Cleveland Clinic?

#1

Does anyone know about the Cleveland Clinic Center for Spine Health
which treat Chiari - has anyone been there and can you tell me more
about it?

I would rather go to the Chiari Institute in NY, but my husband is
thinking differently.

I called the Chiari Institute and they have emailed me paperwork to
fill out, which I did and sent it in to them along with my MRIs and
scans, but my husband now is saying he doesn’t want me to go to New
York because it is out of state and he is concerned about cost as
well as my safety.

He looked online and saw that Cleveland Clinic has a center that
treats Chiari (he found this on his own) and is telling me he wants
me to go there for diagnosis and treatment because it is in our
state (Ohio).

But I have a free flight available, and two of the neurologists at
the Chiari Clinic are in my insurance network with United
HealthCare, and UHC is paying for all in-network treatment for me
right now through December 31 due to having a high deductible
insurance plan, on which I have met the deductible for 2007. I’ve
been trying to explain to my husband that at TCI it might be a
better quality of examination because of the equipment they have
available as well as the expertise they have in diagnosing Chiari,
but so far he remains set on the Cleveland Clinic.

I will go to Cleveland, I am just nervous about going there and then
still eventually having to go to TCI anyway, if Cleveland Clinic is
not helpful.

I suppose I could go to Cleveland and just give it a try, and see if
they help me or not. I want to do the right and best thing, but
this is confusing me right now.

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#2

Hello,

My name is Beth. My husband and I took our 2 yo son to the Cleveland Clinic and we would do it all over again. :slight_smile: His neurosurgeon, Dr.Xiao Di, is the best.

He invented the minimally invasive endoscopic surgery for chiari. My son was #106 to have it done. I would reccommend the CC to anyone. Dr.Di’s number is 216-444-5747, his nurse, Jenny, is very helpful… I have cried on the phone with her several times. :slight_smile: I checked into the CI in NY as well and was not nearly as impressed as I was with the CC… take a look for yourself and you will see and feel the difference. I also have a problem with the way the CI demands payment up front and then it is up to your ins. co ro re-imburse you… our ins. covered a few of the doctors and procedures, but you still have to pay alot of money up front, and hope for reimbursement.

I do not know any other true medical facility that does it that way… it made me skeptical… I hope this helps… Like I said, we would trust Dr.Di with our son’s life again, although, we don’t think we will need to :slight_smile:

Good luck, I know it is scary!

Beth

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#3

I went to the Chiari Institute and they are very thorough and
qualified. They do not take most insurance (having patients covered as
Out of Network), so if your insurance will cover it - it would be
beneficial to go to TCI. There is also a large Yahoo Group that is
dedicated to Chiari - and you may want to join and ask these questions
there as there may be more people who have experience. Surgery will
help many of the symptoms (my decompression surgery cured me of the
swallowing and breathing problems), however, it is not a cure-all. It
is important to find a good doctor who knows all the ins and outs -
and helps you get back to normal life.

Take care.

Lorene

On Oct 31, 2007, at 1:37 PM, juleni wrote:

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#5

Thank you both for your insights! I will call Dr. Di’s office, and will also call TCI and keep comparing. I appreciate your responses!

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#6

No problem, I know it is scary and confusing… let me know what happens! :slight_smile:

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#7

Hello!

Just wondering what happened?How do you feel???

I hope you’re doing ok :slight_smile:

Beth

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#8

Beth,

I am sorry for not getting in touch sooner. I spent 13 days in the hospital
and now am home on bed rest. I have another surgery planned for this Monday
to help reduce the swelling from the brain. I am on IV Antibiotics for an
infection in my spinal cord and will be on them for the next 11 weeks.
Basically I am falling apart.

I was doing so well then I guess I hit a wall and everything is crashing
down.

I am sorry we were not able to meet. I hope you all have a great
Thanksgiving and good Holidays.

Best Regards,

Tracy

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#9

HI, I am so sorry to hear that you are not feeling well. Where did you end up going for the surgery? Who is your doctor?

I hope you have a happy thanksgiving, too!

Beth

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#10

Hi all,

I did end up going to TCI, but with a promise to my family that I would only let them diagnose me, and not go for any operations through them, at least not at this time. As it turned out, they did not suggest any surgery. Here is my report:

I am very tired, but I want to just say, it was a success; I received answers that I needed after several doctors at home had done nothing for me but diagnose me with fibromyalgia.

I have intracranial hypertension - raised CSF pressure throughout the head and spine. It may be due to a blood vessel in the brain that is not properly draining blood from my brain. As a result, my brain is swelling and being pressed out of the foramen magnum (sp?) at the bottom. As a result of that, I have a 4mm tonsillar herniation - like a mild Chiari, yet not Chiari Malformation Type I, because I do not have a small skull, which goes with CMI - this is all what Dr. Bolognese told me. I have a normal sized skull, but a swollen brain, and so my brain was being pressed out of the skull. Also, my pituitary glad is being squashed flat (‘empty sella’ - something to google), and my ventricles are small. All from pressure in my head.

