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Institut Chiari de Barcelona/surgery with them
Have anyone been seen at Institut Chiari de Barcelona or have been in contact with Dr. Royo?
I contacted them b/c I needed a third opinion as I am still fighting my Dr´s here as they do not think I have Chiari even after reading the report from the Chiari Institute in NY and they go by the old definition of Chiari Malformation ( that with 5mm herniation or more.. mine is 3,5mm ) The only thing they agree on is my syrinx :/
I sent them my scans and they said that I do have Chiari Malformation and that I am a candidate to undergo Filum Terminale Seccion surgery that is minimum and takes only 40 min and you are home the same day.
Has anyone had this type of surgery with them?
I am slowly getting worse and I hate the fact that the Dr. here are not even considering that there might be other ways to diagnose Chiari, they wont even let me try Diamox but with the third opinion I hope they will wake up and listen...
hdav
I contacted them b/c I needed a third opinion as I am still fighting my Dr´s here as they do not think I have Chiari even after reading the report from the Chiari Institute in NY and they go by the old definition of Chiari Malformation ( that with 5mm herniation or more.. mine is 3,5mm ) The only thing they agree on is my syrinx :/
I sent them my scans and they said that I do have Chiari Malformation and that I am a candidate to undergo Filum Terminale Seccion surgery that is minimum and takes only 40 min and you are home the same day.
Has anyone had this type of surgery with them?
I am slowly getting worse and I hate the fact that the Dr. here are not even considering that there might be other ways to diagnose Chiari, they wont even let me try Diamox but with the third opinion I hope they will wake up and listen...
hdav
hello im writing from Turkey my mum has this ilness pls help us can sent u her cd had operation but still suffering pl get back to me my mail adreess ***@****
COMMUNITY LEADER
Always happy to invite someone new, but also sorry u had to seek us out....if u need ne help in navigating the forum, please let me know.
Hi and thank you for the welcome
I have sent her a copy of my post via email as you suggested. Thank you
I think I have chiari too but just dont know what to do or where to go to be honest. Im so tired of b eing sick, I have been so sick for so long now.
Im not sure I even have the energy for all this and to top things off in the last coule of days Ive ended up using my wheelchair more because the pain in my back and legs is just horrific.so I guess Ill just have to play the wait and see game I suppose.
Im pleased to be here and thank you so much for the quick response.
Nice to meet you
Sarah
I have sent her a copy of my post via email as you suggested. Thank you
I think I have chiari too but just dont know what to do or where to go to be honest. Im so tired of b eing sick, I have been so sick for so long now.
Im not sure I even have the energy for all this and to top things off in the last coule of days Ive ended up using my wheelchair more because the pain in my back and legs is just horrific.so I guess Ill just have to play the wait and see game I suppose.
Im pleased to be here and thank you so much for the quick response.
Nice to meet you
Sarah
COMMUNITY LEADER
Hi and welcome to the Chiari forum.
Lisa has not posted since April, but she may still visit the site from time to time, so I would suggest u send her a PM which will generate a email so she will know someone is trying to make contact.....
It is very possible that u too have herniated cerebral tonsils...and it could be from the CSF leaks u have had....
I feel it is important to get a few specialists opinions and go with the one u feel most comfortable.....
DO send Lisa a PM (private message ) I am sure she will reply.
Hi, I am British but have lived in Spain on and off for 12 years.
My son has been diagnosed in Valls with Chiari and has seen Dr Obarrio Lopez in Bellvitge and is now waiting for the surgery.
I too am nervous about this because he is a man of few words, very poor bedside manner and only operates 1.5 days a week.
I also have a son in the UK who has been diagnosed with Chiari and sent away. He has been told he wont see even a neurologist let alone a neurosurgeon until next year and is under Southampton hospital.
I myself have been suffering CSF leaks for 6 years following surgery in Tarragona for a slipped disc. I have been under 11 specialists in the UK, none of which believed or could find any leaks and 3 in Spain, one of which was the same Obario Lopez who agreed I was leaking could see leaks on a cisternogram but couldnt managed to do a simple blood patch. I finally went to the USA and saw a CSF leak specialist in NC Duke medical centre. She found 6 leaks. she fixed me but unfortunately I now am leaking again. On top of that I too have very many symptons of Chiari and am waiting for appointment for neurologist in Tortosa.
This is complicated I know but I wanted to be involved in this thread as I thought it very important. We have been in touch with the Chiari Centre of Barcelona who reviewed my sons scans and agreed he has chiari but need more testing as they say his scans dont even show if he needs disc reduction and syrinx. I dont know much about their proceedure but they have been going 20 odd years and seem to have very many success stories. It costs nothing to send images to them for reviewing.
Anyway I too would love to be in touch with more people from Spain and the UK regarding Chiari and specialists (or not) they have seen.
Thanks so much
Sarah
My son has been diagnosed in Valls with Chiari and has seen Dr Obarrio Lopez in Bellvitge and is now waiting for the surgery.
I too am nervous about this because he is a man of few words, very poor bedside manner and only operates 1.5 days a week.
I also have a son in the UK who has been diagnosed with Chiari and sent away. He has been told he wont see even a neurologist let alone a neurosurgeon until next year and is under Southampton hospital.
