Chiari Surgery Experience

[AlishaNiven]

I've been advised by my NS that i need to have decompression surgery. I feel fairly comfortable with him as my surgeon because he performed the same op in his anesthetist who had a full recovery.

My question to you all though is how much relief did you get from symptoms for those who opted for the surgery?

My main concerns are; pressure head aches, neck pain & ringing in the ears.

I've also got degeneration of discs in my neck and lower back causing further discomfort. The NS has also said I have a very small syrinx causing suspended sensory - he's told me I have time to decided when to do the surgery but the sooner the better because it has already started affecting my hands (weakness, tingling and numbness).

Would love to hear more about personal experience and opinion on success rates?

[selmaS]

  Once u rule out ALL related conditions, u will want to ask what all they plan to do during surgery....

As I said, the dura patch if placed can be an issue for some, so knowing all they plan to do can be helpful....

And knowing what they feel ur benefits will be....this is not a cure, just a means to slow progression.

Recovery can take up to 2 yrs for the nerves to heal...just bcuz the incision is healed does not mean u r done healing...so it is best to listen to ur body and take it easy....do not rush to get back to "normal" life no matter how much better u feel, as it can cause set backs....so prepare for resting and then some more resting post op.

[AlishaNiven]

Thanks for the reply Selma, I'll be sure to chat to him when I see him again for follow up on my stomach.

A bit of a scary time, I've been advised to have the surgery within this year - so I just have to pluck up the courage to make the decision and set the date. At least if I try for August I may able to have a small holiday to celebrate in December!

Are there any other specific questions you feel important to ask based on your experience?

[selmaS]

  Yes, EDS can have an effect how how u heal post op...so I feel it is extremely important to rule out.

With EDS u can have HA's as a symptom, all over joint pain....blue scalara...very soft skin, stretchy skin, easily to bruise, slow to heal....

malabsorption issues...GI issues, hiatal hernia, umbilical cord hernia......joints sublex or pop put of joint, hypermobile.

There is clinical observations as well as the Beighton Score...as a means for DXing this condition....

Many with EDS tend to have issues with meds and anesthesia....and since the skin is fragile staples may rip out and we may also reject foreign materials like staples or a dura patch, so knowing b4 the NS can take precautions to avoid post op set backs .

If u do schedule surgery please post in the surgery date thread so we can post a prayer thread for u,

[AlishaNiven]

I am thinking of scheduling the surgery for August so together me and the NS can eliminate any other conditions - he's prescribed me a 10 day course of stuff for my stomach - we reconvene after that and I may land up having a scope done to be double sure.

Should I be concerned about EDS? I see it is quite common for Chiari patients to have. What are the common symptoms or signs?

[AlishaNiven]

Hi Selma,

Thanks for the response! I did post a few months back as I was searching for a second opinion and couldn't find anyone in South Africa.

I have a host of symptoms not limited to the above but the NS believes some of them are due to disc dehydration/degeneration - by his instruction I need to start physio for that. Secondly, due to nausea from constant pain and difficulty chewing and swallowing I am extremely underweight and have some malnutrition due to this. I think at this point it is clear what I can fix and what surgery can fix.

I have not had a CINE MRI but brain, neck and spine as well as EEG and other neurological tests. The NS did confirm overcrowding and the development of a syrinx - would this not be an indication of restricted CSF flow?

I may have mis used my words here - exertion headaches with pressure in neck & shoulders would be the best way to describe

[selmaS]

  Hi many of us that have had surgery do have our experience posted in a journal on our profile page so u can readily find it.....

Mine is only available to friends, so if u can not see it  let me know.

Did u have a CINE MRI?....

Some pressure HA's can be relieved from surgery but not all...so it is important to know ALL related conditions b4 surgery as they can affect how u feel and how u recover....

Do u have other symptoms u r not sure are related?