On top of that, I had a spinal tap on July 27, and comparing the MRI from before the Spinal Tap to the MRI done at Manhasset Diagnostics on the workday before my appointment at TCI, my tonsillar herniation worsened - it got dragged downwards further. This was due to the spinal tap being done without radiology, and by the technician going in blind, when doing the spinal tap. He stabbed me more than once, which created a CSF leak, and the leak created a vacuum, which dragged my cerebellum downward to tonsillate and herniate further.

So, what they have to do is reduce my CSF pressure (to help out my cerebellum, my pituitary glad and my ventricles), which would usually be done with Diamox, but I have an allergy to Diamox, so they want my doctor to prescribe lasix, a diuretic, at 10 mg every other day. A very low dosage, because my blood pressure is good - almost normally low - and a higher dosage of lasix would make me ill. They want my doctor at home to monitor me with blood tests each month while taking the lasix. If the lasix does not work, I would have to have monthly spinal taps, but under radiography so that no leaks occurred, which would cause my tonsils to herniate even more. Spinal taps of 30 ccs for a few months have been proven to cause the body to eventually regulate itself - for some reason not known - so that CSF pressure becomes normal. However, if spinal taps caused further complications for me - ‘spinal headaches’ like I had before (you can google that term) - then the third step would be to install a shunt into me. But a lumbar (lower back) shunt is contraindicated because it would pull my tonsils down possibly from 4mm to 10mm. So possibly a shunt in my head could be used - even there, there are risks though because I have small ventricles, as small as the shunt itself, not like regular ventricles.

My tonsillar herniation (I hesitate to call it chiari) is not at this time blocking the CSF flow, either behind or in front, so Dr. B. recommended no surgery, even though my pressure is in the high 20’s (28) and he said that in the high 20’s they do start to think about doing surgery, but he wants to stay with conservative treatment for me. He I should try the most conservative treatment for at least 6 months - before even considering a shunt, much less surgery. If it were anyone but Dr. B himself, I would have run to TCI for a second opinion. But it was Dr. B., and so I fully trust his judgement. I have seen all of his videos and know there is more than enough reason to believe he knows exactly what he is talking about, and that being conservative is the best idea. I thanked him and told him that many others thank him too, for all he is doing for us!

It’s a bit scary to me (my diagnosis)… but Dr. B. was so great, so funny and kind. Dr. Mora was kind, too, but mostly just told me postural exercises to increase my head stability and relieve muscle tension. After I saw Dr. Mora, before I saw Dr. Bolognese, I was a bit confused as to if anything was wrong with me at all. But I told myself that there is a difference between a Neurologist and a Neurosurgeon and to just hold on, until I could see the Neurosurgeon. Now, looking back, Dr. Mora’s gentle and kind suggestions for me, which he typed out for me to take home, are wonderful and really helping me in daily life while I wait on the medication that I hope will help me.

Julie
4mm herniation, ICH (pseudotumor) …haha I finally have letters to put after my name!

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#11

Hello,

I will be out of the office due to medicial reasons until approxamatley some time inFebruary. If you have any questions or need help please contact Terri Park @ 205-6685-6625 or Christine Savery @ 208-685-6619.

Thank you,
Courntey

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#12

Tracy,

Good to know you’re feeling better. I am actually working to get Dr.Di noticed by a magazine, would you be interested in helping?

Dr.Di saved our son’s life. I remember talking to you awhile ago and referring you to him. I have referred about 6 people who have seen him :slight_smile:

Please let me know if you would want to share your story about him.

Thanks!
Beth
(Tyler’s mom

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#13

I am in 100% agreement with Beth I am being treated by Dr. Xiao Di and he is amazing! He has given me some what of my life back! I am now in the rebuilding stages of my spine at the Clinic and would not go anywhere else!

I actually moved from Texas to Cleveland to be there full time and get the help that I need!

Best of luck and remember your not alone in this! There are alot of us out there! All you have to do is ask and tell us how your feeling, we can help! I have hit rock bottom and still now have days when I want it to end but all in due time.

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#14

Beth
I would love to help as much as possible! I am home recovering from my last
surgery 2 weeks ago. They placed the shunt back in but am still having
problems with infection… normal stuff!

Let me know what you want me to do! I was shooting higher! Oprah??? Get
the word out there. I did write a letter to the Head of the Dept regarding
Elena’s rudeness towards patients and the fact that Dr. Di needs help with
another PA and his own secretary, Eddie is shared by 3 neuros and
overloaded, kind of like jenny!.

Just let me know!

Best Regards,
Tracy

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