I myself have been suffering CSF leaks for 6 years following surgery in Tarragona for a slipped disc. I have been under 11 specialists in the UK, none of which believed or could find any leaks and 3 in Spain, one of which was the same Obario Lopez who agreed I was leaking could see leaks on a cisternogram but couldnt managed to do a simple blood patch. I finally went to the USA and saw a CSF leak specialist in NC Duke medical centre. She found 6 leaks. she fixed me but unfortunately I now am leaking again. On top of that I too have very many symptons of Chiari and am waiting for appointment for neurologist in Tortosa.
This is complicated I know but I wanted to be involved in this thread as I thought it very important. We have been in touch with the Chiari Centre of Barcelona who reviewed my sons scans and agreed he has chiari but need more testing as they say his scans dont even show if he needs disc reduction and syrinx. I dont know much about their proceedure but they have been going 20 odd years and seem to have very many success stories. It costs nothing to send images to them for reviewing.
Anyway I too would love to be in touch with more people from Spain and the UK regarding Chiari and specialists (or not) they have seen.
Thanks so much
Sarah
Hi.
I have lived here in Spain for 3 years now. I got my diagnosis just before i left UK. I was very interested in the chiari centre in Barcelona, but was put off by their seemingly 'easy' surgery to resolve the cm problems. I am still on the chiari runaround and hoping to find a chiari specialist somewhere near who will listen to me. I saw a NS at a hospital in Barcelona, but he wasn't a chiari specialist and i was disappointed by his lack of knowledge on the subject. I know Irislita has found a good NS and the info is posted on the forum. Good luck.
Lisa
I have lived here in Spain for 3 years now. I got my diagnosis just before i left UK. I was very interested in the chiari centre in Barcelona, but was put off by their seemingly 'easy' surgery to resolve the cm problems. I am still on the chiari runaround and hoping to find a chiari specialist somewhere near who will listen to me. I saw a NS at a hospital in Barcelona, but he wasn't a chiari specialist and i was disappointed by his lack of knowledge on the subject. I know Irislita has found a good NS and the info is posted on the forum. Good luck.
Lisa
COMMUNITY LEADER
B4 u consider traveling that far for a surgery that is controversial....talk to others that have research Drs over there.... we are all different and many get relief from their symptoms with the typical decompression done here in the states....
Talk to Iris and Lisa.....
and know all ur dx's b4 u consider surgery....JMHO
I have not had this surgery but have spoken to someone who has.
My impression is that it is a laparoscopic surgery that clips the filum at a lower place than the surgery that is done in the US. RThere is no laminectomy, and no brain surgery. It affects Chiari by releasing tension from the base of the spine. The woman I talked to said it completely resolved her neurological and GI symptoms. She was out of the hospital but was required to spend 10 days in Span post surgery.
I am quilt interested in this given the option available here, and having had the diagnosis of Chiari and possibly tethered cord. I have also been told by a neurosurgeon that all these are very controversial within the neurosurgical community.
My impression is that it is a laparoscopic surgery that clips the filum at a lower place than the surgery that is done in the US. RThere is no laminectomy, and no brain surgery. It affects Chiari by releasing tension from the base of the spine. The woman I talked to said it completely resolved her neurological and GI symptoms. She was out of the hospital but was required to spend 10 days in Span post surgery.
I am quilt interested in this given the option available here, and having had the diagnosis of Chiari and possibly tethered cord. I have also been told by a neurosurgeon that all these are very controversial within the neurosurgical community.
COMMUNITY LEADER
Start a new thread asking just that...and u will get answers...I know we have 2 over there that had surgery, I do not know where they went, but I know it was not the Barcelona Chiari center.
Thank you Selma for your information, I dont have this condition but I am trying to find as much information as I can for my friend who suffers from Chiari I.You mentioned: ''We do have other members in Spain, that can let u know where they went'',do you know any?how can I contact them.
Any info much appreciated.
Any info much appreciated.
COMMUNITY LEADER
Hi and welcome to the Chiari forum.
We do have other members in Spain, that can let u know where they went, the member u posted to has not posted to this forum since Nov '11 , so u may want to try to private message them so they get an e-mail informing them someone is trying to make contact.
I hope u find info and support here, sorry u had to seek us out.
Hi hdavids,
Did you went for the procedure?? Anyone else tried the Institute Chiari de Barcelona?
Did you went for the procedure?? Anyone else tried the Institute Chiari de Barcelona?
COMMUNITY LEADER
I know a few that had the TC release and none lasted 40 mins...nor went home the following day....
It all depends on how tight the cord is how well the release helps the CM and syrinx....sometimes both the release and PFD r needed.
Since ur herniation is not a big obstruction the release may be beneficial to start with....but, again, I do not think 40 mins will get it done or done correctly.
JMHO
"selma"
I did fell there was something not right about the time of the surgery itself and recovery afterward.. the person who I am in contact with told me this and this surgery is done to stop the progress of CM and SM.
Am I right abut that this is the Tether cord surgery?
linnielou232: I have a mild CM 1, (3,5mm), syrinx and occult tcs.
Thanks guys for the feedback :), I will deff look carefully into it but I feel my trust for TCI is much more.
I am not aware of your condition, but if it has any thing to do with your Chairi I know you are dealing with your brain. I agree with Selma I would question this before you have it done. I don't think any procedure can be done in 40 min then go home right away. Please look into to futher before going through with it.
COMMUNITY LEADER
Hi...hold on...who said that to un- tether ur cord would be a 40 min surgery with going home the next day?
That to me does not sound right at all.....I am putting off that surgery as it is more involved than that.
We did have someone sometime back that contacted the institute in Barcelona, but I am not sure what the members thoughts were....
"selma"
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