Tomorrow I am leaving to Mexico to have a consultation at the Neurosurgery Center in the city of Mexico. I decided to have an extra opinion before having my surgery in Spain. I want to know if the surgical procedure in Spain (which is very different than the procedure here in US) is really going to help me. I know that in Mexico they give honest opinions and my best friend works there.
I wanted to let you all know because If anyone wants me to ask them anything about your personal condition or situation I can ask them, it will be just their opinion I know, but it can help, more information is never wasted, specially if the information comes from someone who is well informed and is just giving the information to help and not because they are their patients.
Please, let me know and have a great day everyone!
What are the differences in the Chiari treatment in Spain verses Mexico City? I am very interested. Then we could compare their treatment with what we have in the US? I am also very interested in pain management in Spain. I have been to Mexico many times and understand their pain management options. I also know Cuba has excellent Medical Care. Have you checked into Cuba at all? Thank you very much for any information you can give me. My daughter is studying in Barcelona or Madrid, for a Semester in the Spring. She is very excited. Victoria has actually been taking Proper Spanish or Castilian since she was 3 years old.
I don't know yet about the procedures in the Chiari treatment in Mexico, I will find out the next week on my consultation, I have the appointment on Sept. 3rd. As of the Chiari treatment in Spain I know about it; they told me I am eligible for the "section of the filum terminale" which means that the decompression will NOT be done on this procedure through my head, it will be done trough my back, they cut the filum terminale (only like 1 cm) and by this way they assure that the pressure on my head (because of the Chiari and my huge Arachnoid cyst) will be relieved. They also assure that the recovery time is a lot less than the regular decompression surgery. I will put a link with this information for you if you are interested in reading more. In Mexico I will ask them what do they think, what do they know about this procedure, etc etc (because in this Institut in Spain it's the only place in the world that is accredited on performing this kind of surgery)
I haven't checked into Cuba, but I'm open to EVERY possibility! my brother has contacts in Cuba, maybe I have an option there! thanks! It's very exciting for your daughter that she will be going to study for a semester in Spain! that's really nice! is she studying in the medical field?
I will leave tomorrow but I will be checking my email regularly for any questions you (or anyone) from this group may have.
TracyZ said:
Hi Lourdes,
What are the differences in the Chiari treatment in Spain verses Mexico City? I am very interested. Then we could compare their treatment with what we have in the US? I am also very interested in pain management in Spain. I have been to Mexico many times and understand their pain management options. I also know Cuba has excellent Medical Care. Have you checked into Cuba at all? Thank you very much for any information you can give me. My daughter is studying in Barcelona or Madrid, for a Semester in the Spring. She is very excited. Victoria has actually been taking Proper Spanish or Castilian since she was 3 years old.
What are the differences in the Chiari treatment in Spain verses Mexico City? I am very interested. Then we could compare their treatment with what we have in the US? I am also very interested in pain management in Spain. I have been to Mexico many times and understand their pain management options. I also know Cuba has excellent Medical Care. Have you checked into Cuba at all? Thank you very much for any information you can give me. My daughter is studying in Barcelona or Madrid, for a Semester in the Spring. She is very excited. Victoria has actually been taking Proper Spanish or Castilian since she was 3 years old.
My daughter is actually studying Anthropology, Archaeology & Business Administration. She was born loving all World Cultures. I am so glad we have met. I hope your trip to the City of Mexico will be both enjoyable & allows you to get some Chiari answers. I have read about the procedure through your back. If you have an option of not having neck pain, I would recommend that. Please have a Great trip and be sure and let me know what you learn.
Thank you & Godspeed,
Tracy Z.
