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

[selmaS]

  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"

[linnielou232]

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.

[hdavids]

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.

[selmaS]

  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"

[michelleapo15]

Hi hdavids,

Did you went for the procedure?? Anyone else tried the Institute Chiari de Barcelona?

[selmaS]

  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.

[michelleapo15]

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.

[selmaS]

  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.

[gardengirl55]

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.

[selmaS]

  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

[LisaRiu]

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