Am happy to be part of this group where there seems to be alot of empathy & great support! I feel lucky to have stumbled by you guys:)
I just joined yesterday, so am still trying to find my way around the site.
Actually, I’m not the one with CM. It is my best friend. He is 31 yrs old and was just diagnosed with Chiari a couple of days ago:( He has been lately experiencing symptoms of severe dizziness (it occurred 2-3 times in the last couple of weeks where he feels strongly pulled down beneath - once it happened while he was driving!!), back-head headache, heart palpitations and thirst.
The problem with my friend is he already has another congenital heart malformation that resulted in him having a metallic heart valve implant back in 2005. He is on an ongoing Warfarin medication ‘blood anti-coagulant’ and therefore he could not even have an MRI (you see you can’t have an MRI if you have any metal implants in your body).
So all he had was a CT where his CM was identified. I haven’t looked at it myself and I don’t know till now its measurements. According to a neurologist he saw yesterday, he should live with the symptoms as long as they’re bearable and not consider a decompression surgery. The Dr told him he’s much better off without one.
It was only 2 days ago that I knew there was ever something such as Chiari malformation that existed, and have been googling/ reading about it alot since then - this is even how I came through this support group.
Though relieved with the fact my friend doesn’t need surgery (which he is still planning to get a second opinion for) the problem now is I don’t know if his condition is not treated, is it likely that it worsens in the future? I read that the tonsils continue to further descend over time:( Is there anything he can do to inhibit the development of his condition. Because aside from the classic risks and possible complications of a CM decompression surgery, with his anticoagulant medication, he is likely to lose alot of blood if he ever undergoes that surgery.
I am still very overwhelmed by this whole matter, and I wish I can find a way to help him.
I’m really happy you found this group also! Chiarians, and those who love and support those with chiari, always feel like they might as well be on the moon. Because it can feel Ike you are quite alone, but you are not. I recently joined this group also. Untill found this group I had never even known or talked to anyone who knew what it was let alone knew exactly what I’m going through.
I have known that I’ve had cm since 1984, but didn’t have a lot of symptoms till after 2001 when I was attacked. I lived in a very rural state with no experts on chiari. I was mis diagnosed for years. Finally in Nov. 2006 I had decompression surgery. I literally rolled into the hospital in a wheelchair and after I healed I no longer needed the wheelchair! The surgery was a successful for me. After I moved to WI I was injured and have some returning symptoms, but am trying to get into see a specialist that deals with a lot of chiari. I have learned a lot through the years of dealing with this and I think that if your freeing opts for surgery he should find a specialist. My neurosurgeon that did my surgery said that I was “cured” and would never need follow up again. Since then I’ve learned differently. There is no cure, just dealing with it as best you can, and see a specialist so you can get the best information for you! Get second opinions if you have to.
You seem like a very good friend, he is sure to need that during his journey.
Stay strong and my prayers are with your friend as he starts his journey.
Has your friend seen a nuerosurgeon yet? My experience with neurologists have not been good..they are not well versed in Chiari, I found.
Also there is a test that is very important for Chiari patients...it is called a CINE MRI...pronounced....Cinny, like Minny!
The test is a flow study to see if the patients Cerebral Spinal Fluid is flowing correctly....so when you see "CSF" we are talking about Cerebral spinal fluid.
You got great input , I see , from Barb and Emmaline....this gang here is great....glad you found us....and I so agree with my friends above....you are a true, wonderful friend. God Bless you!
Thank you so much for taking the time to reply back to me. I find it very kind and benevolent from someone like you to go out of their own self and own suffering to reach out and provide support to someone else- I believe this is the lovely spirit of this group and what it's all about.
My friend (Ali) is yet to see another neurologist by end of the week and we'll see what he has to say. For the time being, all I could do is research a little on the moves/ activities he needs to avoid with chiari as well as a list of anti-inflammatory foods that could help retard the chiari development (if there's such a thing) and another of pro-inflammatory foods that he needs to avoid.
Any other suggestions? tips?
Thank you again so much and I hope that every passing day brings you better health and comfort <3
God Bless!