Lourdes said:
Hi Tracy,
I don't know yet about the procedures in the Chiari treatment in Mexico, I will find out the next week on my consultation, I have the appointment on Sept. 3rd. As of the Chiari treatment in Spain I know about it; they told me I am eligible for the "section of the filum terminale" which means that the decompression will NOT be done on this procedure through my head, it will be done trough my back, they cut the filum terminale (only like 1 cm) and by this way they assure that the pressure on my head (because of the Chiari and my huge Arachnoid cyst) will be relieved. They also assure that the recovery time is a lot less than the regular decompression surgery. I will put a link with this information for you if you are interested in reading more. In Mexico I will ask them what do they think, what do they know about this procedure, etc etc (because in this Institut in Spain it's the only place in the world that is on performing this kind of surgery)
I haven't checked into Cuba, but I'm open to EVERY possibility! my brother has contacts in Cuba, maybe I have an option there! thanks! It's very exciting for your daughter that she will be going to study for a semester in Spain! that's really nice! is she studying in the medical field?
I will leave tomorrow but I will be checking my email regularly for any questions you (or anyone) from this group may have.
TracyZ said:
Hi Lourdes,
What are the differences in the Chiari treatment in Spain verses Mexico City? I am very interested. Then we could compare their treatment with what we have in the US? I am also very interested in pain management in Spain. I have been to Mexico many times and understand their pain management options. I also know Cuba has excellent Medical Care. Have you checked into Cuba at all? Thank you very much for any information you can give me. My daughter is studying in Barcelona or Madrid, for a Semester in the Spring. She is very excited. Victoria has actually been taking Proper Spanish or Castilian since she was 3 years old.
I hate to be a naysayer and, being a US MD, obviously I am biased. If you truly have a tethered cord, tethered cord release may help some patients with Chiaris. However, if you truly have a normal lumbar MRI with the conus medullaris at or above L1-2, a cord untethering is much less likely to help(in fact, that specific questionable indication for surgery and its frequent use was one of the reasons the Chiari Institute in NY was shut down, and brought Dr. Rekate in to resume). This is not complicated. If you have something pulling the brain down, e.g. a tethered cord, release of the tethered caord may relieve symptoms(but many patients have had symptoms for too long, the cerebellar tonsils are impacted and decompression is still necessary). HOWEVER, if you have an arachnoid cyst, the cyst is the cause of elevated intracranial pressure, pushing down the cerebellar tonsils and causing the Chiari(meaning the cyst needs to be treated first). Variants of these cysts(Dandy-Walker cysts are midline congenital spinal fluid collections) are a common cause of reversible Chiaris. If you have elevated intracranial pressure due to a cyst, a Chiari malformation, and then open up the lumbar dura(which has to be done for spinal cord untethering), what do the pressure changes do? Low lumbar pressure, high intracranial pressure? It makes the Chiari worse.
I'm not trying to dissuade you from having a tethered cord release, but make sure your neurosurgeons have done this operation many times and talk to patients who underwent the same surgery by the same MD about their improvement. Your story raises alarm bells for me(but I clearly don't have all the information). I practice in Orlando, which means we have many international visitors. I've seen enough similar complications.
I would agree that sectioning of the filum terminale is a much easier operation than a sub-occipital decompression, both for the patient and the surgeon.
Very Interesting. I am sure Lourdes will read your post. Thank you. I think she is getting different consultations at this stage. I am very interested to see Cuba's approach to Chiari Treatment. My personal interest is Foreign Pain Mgmt. Does anyone have better long term pain options?
Dr. Trumble said:
I hate to be a naysayer and, being a US MD, obviously I am biased. If you truly have a tethered cord, tethered cord release may help some patients with Chiaris. However, if you truly have a normal lumbar MRI with the conus medullaris at or above L1-2, a cord untethering is much less likely to help(in fact, that specific questionable indication for surgery and its frequent use was one of the reasons the Chiari Institute in NY was shut down, and brought Dr. Rekate in to resume). This is not complicated. If you have something pulling the brain down, e.g. a tethered cord, release of the tethered caord may relieve symptoms(but many patients have had symptoms for too long, the cerebellar tonsils are impacted and decompression is still necessary). HOWEVER, if you have an arachnoid cyst, the cyst is the cause of elevated intracranial pressure, pushing down the cerebellar tonsils and causing the Chiari(meaning the cyst needs to be treated first). Variants of these cysts(Dandy-Walker cysts are midline congenital spinal fluid collections) are a common cause of reversible Chiaris. If you have elevated intracranial pressure due to a cyst, a Chiari malformation, and then open up the lumbar dura(which has to be done for spinal cord untethering), what do the pressure changes do? Low lumbar pressure, high intracranial pressure? It makes the Chiari worse.
