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chairi 1 malformation
my daughter has a 12cm tonsil malformation...debilitating symptoms. Got an appointment with Dr. Rekate at Chairi Institute....there are mixed reviews about this surgeon...can anyone advice or offer an alternative. She lives near Hartford CT
It's a journey for all of us - I still think the first part was the worst when we knew so little. Although we don't have many answers right now, I feel confident with the new NS and believe we will have more soon.
Hang in there - sometimes it's hard being the advocate, but as parents we all do it!!
Hang in there - sometimes it's hard being the advocate, but as parents we all do it!!
COMMUNITY LEADER
To ur question about weather- most deff yes, I am a better weather predictor then the weather men...lol...I have often called myself a walking barometer....
My Dr at TCI was Dr Salvatore Insinga...I really liked him, great bedside manor and the detail with which he explained everything....I have not had ne issues with my surgical site, set backs etc....
The problem with the gradings is some expect to end up perfect post op, and sometimes that is not the hand we r dealt....I do still have issues, but I have a few related conditions not yet treated.....but I know my surgery was a successful one.But if I did not know about my related issues, I might just think it failed....some grade the outcome of surgery not knowing all the other things going on and were looking for a fix...and there is none...just a means to restore CSF flow and hopefully lessen the symptoms.
It is best to research Drs by looking at their specialties....meeting them and seeing what they suggest be done and compare them with other Drs of the same caliber.
Thank you SelmaS....we are probably at the right place..Chiari Institute in Long Island...just knowing how important I would move heaven and earth to find the best surgeon. Gradings on line about Doctors are dependent on many factors..which Dr. did you see for your surgery in Long Island?
Bless you as a Mother for caring and being so involved with your son..I wish I had answers for you.
I am still navigating the computer..thanks to all who answered my questions. My daughter is having an MR Venogram..ordered by Dr, Rekate..perhaps this more than the 12mm tonsil and her pressure in lower back of head she says is a pain of '10'. Does any one get incredible pain related to weather fronts..these seem to have gotten worse as the back of the head pain has for my daughter...are they related to the chiari...???
Hi,
my son is now 18, had the surgery when he was almost 16 in Milwaukee. Has been having returning symptoms for awhile now.
One of the big issues we have had is that he was previously diagnosed with migraines. So, whenever a doc sees him, they automatically put it down to migraines. Our last visit to the ER in March this year, with significant neuro symptoms, led to them saying it's migraine headaches.Tests were clear etc... (we now have a NS that is wonderful and knows that although he can't see it, could be scar tissue causing this)
At 18 now, he is very clear with the doctors that this is PRESSURE, not a migraine. He told them he has had migraines and knows the difference now. After we left, he told me that when he was younger he might not have been able to really know the difference when he explained it to doctors (pre surgery) and that he does know now.
For what it is worth, you may want to help your daughter develop words to explain the difference if you can, or help her identify whether it is pressure and where. Or if it is a regular headache or migraine.
My son and I have a pretty standard set of questions now - where is the pain? (back of head and neck we consider to be Chiari related, or if pressure anywhere in head). What type of pain? Pressure, like someone is pushing in or out on his head or neck, stabbing, shooting, tingling, etc....and finally, on a scale of 1 to 10, 10 being worst pain in your life, how bad? this is usually how we determine when to go to ER, etc....
I have kept track of it, taught him how to track it too, so we can remember, especially when it changes daily or more. It helps when we try to explain to the doctors the frequency, severity, duration, etc....
Hope this helps! Good luck !
Sherimom
my son is now 18, had the surgery when he was almost 16 in Milwaukee. Has been having returning symptoms for awhile now.
One of the big issues we have had is that he was previously diagnosed with migraines. So, whenever a doc sees him, they automatically put it down to migraines. Our last visit to the ER in March this year, with significant neuro symptoms, led to them saying it's migraine headaches.Tests were clear etc... (we now have a NS that is wonderful and knows that although he can't see it, could be scar tissue causing this)
At 18 now, he is very clear with the doctors that this is PRESSURE, not a migraine. He told them he has had migraines and knows the difference now. After we left, he told me that when he was younger he might not have been able to really know the difference when he explained it to doctors (pre surgery) and that he does know now.
For what it is worth, you may want to help your daughter develop words to explain the difference if you can, or help her identify whether it is pressure and where. Or if it is a regular headache or migraine.
My son and I have a pretty standard set of questions now - where is the pain? (back of head and neck we consider to be Chiari related, or if pressure anywhere in head). What type of pain? Pressure, like someone is pushing in or out on his head or neck, stabbing, shooting, tingling, etc....and finally, on a scale of 1 to 10, 10 being worst pain in your life, how bad? this is usually how we determine when to go to ER, etc....
I have kept track of it, taught him how to track it too, so we can remember, especially when it changes daily or more. It helps when we try to explain to the doctors the frequency, severity, duration, etc....
Hope this helps! Good luck !
Sherimom
COMMUNITY LEADER
If u look to the list of chiari specialists on the forum, u will find Drs names, this list is compiled by the member of their own dr and is not a referral but a means to help u do research.
I did bump the list up so u should be able to locate it, but if not, scroll to the bottom of this page and use the hyper link for the Health Pages to locate a copy of the same list.
Three is a Dr in Boston , Mass and another one in NYC.....not sure if u have a preference where u go I see u r from VT. Keep in mine, many of us do have to travel and the list is not going to have a dr in each state as it is a list made by our members : )
Other related issues ...dysautonomia and migraine. Dr. Rekate was made aware of these when we spoke with him...he said he had a good chance of addressing the awful pain/pressure that has developed in the back of her head, the awful pain that comes from any type of coughing, sneezing ,exertion or straining...bathroom etc., The problems she experiences when going from lying down to standing...and the change in weather pressure headaches. Her fatigue issues he thought also might then improve . Can any one recommend a Dr. for a second opinion?
Thank you so very much for answering the post I don't feel so alone. From her Mum
Thank you so very much for answering the post I don't feel so alone. From her Mum
bless you for taking the time to answer...more test are needed I presume to locate the obstruction ...I am hoping this is what will happen with Dr. Rekate ....he did not seem to have read all her notes or got all the tests results from her neurologist when we met with him...I guess the next step is to email him and ask about the cf flow test, her neurologist was trying to order a standing MRI....Long Island is one of very few places that do this type of scan....
Thank you and bless you.
Thank you and bless you.
COMMUNITY LEADER
Hi and welcome to the Chiari forum.
Ur DD is very lucky to have a loving and caring parent that is willing to advocate like this for them, u r wonderful to do so, there are many that do not get this support and it is needed, as is talking to those that also have this, so do ask ur DD to join us here, that will help u as she can vent on how she feels.
As for TCI, I had my surgery there just b4 Dr R came to run the place....he came with high credentials. I was well pleased with my surgery .....but we all have to see a few Drs of the same caliber in order to compare what she is being suggested as for treatment options.
And Rahe is right it is not the size of the herniation, but the fact does she have a CSF obstruction or other related issues.
Make sure she has all related issues ruled out.
The length really isn't the biggest issue...more wether or not here CSF is blocked and her symptoms. I heard good things about Dr. Rekate, and was actually planning on seeing him if my NS here didn't work out. I am sure others will have more to say. I know that TCI is very well respected and is "the place" to go for chiari. Are you sure it's 12cm....or is it mm?
Best wishes to you and you and your daughter will be our prayers.
Best wishes to you and you and your daughter will be our prayers.
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