Aneesha and Basilar Invagination

Hello All,
My daughter Aneesha has B.I and she has to undergo surgery for scoliosis…Her spine surgeon does not want to do the correction as she Has BI and he is afraid that this will be dangerously fatal.I would really appreciate if anyone here can share their experiences in BI…if anyone here has BI? How to deal with it in your daily life and any personal experiences about living with it…please , do help me…
Regards,
Ambareen
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Hi Innie - It's been since 2010 when I had my surgery for chiari and basilar invagination. My problem wasn't so much the chiari as the BI. When I looked up BI it was a very scary thing to me. I one a doctor tell me at the first place I went that I was a very risky case and he wouldn't do the surgery. I was fortunate to find Dr. Henderson who did the surgery for me. It was my understanding from him that it was dangerous not to do the surgery because of the danger of paralysis. So, I can't of felt damned if I did and damned if I didn't. The surgery didn't sound appealing to me when he explained that he would basically rebuild the bones and skull using harvested rib bones. After mulling over it for quite some time and doing a lot of talking to God and going back and forth in the middle of the night, I decided that if I did nothing that would not be good and, if I had the surgery no matter how it turned out, I would have at least taken some action to make my life better. For me, it turned out to be a good decision. Dr. Henderson did a really good job and most of the fuzziness and fogginess I felt in my head is gone. When it's your child, it has to be a very agonizing decision based. I would make sure the doctor explains the degree of the basilar invagination, risks of doing the surgery and the risk of not doing the surgery. if it's very bad, the risks of not doing the surgery may outweigh the risks of having it. My decision was made after talking at great length to my neurosurgeon and what he recommended. He told me that there might be a point at which he couldn't help me. Is the surgery to just correct the scoliosis or would correction of the BI be part of the surgery. I would think that would make a difference. I never know at any time whether symptoms I may be having are as a result of the BI or chiari - I think they are interconnected with each other. If you want to talk feel free to send me a message. I'm so sorry you are having to make this difficult decision. Basilar Invagination is a very serious scary thing. We don't have much choice other than to trust the advice our doctors give us. When it comes to our children we want to make the right decision......that's hard. As a mother I know that when our kids hurt we do too. If I can help in any way, feel free to contact me.

Hi,

I had BI, Chiari and scoliosis. I had surgery for my BI In October 2014 by Jean Paul Wolinsky at Hopkins. He is very good and specialist with BI and Chiari. It was a major surgery but my back, neck and nerve pain have gone away. I would recommend you make a consultation with Johns Hopkins Spine Center. Feel free to message me about this. I would go to the best and that is Hopkins.

Thank you for offering your support, members. Just a quick note that Aneesha is outside of the U.S and travel may not necessarily be in their plans.

Hi Ambardeen, are you guys with the original surgeon who did her decompression? I seem to remember she has osteogenesis imperfecta?? Was/ is this why he doesn’t want to fuse? I had a BI until about a year ago, and the only thing that helped relieve my symptoms was a rigid cervical collar. Have you asked her surgeon about a cervical collar? How is she doing? How is the apnea?

Jenn

Mine was called Invagination of the Foreman dens, Chairi. I was advised the same information as Shirley C. My surgery was done at the Cleveland Clinic in Ohio. My only caution is: Go to a surgeon who does the surgery frequently. My Doc was Dr. Krishnaney, wonderful man, treated my family and I very respectfully and incredibly warm. Later learned he has researched this horrific problem for quite sometime. I live in Michigan, so hassle of going to Cleveland was stressful and an expense. It was well worth the hassle. My symptoms were, falling, unable to turn my neck, serious occipital pain and seizures. I described it as: Clammy and faint. Cleveland advised that kind of pain is going in and out of shock. Glad they gave me the words. I had to have 2 surgeries, trans-oral decompression thru my mouth, then rebuilding my spine thru the back of skull, they said it was rare to need both, I was placed in a medically induced coma. The bone graft was taken from my hip. ...Take care, and Keep the Faith. It is a difficult ordeal.....