I'm not trying to dissuade you from having a tethered cord release, but make sure your neurosurgeons have done this operation many times and talk to patients who underwent the same surgery by the same MD about their improvement. Your story raises alarm bells for me(but I clearly don't have all the information). I practice in Orlando, which means we have many international visitors. I've seen enough similar complications.
I would agree that sectioning of the filum terminale is a much easier operation than a sub-occipital decompression, both for the patient and the surgeon.
Thank you very much for your information and your opinion! I have to say that in all the time since I was diagnosed I’ve found myself searching for information, trying to understand the medical terms by myself, trying to decide what’s best for my case, my first neurosurgeon didn’t help me at all, he just recommended me to go see a psychiatrist… and he laughed (yes, he did literally) when I asked him what was “reversal cervical lordosis” (which I have also) he said: “don’t worry!!” I told him that I just wanted to know and told him what I had read about it before the appointment and then he laughed. At this point, I don’t know if that is reversible, or that if the other “problems” found on my spine (level L1, L3, L4) are reversible or not. I really don’t know because I haven’t found a neurosurgeon who can see my case individually and answer my questions thoroughly… So, you are the first Dr. That I feel is answering more than the the doctors I have seen in person. The neurosurgeons I have seen in the ER just ask me why I haven’t had the surgery yet.
I’m very interested in your opinion about my case, I wish you could read all my reports and MRI’s, etc. if you are in Orlando I can go there if necessary.
I’m still in México, my appointment is on Monday sept. 3rd., I will ask them all my questions too. It makes sense what you told me about my cyst, and treating it first.
See how things go in Mexico. I rarely havepatients travel to me unless we are pretty sure surgery is the option but I do review MRIs. Feel free to google me(Dr. Eric Trumble). You can get my address, etc that way, if you want to send a CD-ROM. I'm not trying to give you a run around but don't want to turn this into an advertisement. Your case in aprticular just raised alarm bells for me(again, without all the information).
This is the first time I've read this thread and I just want to say thank you. Thank You for this very smart detailed answer and thank you for helping the members with your expertise and generosity of spirit. Also, so many of us have had very negative experiences with doctors and we all hope and believe that there are doctors like you out there. Thank you for showing us that some doctors are compassionate and do care. We are all very lucky and blessed to have you here.
Wendy
Dr. Trumble said:
I hate to be a naysayer and, being a US MD, obviously I am biased. If you truly have a tethered cord, tethered cord release may help some patients with Chiaris. However, if you truly have a normal lumbar MRI with the conus medullaris at or above L1-2, a cord untethering is much less likely to help(in fact, that specific questionable indication for surgery and its frequent use was one of the reasons the Chiari Institute in NY was shut down, and brought Dr. Rekate in to resume). This is not complicated. If you have something pulling the brain down, e.g. a tethered cord, release of the tethered caord may relieve symptoms(but many patients have had symptoms for too long, the cerebellar tonsils are impacted and decompression is still necessary). HOWEVER, if you have an arachnoid cyst, the cyst is the cause of elevated intracranial pressure, pushing down the cerebellar tonsils and causing the Chiari(meaning the cyst needs to be treated first). Variants of these cysts(Dandy-Walker cysts are midline congenital spinal fluid collections) are a common cause of reversible Chiaris. If you have elevated intracranial pressure due to a cyst, a Chiari malformation, and then open up the lumbar dura(which has to be done for spinal cord untethering), what do the pressure changes do? Low lumbar pressure, high intracranial pressure? It makes the Chiari worse.