Mai
BarbSalisbury said:
Hi Mai I'm really happy you found this group also! Chiarians, and those who love and support those with chiari, always feel like they might as well be on the moon. Because it can feel Ike you are quite alone, but you are not. I recently joined this group also. Untill found this group I had never even known or talked to anyone who knew what it was let alone knew exactly what I'm going through. I have known that I've had cm since 1984, but didn't have a lot of symptoms till after 2001 when I was attacked. I lived in a very rural state with no experts on chiari. I was mis diagnosed for years. Finally in Nov. 2006 I had decompression surgery. I literally rolled into the hospital in a wheelchair and after I healed I no longer needed the wheelchair! The surgery was a successful for me. After I moved to WI I was injured and have some returning symptoms, but am trying to get into see a specialist that deals with a lot of chiari. I have learned a lot through the years of dealing with this and I think that if your freeing opts for surgery he should find a specialist. My neurosurgeon that did my surgery said that I was "cured" and would never need follow up again. Since then I've learned differently. There is no cure, just dealing with it as best you can, and see a specialist so you can get the best information for you! Get second opinions if you have to. You seem like a very good friend, he is sure to need that during his journey. Stay strong and my prayers are with your friend as he starts his journey. Barb
Thank you so much for your reply. You must've been a great friend yourself to deserve a loving friend who looked after you!
My friend is getting a second opinion end of the week. Please pray for him. As I mentioned above, he already has very complex health issues and I am hoping he will not need the surgery now or ever.
I surely will stick around.
Take care & stay well.
Best,
Mai
Emmaline said:
Hi Mai, and welcome!
What a good friend you are! My friend did the same thing for me and it helped immensely. We need the support of our family and friends.
Symptoms come and go for us, and each person knows when it's time for surgery. A second opinion would be warranted for him, and it does depend on his symptoms. They can worsen, and they can get better. The longer the herniation the odds go up where more damage may occur.
The longer you hang around here the more you'll learn. So stick around!
It is a great gang alright! You guys are truly amazing. It is just overwhelming to see such compassion and support from people you just got to know - I am so very touched!
I have read alot about chiari those past 2 days and I know further tests should be conducted. But, my friend cannot have an MRI as he already has a metallic heart implant:( are there any other non-MRI tests that he can have?
I agree that a neurosurgeon would be definitely better than a neorologist. I believe he should be seeing one end of this week.
Please pray for him.
Many thanks & all the well wishes in the world!
Mai
lori said:
Hi...
Has your friend seen a nuerosurgeon yet? My experience with neurologists have not been good..they are not well versed in Chiari, I found.
Also there is a test that is very important for Chiari patients...it is called a CINE MRI...pronounced....Cinny, like Minny!
The test is a flow study to see if the patients Cerebral Spinal Fluid is flowing correctly....so when you see "CSF" we are talking about Cerebral spinal fluid.
You got great input , I see , from Barb and Emmaline....this gang here is great....glad you found us....and I so agree with my friends above....you are a true, wonderful friend. God Bless you!
THe doctor may do a lumbar puncture (which is highly recommended for Chiari patients as it can make the herniation larger) However, many docs do do it..I had it done ..with this test they can see the 'opening pressure' of CSF...if it is high , from what I understand, that would be an indicator that something is causing the high pressure...In your friends case, it SHOULD be clear to the dr. that the Chiari is doing it..since he has already be diagnosed with the condition.
Please be sure to have him find a NS soon...if possible, maybe you can go with him...another set of ears is always good.
What is your friends 1st name....for prayer reasons I would like to know if that is ok???
Thanks alot Beeba. You were certainly right about moving the post from the blog post to the discussions:) If it weren't for your advice, I wouldn't have started getting this very supportive feedback.
You have all right to be proud of this wonderful group of people.
Thanks again & God bless!
Mai
Beeba said:
Glad you moved this. Great responses. My group makes me so proud to call you all friends of mine.
Thanks again Lori for the info. I will keep you posted.
My friend's name is Ali (pronounced like Sally). It is so kind of you to pray for him.
May you always be well.
Best,
Mai
lori said:
Hi...
THe doctor may do a lumbar puncture (which is highly recommended for Chiari patients as it can make the herniation larger) However, many docs do do it..I had it done ..with this test they can see the 'opening pressure' of CSF...if it is high , from what I understand, that would be an indicator that something is causing the high pressure...In your friends case, it SHOULD be clear to the dr. that the Chiari is doing it..since he has already be diagnosed with the condition.
Please be sure to have him find a NS soon...if possible, maybe you can go with him...another set of ears is always good.
What is your friends 1st name....for prayer reasons I would like to know if that is ok???