Sophie

Dear Jenn,
So grateful for your guidance.Aneesha underwent a duro Plasty last year and her syrinx is dissolving now…to a nearly 40%…This was the requirement of her spine surgeon.But when he took her to the theatre his neuro surgeon pointed it out to him that it was dangerous to operate on her spine because of her BI…now he says he will not do it until the BI is addressed…though her original neuro surgeon says that it’s ok to go ahead with the surgery even with the BI…but now even he isn’t sure…this is so unnerving…Though Aneesha really doesn’t have the BI symptoms that I read hear…except for the sleep apnea and Hydrocephallus which developed after the duro Plasty…and walking issues because of the scoliosis and lumber lardosis…
Have you had surgery for BI and what are your symptoms? Do you wear this collar all the time?Is it possible for you to post an X-Ray of your cervical spine so that I can maybe see your extent of BI and compare it with Aneeshas and show it to her surgeon?
Regards,
ambareen


jcdemar said:

Hi Ambardeen, are you guys with the original surgeon who did her decompression? I seem to remember she has osteogenesis imperfecta?? Was/ is this why he doesn’t want to fuse? I had a BI until about a year ago, and the only thing that helped relieve my symptoms was a rigid cervical collar. Have you asked her surgeon about a cervical collar? How is she doing? How is the apnea?


Jenn

Thanks Shirly,
Am so glad all turned out great for you…I would like to know if occipital fusion was done to stabilise your BI? How restricted are your neck movements after this surgery and how many of your vertebrates are fused?Also if you could share your pre op X-Ray so that I may show it to my doctor here…if it is not inconvenient that is…my daughters C1 and C2 have been shaved by the neuro in order to remove the syrinx during her first decompression surgery that’s why I am not sure if he can fuse them now…that’s why I wanted to know the details of your fusion…Am so grateful for you time and support…I hope you don’t mind if I keep bothering you with more questions…Hoping to hear from you,
hugggssss,
ambareen



Shirley C. said:

Hi Innie - It’s been since 2010 when I had my surgery for chiari and basilar invagination. My problem wasn’t so much the chiari as the BI. When I looked up BI it was a very scary thing to me. I one a doctor tell me at the first place I went that I was a very risky case and he wouldn’t do the surgery. I was fortunate to find Dr. Henderson who did the surgery for me. It was my understanding from him that it was dangerous not to do the surgery because of the danger of paralysis. So, I can’t of felt damned if I did and damned if I didn’t. The surgery didn’t sound appealing to me when he explained that he would basically rebuild the bones and skull using harvested rib bones. After mulling over it for quite some time and doing a lot of talking to God and going back and forth in the middle of the night, I decided that if I did nothing that would not be good and, if I had the surgery no matter how it turned out, I would have at least taken some action to make my life better. For me, it turned out to be a good decision. Dr. Henderson did a really good job and most of the fuzziness and fogginess I felt in my head is gone. When it’s your child, it has to be a very agonizing decision based. I would make sure the doctor explains the degree of the basilar invagination, risks of doing the surgery and the risk of not doing the surgery. if it’s very bad, the risks of not doing the surgery may outweigh the risks of having it. My decision was made after talking at great length to my neurosurgeon and what he recommended. He told me that there might be a point at which he couldn’t help me. Is the surgery to just correct the scoliosis or would correction of the BI be part of the surgery. I would think that would make a difference. I never know at any time whether symptoms I may be having are as a result of the BI or chiari - I think they are interconnected with each other. If you want to talk feel free to send me a message. I’m so sorry you are having to make this difficult decision. Basilar Invagination is a very serious scary thing. We don’t have much choice other than to trust the advice our doctors give us. When it comes to our children we want to make the right decision…that’s hard. As a mother I know that when our kids hurt we do too. If I can help in any way, feel free to contact me.

Dear Missy,
Did they fuse your vertebrates and also do your scoliosis surgery later? Are your head movements restricted and how long was the BI surgery?Has it effected your voice or eating ? Please do update me on this…I live in Pakistan so going to the US seems impossible to me…I wish I could…I feel so helpless…Thanks for your reply and sharing your experience with me…hope to hear from you again,
Regards,
Ambareen



Missy10 said:

Hi,

I had BI, Chiari and scoliosis. I had surgery for my BI In October 2014 by Jean Paul Wolinsky at Hopkins. He is very good and specialist with BI and Chiari. It was a major surgery but my back, neck and nerve pain have gone away. I would recommend you make a consultation with Johns Hopkins Spine Center. Feel free to message me about this. I would go to the best and that is Hopkins.