I'm not trying to dissuade you from having a tethered cord release, but make sure your neurosurgeons have done this operation many times and talk to patients who underwent the same surgery by the same MD about their improvement. Your story raises alarm bells for me(but I clearly don't have all the information). I practice in Orlando, which means we have many international visitors. I've seen enough similar complications.
I would agree that sectioning of the filum terminale is a much easier operation than a sub-occipital decompression, both for the patient and the surgeon.
I already saw a neurosurgeon in Mexico, I didn't tell him the past opinions given to me before knowing his opinion and he gave me the same opinion as you. He said that if I don't have a tethered cord, he doesn't see the need to have the risks associated with the surgery of the section of the filum terminale, he told me that he would recommend the decompression surgery instead because my arachnoid cyst is the cause of the Chiari. He said that my cyst is really big and he wouldn't touch it in the surgery, he would not recommend a shunt because there is a risk of hemorrhage and a 80% chance of the fluids to fill up again, he would only monitor the cyst every year. What do you think about leaving the cyst intact?
I am interested of course in sending you my images, thank you very much!
Dr. Trumble said:
See how things go in Mexico. I rarely havepatients travel to me unless we are pretty sure surgery is the option but I do review MRIs. Feel free to google me(Dr. Eric Trumble). You can get my address, etc that way, if you want to send a CD-ROM. I'm not trying to give you a run around but don't want to turn this into an advertisement. Your case in aprticular just raised alarm bells for me(again, without all the information).
I'm back from Mexico, I saw Dr. Juan Barges Coll and he recommended the decompression surgery instead of the section of the filum terminale (Surgery recommended to me in Spain) he gave me the same opinion as Dr. Trumble gave me here on the Chiari support group, but he also told me he would not do a shunt on my cyst because he says there is a risk of hemorrhage and a 80% chance of the cyst to fill up with fluid again, he said he would only monitor the cyst yearly to see how it is (because it is really big). He also said he prefers to perform a decompression surgery than a section of the filum terminale surgery because the latest have more risks and because I don't need to take that risk since I don't have a tethered cord. He really took all the time to answer all my questions about all other problems I have on my spine (diffuse disc bulges, desiccations, protusions, bilateral facet degenerative changes, reversal cervical lordosis..) all these things I didn't understand before and unfortunately, the doctors I have seen before didn't explain me anything when I asked them what all these were. He even gave me the name of other neurosurgeon in Ohio, in case I didn't want to travel all the way to Mexico to have the surgery, the Dr. in Ohio is Daniel Prevedello. He said I would spend like 2 or 3 days in the hospital and two more weeks to be able to travel.
Also, he told me if I wanted to have the surgery in Spain, I should investigate more about other cases, successful stories of other patients who had the same as me, and make sure that the surgery helped them; he started reading the pages I have about that procedure and he found only 2 patients. He said he wanted to know more about it because it seemed that they are basing this procedure in an old concept (the relief of the tethered cord).
Everything you are saying seems reasonable. If you want, I'll be happy to review the images(just send the CD-ROM) to my office. All the contact information is at my web site www.neurosurgeons4kids.com
Thank you very much! I will send the images to you for review
Dr. Trumble said:
Everything you are saying seems reasonable. If you want, I'll be happy to review the images(just send the CD-ROM) to my office. All the contact information is at my web site www.neurosurgeons4kids.com
I sent you the CD-ROM last week, you should have received them on Saturday or Monday Sept 24th; I just realized that I forgot to include you my email address in the package in case you want to contact me by email.
Dr. Trumble said:
Everything you are saying seems reasonable. If you want, I'll be happy to review the images(just send the CD-ROM) to my office. All the contact information is at my web site www.neurosurgeons4kids.com