyperflexible.The joints may pop in and out of joint causing pain.It would appear the person is double jointed, but it is far more.

There are many diff types of EDS.

By the way , I like ur name so much I gave it to my DD. :  )

"selma"

[angie343]

Hey Selma
I am not sure what EDS is. The doc on FL said she has Chiari, and her symtoms could be from the chronic headaches. I think he does not want to touch her since he did not preform the surgery. We sent my daughters lastest MRI to TCI but dr. B is out of town and my daughter spoke to Dr. I and he told her she needs to see Dr B when he gets back because she may have something else happening, he did not say what it may be, just to follow up with dr b

[selmaS]

Hi Angie and welcome to the Chiari forum.

I am actually scheduled for the TC surgery in NY.....and I was told it is possible that I amy need the decompression and it will not be known until after the surgery.

Do u know, since ur DD has TC does she also have EDS...it seems the 2 conditions go hand in hand.

Have u consulted Dr B to see what he says??.....I met with Dr Insinga...not Dr B and have no idea which will be doing the surgery....I only know I need relief from my bowel and bladder issues.

Dr Insinnga was clear that I may be looking at 2 more surgeries....the decompression and a fusion bcuz of cranial instability.

Do u know if ne of this could be why ur DD is having her symptoms??

"selma"