Dear Sophie,
I can imagine ow horrific it must have been for you to undergo so much.You were lucky you had such an experienced surgeon .How are you doing now and how has this surgery helped you?You are a brave lady…I am so confused as to how to go about all this…but I hope there’s a way…it’s encouraging to read your experiences and know that there is still hope…Thanks for sharing your experience …
blessings,
Ambareen


Sophie said:

Mine was called Invagination of the Foreman dens, Chairi. I was advised the same information as Shirley C. My surgery was done at the Cleveland Clinic in Ohio. My only caution is: Go to a surgeon who does the surgery frequently. My Doc was Dr. Krishnaney, wonderful man, treated my family and I very respectfully and incredibly warm. Later learned he has researched this horrific problem for quite sometime. I live in Michigan, so hassle of going to Cleveland was stressful and an expense. It was well worth the hassle. My symptoms were, falling, unable to turn my neck, serious occipital pain and seizures. I described it as: Clammy and faint. Cleveland advised that kind of pain is going in and out of shock. Glad they gave me the words. I had to have 2 surgeries, trans-oral decompression thru my mouth, then rebuilding my spine thru the back of skull, they said it was rare to need both, I was placed in a medically induced coma. The bone graft was taken from my hip. …Take care, and Keep the Faith. It is a difficult ordeal…

Sophie

Innie/ Ambareen,

Sorry I'm new to this, trying to reply to the right person. The surgery stopped the occipital pain, seizures, and falling. However, lost some range of motion in my neck, but PT worked with me on my range of motion. I'm able to drive a car. However, my falls were so unexpected and fell so hard I injured my should; just had a rotator cuff repair, bicep and torn tendons, my PT starts today at the facility. Personally, ..... I wouldn't hesitate having surgery, it saved me from becoming immobile. Doc explained without surgery my falling would become more frequent and one of these times I wouldn't be able to get up and end up immobile. He gave me 8 to 12 months before that occurred, I was too far into Chiari. It started May of 2012, was manifested by me falling asleep on a "noodle" (the type people use for swimming) surgery was Dec 10 and 12 of 2013. You have a difficult decision I was at the place where it was no longer a choice......it was incredibly scary (as you know). So sorry you are going through this, living in Pakistan is a journey from U.S. I'm wondering if you could contact "Doctors without Borders" to some how help you find someone in your area. I do know Cleveland Clinic is building a new medical facility in Dubai, don't know when it will be completed. Not sure the proximity from where you are to that destination. Apparently the plan is to fly surgeons in as needed. I'll see what more information I can find out for you. Please keep the Faith and Enjoy the Beauty of every waking Moment...

Sophie

Innie said:

Dear Sophie,
I can imagine ow horrific it must have been for you to undergo so much.You were lucky you had such an experienced surgeon .How are you doing now and how has this surgery helped you?You are a brave lady.....I am so confused as to how to go about all this.....but I hope there's a way....it's encouraging to read your experiences and know that there is still hope....Thanks for sharing your experience .....
blessings,
Ambareen

Sophie said:

Mine was called Invagination of the Foreman dens, Chairi. I was advised the same information as Shirley C. My surgery was done at the Cleveland Clinic in Ohio. My only caution is: Go to a surgeon who does the surgery frequently. My Doc was Dr. Krishnaney, wonderful man, treated my family and I very respectfully and incredibly warm. Later learned he has researched this horrific problem for quite sometime. I live in Michigan, so hassle of going to Cleveland was stressful and an expense. It was well worth the hassle. My symptoms were, falling, unable to turn my neck, serious occipital pain and seizures. I described it as: Clammy and faint. Cleveland advised that kind of pain is going in and out of shock. Glad they gave me the words. I had to have 2 surgeries, trans-oral decompression thru my mouth, then rebuilding my spine thru the back of skull, they said it was rare to need both, I was placed in a medically induced coma. The bone graft was taken from my hip. ...Take care, and Keep the Faith. It is a difficult ordeal.....

Sophie