Newley Diagonised

[chriss130]

I was diagonised in September 10. My problems started on 13th of Feburary. I was at home and went to bed, it felt like my throat was closing, I could not swallow. Of course all I could do was panic, I got up and calmed down. The next day, I had real bad shoulder pain. That evening my face, left arm and leg went numb. I thought I was having a heart attack. I went to the er and everything was normal. They kept me over night. I went to my family doctor and he sent me to a heart doctor. The heart doctor was more concerned with what was wrong than my family doctor. I was sent for several MRI and that is when they found the Chiari type II malformation and the Cervical Spndylosis. I have numbness all along my left side, my face, neck. I have buring pain in my bottom lip and across the middle of my back, loss of balance, slurred speech, I run in to walls and door jams.I have rining in my ears. My vision is becoming blurred. My husband is pretty supportive of me, the only thing I hate is he makes fun of the way I talk at times, it is like I can't form the sentence and it comes out all wrong. I seem to have problems with hearing, and I had perfect hearing not two years ago, when I had a hearing test done.  I have an appointment on the 19th of January in Great Neck, New York. My neurologist and neurosurgeon both told me that there was nothing they could do for me. I went to a RA specialst and he is the one that told me to go to New York. I am now taking Lyrica three times a day. It seems to not be working as good as it was at the first. I have noticed thru my reading on this fourm that most of the people started having symptoms after having some kind of injury or accident. My just started one day for no reason. My question is I am going to see Dr. Kula and Dr. Bolongese on the 24th of January, has anyone went to these two doctors. I live in Texas, so I am traveling quite a distance to see these doctors. I don't know if the blurred vision is from the meds or if it caused by the Chiari. Sorry for going on. Thanks for listening to me.

[chriss130]

I long story short. I was sent to a Heart doctor back in Feb 09, out of all the doctors that I have seen since Feb, he is the only one that seems worried about what is wrong. He sent me to a Rheumatoid Arthritis doctor, the RA doctor is the one that told me about New York. He told me to make sure that I do not have any of the neurosurgeons do the operating on me here, so that is why I chose New York. Whatever happens, if I have to have surgery or not, I will be traveling to another doctor. My neurologist told me back in November that she did not know what is wrong or how to fix it, so here take these Lyrica and come back in December and see me. I got the phone call from New York the day before Thanksgiving about my appointments. So needless to say I canceled my appointment for December. No matter what, I will have to find me other doctors, because the ones that I have here are not helping me. My GP, he don't even like to give results of test, and if I want the results I have to make an appointment and pay him to tell me what is wrong. The real sad thing is all 5 of my doctors have all the same medical records that I have, all they have to do is look at them and see what is wrong. No here just wants or knows how to do anything for it. The neurosurgeon sent me for Physical Therapy, I was supposed to go 3 times a week for 6 weeks. I went 3 times, the last time I walked out of PT I was in tears, and told my husband that I would not go back for any appointments. I don't know how far I will have to travel to find another doctor, either to Oklahoma City or Dallas, I will have to see what happens.

[jvilletina2]

I live in Austin, TX. I was diagnosed with Chiari 1/09, from an MRI I had done for migraines. No bad symptoms til 3/09, then rapid onset til surgery here in Austin, 6/09. Highly regarded NS was not technically a Chiari specialist, but he does decompressions 4-6 per month. I've had good relief from most symptoms.
Just wanted to let u know that you may not need to travel so far ...
I hope I'm not complicating things by telling u this. I'm not suggesting you don't go to NY, just letting u know options if travel/money are issues.
Keep coming back to this site, lots of great, supportive people.

[chriss130]

Thanks for your help and encourgement. It means a lot to people.


Kristi

[selmaS]

Well if I can get to my DD's I will let u know...but we r expecting snow again tomorrow and again next week...who knows if that will happen or how much, but since I do not drive it is hard to get up there.

I am home alone most of the time too, so I know how u feel.....but, u can always find a friend on here : )

Just take things slowly one day at a time....it will all fall into place.

"selma"

[chriss130]

We are leaving Texas Panhandle on the 19th of January and we are flying back home on the 26th of January. On the 21st I have all the testing that they do, then I have appointments with the doctors on the 24th. We have Saturday, Sunday and Tuesday off. I have never been to New York so I am hoping that we can do a little sight seeing while we are there. I am so tired of feeling the way that I do and not really understanding about all of the problems. I am home alone most of the time, so there are times that I get scared because of the symptoms. I am just so ready to find some one that will listen to me and help me.



Kristi

[selmaS]

How long will u be in NY...or should I say on Long Island?.....it can get pretty snowed in out there.....If I was able to meet up with u I would, but with the winter weather it is very doubtful...my DD lives in Manhattan which is a good 30 to 45 mins depending on traffic away from TCI.....

I hope all goes well for u....I really liked the drs up there and hope u do as well.

"selma"

[chriss130]

Thanks for you answers about the doctors. They sent me a package. The lady that called to set the appointments she told me about the Variety House and said that she made reservations I will just have to follow up. I am ready to get there and see if they can fix it or something.

Kristi

[selmaS]

Hi and welcome to the Chiari forum.

Yes, I saw Dr  Kula and meet Dr Bolognesse, but Dr B did not do my surgery Dr Insinga did, but Dr B was in the OR doing doplar mapping.

TCI is a great group of drs and I am well pleased with my experience there.

Did u get info to stay at Variety House?...it is very close to the Hospital, but right around the corner from the office.....they offer lower rates for overnight visits.....the person u called at TCI to scheduled ur appointment should be able to get u the info for it.

As for starting with out an accident...u could have coughed hard and started it...or triggered it to get worse, as I am sure u have had symptoms on and off  for yrs and just were not aware and most likely assumed they were the result of something else.....

Please keep us posted on ur visit

"selma"

[hdavids]

Hi and welcome to the Chiari forum

I really cant answer your question about these Dr´s but I am sure selmaS can and others here have experience with TCI ( that´s where your going right?)
Just wanted to say welcome and I am sorry that you are suffering.

Hdav