We are from Canada and my son (27 years old) has gone through 4 years of the Chiari "run around". Even though he could never afford surgery in the states, we decided the best thing would be for him to go to TCI to get some definitive answers from someone expert in the field. He saw Dr Bolognese and based on my son's particular anatomy, he felt that removal of the tonsils was the best option for him.
I know there is a lot of controversy about the best surgical options and that the movement seems to be towards bony decompression but here are my questions:
1. For those of you who had tonsillar removal, what was your experience like as far as recovery & reversal of symptoms?
2. For those of you who have gone to TCI for surgery, is this the only surgery type that Dr Bolognese likes to do or does he sometimes recommend bony decompression.
3. Is there more likelihood of needing a second surgery if you have bony decompression only?
Our next stage is getting into to a neurosurgeon here in Canada which will take many months with the possibility that a) they don't agree with Dr B's findings b) they are not very experienced c) they only will consider bony decompression d) even if they agree that he is a surgical candidate, between the time of waiting to see the neurosurgeon & getting an operating date, it might be another 18 months..
So, one of the options we are considering is travelling to somewhere that we can afford the surgery. My daughter is in an area of research that deals with medical tourism - travelling outside your own country for medical treatment. She knows of several highly accredited hospitals in countries like Thailand and India. He could probably have surgery in Thailand for $8,000 and it could be done relatively soon (we will be sending his mri for them to assess). This particular hospital in Thailand has 25 neurosurgeons on staff so I'm pretty confident they would have someone with expertise in this area.
Have any of you had surgery outside of the states?
When a Chiari I malformation is severely symptomatic, causes neurological deficits, or is associated with syrinx formation, the treatment is surgical. All options for surgery have a common goal of expanding the posterior fossa allowing normalization of CSF through the 4th ventricle and foramen magnum. This goal can be accomplished in many ways, from simple bone removal, to duraplasty and tonsillar resection. So far, no one method has shown superiority over the others.
I went to TCI for my surgery and I do not know what u r asking?What type of surgery do u think they do at TCI?...Mine was a bony decompression with dura plasty and shrinkage of the tonsils....
Each patient is reviewed and offered a treatment course they feel is best for them....so what someone else had done at TCI may be totally diff then what I had....but it is what they feel we needed.
May I ask what area of Canada you are in? I live in BC and had my surgery done by a NS in Victoria. Even though you are correct and there is not a lot knowledge here in Canada, I was lucky to find one who knew something about it and was willing to help me (in fact he DX'd me too). I can say nothing but good things about his compassion and his skill, he did a decompression with a dural opening/patch and aC1 laminectomy. I have no idea whether he would agree with your son's previous assessment but he is the most open minded surgeon that I have come across. My personal belief is that surgeons should do all 3 to make sure that there isn't a chance of having to have another surgery.
What you may find disappointing though in Canada is the lack of follow up care. I figured with having brain surgery that I would have continuous care and that was not really the case. My NS was very good at seeing me back whenever there was an issue but when there was nothing different on my MRI there was really nothing more he could do. Unfortunately, to get rehabilitated I had to find the right path on my own.
Keep in mind too, even with all the right surgical avenues taken, it can take a very long time to feel like it has improved his life...at the beginning I actually felt worse (though walked better). Now at 2 years post-op, I am not the person I was but I am happy with how far along I have come and my quality of life has gone up immensely.
I would be happy to share any of the info I have gathered if it would make your life easier! Feel free to PM me if you would like to ask me anything.
Thanks for your comments Selma. My son has no neuro deficits or syrinx, Dr B's recommendation for surgery is based on quality of life. We're not sure what that will mean in Canada as far as considering him a candidate for surgery. My question about the types of surgery at TCI was answered by what you wrote, that it is specific to the individual. Thanks again.
We're in Ottawa. His family doc is referring him to a NS but no one seems to know which one is knowledgeable and experienced with Chiari.Because he has no syrinx or neuro deficits - we're not sure if 'quality of life' will be reason enough for surgery in Canada.
I live in Montreal and am scheduled for a decompression, laminectomy and duraplasty in December. I have a NS at the Montreal Neurological Institute who is wonderful. But am afraid of going ahead with surgery. I have constant but tolerable headaches, tingling in arms and legs, blurred vision, tinnitus, nausea and dizziness and joint pain.I don't mind living with these. It's the constant fatigue that is the most debilitating for me. I cannot be physically active and have a hard time participating in my family life (I have a 5 and a 7year-old). I am afraid that the surgery will not treat the fatigue and that I will have complications or worse symptoms after than before surgery. My herniation is 12mm. Anybody deals with more fatigue than pain?
Fatigue is part of my daily life- I am not sure if it is because I have 4 kids on the go constantly or health. I have been known to take a nap at my son's soccer game because I am so tired. sunglasses and a circle chair that I can lean back in...
First of all... Selma- "what kind of surgery do you think they do at TCI?" really? I know you are the all knowing Chiari expert but no one needs the condescending tone. Secondly we were just at TCI and the removal of the tonsils is what Dr. B said he recommends now. Not the procedure that you had. I thought that was very interesting as the standard was what you had. So be careful about the way you come across, and Dr. B has changed his technique it appears. You might want to email him about it do you can continue to be the all knowing one. I for one would like to know if there others that have actually had this procedure on this forum.
I do not profess to be all knowing, I only try to share what I know.....I was informed that tonsil removal is no longer a typical procedure for Chiari, it is done however for certain cases where the tonsils may be wrapped around other strictures and it is warranted,...but is not done automatically if u have decompression.
There have been several members that had their tonsils cut or removed for the reasons I mentioned above.
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