Basilar invagination anyone????

Question

Hi everyone, I had my Chiari and fusion (occipital to c2) surgery done 3 years ago because I was told that I have Chiari malformation as well as basilar invagination and that I had no choice about the fusion and I had to get it done. Now, 3 years after surgery my headaches are still gone but I am having extreme stiffness in my neck and severe insomnia. I was wondering if any of you have Chiari with basilar invagination and if do have these two conditions, have you had the fusion done? I would like to get the hardware removed if possible but I don't know if that's possible at the moment because my NS told me that it HAD to be done. Anyway, any response is appreciated especially from anybody who has Chiari and basilar invagination.

Kstavrid · Answer

Yeah but to be honest I'd rather be dead than live with a fused neck, I'm only 18 and can't imagine living like this for the rest of my life. I haven't been checked for eds but I'm sure I don't have it because I don't experience pain at all and I'm not hyper mobile.

selmaS · Answer

Dealing with the symptoms of BI may seem better then your fusion but the reason a fusion is done is to prevent the bone  from compressing the brain stem.....it is far worse to leave it alone then to deal with it......

 CCI is more a reason for bobble head....were you checked for EDS?

Kstavrid · Answer

Did dr jallo only do a decompression or did he do an odontoid reduction as well? I was only 15 when I had the surgery and I would much rather deal with the symptoms of basilar invagination rather than keep the fusion in there. Was your head wobbly before surgery as well or just after?

thrice3 · Answer

I also have a basilar invagination. I got three opinions on surgery. The second opinion was from a surgeon at the Chiari Institute and he insisted I get the fusion. That idea scared me and I did not want to lose range of motion, so I went to a third surgeon at Johns Hopkins. Dr. Jallo did a minimally invasive surgery on me, and I am doing very well. It has been four years and I am still much better than I was doing before, although I am still constantly having to lean my head in my hands or on my shoulder because of our weak and wobbly heads.

kwalker0004 · Answer

Some things I have found to help out on the nights I cant go to sleep are:

1. Begin to eat dinner at an earlier time
2. if you have kids begin there night rituals after dinner then put them to bed
3. You yourself start doing your night time rituals.
4. Take several deep breaths: Breath in for 5 seconds hold for 10 and let go for 15 seconds. This helps allow your body to relax and to get ready for bed
5. Be in bed by 9 pm 0r 10 pm. Having no tv in room helps.
6. Don't have your cellphone by the bed. We are so tempted to check the phone all the time that it distracts us and prevents us from going to bed. 

Begin doing this every night. This will help reprogram your internal clock. With these few things I have found it to really help. I usually eat at 6, be prepared for bed by 8. and lay down by 9.

Kstavrid · Answer

Yes, that's the same way I feel.

selmaS · Answer

Hi,,,yes insomnia is an issue I know we all have sometimes it happens in spurts....the other issue is non refreshed sleep....seems no matter how much we do sleep when we sleep we do not feel the benefits.

 I know just how you feel....b4 surgery nothing helped me....post op, I now take an antihistamine ( I have reflux and PND) and this not only helps with those but does help me sleep better then I ever did b4....but I do have an occasional night of insomnia.

Kstavrid · Answer

Thanks for your reply, do you experience insomnia? Because I have had insomnia for 1 year now, I had my surgery 3 years ago and the melatonin I am taking is no longer working. Is there anything I can do about this or anything that has helped for you because I can't function very well with 2 hours of sleep per night.

selmaS · Answer

Hi and welcome to the Chiari forum.

 Basilar invagination is when the top portion of the spinal column  migrates up into the skull where the brain and brain stem are....compression of the brain stem is what they try to avoid when they suggest surgery for bot BI and CM...and you had both....so I do understand why you had surgery....I do not know however how far your spinal column migarated upward...and what issues it was causing....the hardware is to help prevent the spinal cord from migrating again up into your brain or brain stem....I do not think it is safe or wise to have it removed.

 The stiffness you may be able to work on with PT but your ROM will be limited due to the fusion..

 We have had many members that have had both of these conditions....I am not sure if we have one that is currently active on the boards.