Hi all,
Has anyone had any experience with Dr. Diluna at Yale hospital in New Haven, Connecticut? I had a appointment with him last week and would love to see if others have any experience with him? Perhaps there is someone here who has had surgery done by him?
I am hopeful someone else knows about him
Please share your experiences/opinions if you have been to see him
Thank you so much!!!
Shane
How did your appointment go? What do you think? No personal experience with him, sorry. But interested how it went.
Jenn
I am desperately trying to find a Dr in CT to help me and I would love to hear your comments on your appointment. I live on the shoreline.
Hey Stacey,
I suffer from Chiari Malformation grade 1. Dr. Diluna told me that surgery is an option. He told me that after 2 weeks or so I should be up and living a "normal" life again. I have to be honest....I saw Dr. Bolognese from new York last year and he also recommended surgery, but his surgery was more invasive and would lead to 3 months recovery time.
So, with that said...having Dr. Diluna tell me I could be normal again was quite SHOCKING to say the least. From what I have read online and on this support group, it put me in mental state of thinking that I had very little hope with this condition. Dr. Diluna totally changed my perspective on things. (I must say this here.....because I know how powerful hope can be....I do not know your condition or if he will diagnose you the same way as me, but I hope my email helps you out some) He described the surgery, talked about symptoms I have been having, recovery time, etc.. and he told me that I am symptomatic of a chiari sufferer. I have a follow up on june 13 with him, and from there I plan on getting surgery done.
My recommendation is that you call ASAP (it took me 5 weeks to get an appointment with him) and schedule a visit with him. He is super nice and you can tell that he generally cares about his patients. He has also performed the operation on numerous other patients. And, the best part is that he UNDERSTANDS our condition and actually has answers to why we feel the way we do.
Again, he is at Yale, in New Haven, CT
I hope he can help you like he is helping me!!
Cant wait to hear how it goes for you
Shane
Stacey said:
I am desperately trying to find a Dr in CT to help me and I would love to hear your comments on your appointment. I live on the shoreline.
SSS, For me, there is a difference between the experience of 10-15 yearly or several weekly. Does this NS perform:
**a duraplasty -why or why not?
A laminectomy
A tonsillectomy -why or why not?
**Plate placement to back of skull- why or why not?
Cranial cervical fusion for CCI- have you been screened for hypermobility/EDS and subsequently screened for cranial cervical instability? Been screened for congenital CCI like basilar invagination?
These are all performed or not performed based on the PREFERENCE of each NS. For example, If an NS does not do the duraplasty because his patients have a high incidence of CSF leaks when he does....move on to to another NS.
I'm am sure there have been cases when a pt feels they become normal again after surgery, but I think a two week recovery period would be an exception to the normal recovery time. Most of us take many months, even years to shake the post op fatigue and pre-op symptoms. We also often experience post op "set backs" when old symptoms return an linger for a bit, then go away again.
Something we all have in common is wanting to get back to normal as fast as possible, so we have to be diligent in making sure we pick the best possible surgeon and try to avoid future surgery.
I wish both of you the best and want you to have the best possible outcomes.
Jenn
sssnov76 said:
Hey Stacey,
I suffer from Chiari Malformation grade 1. Dr. Diluna told me that surgery is an option. He told me that after 2 weeks or so I should be up and living a "normal" life again. I have to be honest....I saw Dr. Bolognese from new York last year and he also recommended surgery, but his surgery was more invasive and would lead to 3 months recovery time.
So, with that said...having Dr. Diluna tell me I could be normal again was quite SHOCKING to say the least. From what I have read online and on this support group, it put me in mental state of thinking that I had very little hope with this condition. Dr. Diluna totally changed my perspective on things. (I must say this here.....because I know how powerful hope can be....I do not know your condition or if he will diagnose you the same way as me, but I hope my email helps you out some) He described the surgery, talked about symptoms I have been having, recovery time, etc.. and he told me that I am symptomatic of a chiari sufferer. I have a follow up on june 13 with him, and from there I plan on getting surgery done.
My recommendation is that you call ASAP (it took me 5 weeks to get an appointment with him) and schedule a visit with him. He is super nice and you can tell that he generally cares about his patients. He has also performed the operation on numerous other patients. And, the best part is that he UNDERSTANDS our condition and actually has answers to why we feel the way we do.
Again, he is at Yale, in New Haven, CT
I hope he can help you like he is helping me!!
Cant wait to hear how it goes for you
Shane
Stacey said:I am desperately trying to find a Dr in CT to help me and I would love to hear your comments on your appointment. I live on the shoreline.
Hey all,
Jenn, thank you for your input. I am glad to hear another point of view. To be honest, when Dr. Diluna told me 2 weeks, I was shocked too!! I have a followup on june 13 with him and I will ask him about the different procedure/tests you mentioned.
He did tell me that the surgery that was done in the past is "overkill" for this condition. In other words, he says the surgery he does shaves the skull to create space and there is no need for patches, or things like that.
Can I ask this? When did you have your surgery? Perhaps newer techniques have been developed? (I have to cling to something here.....as I am very distraught with this darn condition and am hoping that I can be "normal" with no side effects)
Thank you for your time :)
Shane
Shane, I had decompression 15 months ago with duraplasty, c-1 laminectomy, and a plate placed at back of skull. I think my decompression was done just fine, but I also have Ehlers Danlos Syndrome with associated cranio cervical instability that requires another surgery. I’m having a cranio cervical fusion done in the next few months. I am wondering if this surgeon is proposing to do a bony (skull) decompression only, without patching the dura (which allows for more space to house your brain). Some surgeons only do the bony decompression, but some of their patients don’t get relief from their symptoms because they required more room for their brains. Another reason for opening the dura is that some if have adhesions and arachnoid adhesions that bind the tissues at the area if the foramen magnum together. I had adhesions that bound my arteries, nerves, and cord together. They were cut away to free the tissue and unblock CSF. With opening of the dura comes extra risk, though. Possible risks are infection including a-septic meningitis and CSF leaks.
Another thing to consider that is highly important is Ehlers Danlos syndrome. Many people with Chiari have EDS and must be screened for associated cranio cervical instability. If a person has CCI and it is not surgically addressed at the time of decompression, symptoms will persist and worsen over time. The symptoms if CCI and Chiari are the same. It is important to find the surgeon who is highly skilled with the complexity of Chiari and the syndromes that commonly come with it. Unless your case is in emergency status you can take the time needed to find the right one.
jenn