Yea I do have some of those symptoms. I had my surgery in June and currently am dealing with a CSF leak. Maybe you should see your doctor to make sure everything is okay.
Hi and welcome to the Chiari forum.
I have to ask, did you have testing to rule out ALL related conditions? From what I have learned from my Drs and observations of this forum, most times there is a leak the patient has an unDX'd condition Ehlers-Danlos, it is related to Chiari and as a result we reject the dura patch if it is not made of our own tissue....this is one reason for a failed patch and leak, and a leak can cause a lot of very painful headaches and other symptoms.
Ask if a dura patch was placed and what type, and ask if you were evaluated for EDS...and other related conditions....
What is an unDX'd condition Ehlers-Danlos ?
How it is related to chiari?
hi welcome here sorry that you are here..
You have asked if this malformation is curable? unfortunately it is treatable but not curable ..I hope you would know the difference between the two.
If could share it Please do write as to what symptoms made you have it tested and later the surgery so that a knowledgable one wishing to reply could n assess if the symptoms which you have asked as to *when they would improve are new after surgery*or you had it before surgery already.
EDS is a connective tissue disorder which some people who have chiari seem to have it..and based on the feedbacks it seems to have a say on the surgical outcome.. For further details in full (reg EDS)you may try googling it if you wish to.
...there are certain other conditions like POTS, DDD,,Intracranial hypertension,sleep apnea etc., which are found along with chiari in some patients. ,apart from conditions like hydrocephalus syringomyelia etc
In case you have not been tested for some of these conditions but still had surgery please dont get anxious ..
I have wrritten it just for your information..please dont get scared
Hang in there till you get more replies from experiences and knowledgable persons like selmaS..
Good luck ..
Hi as wonderchiari has said Ehlers-Danlos is a connective tissue disorder and those with Chiari are prone to them as well as auto immune conditions....Un diagnosed conditions and issues can affect us if we move forward with surgery...and is very important to know about as many can have similar symptoms...EDS can cause HA's, and all over pains..plus we also tend to have issues with meds, and drugs used during surgery and we develop odd allergies to meds as well...even ones we took with no prior issues...so with Chiari decompression surgery we have the dura opened and a patch placed, if you have EDS you may reject the patch causing it to fail and leak...which will cause many post op set backs including possible infection.....if known of b4 precautions can be taken to help avoid....or cut back on the chances of these issues happening....
How it is related is still being studied....many now think Chiari develops due to having EDS....
So until they can tell us for sure, all we know is it is a related condition we need to know about just like Syringomyelia, tethered cord, sleep apnea, POTS, ICP, CCI....
A true Chiari specialist will know about these conditions and rule them out for you,
Hi all thanks for the informations.
could you please tell me what is sleep apnea? I also have problem with dry eyes is that also related to chiari?
When i was admitted in hospital due to leakage , i was given antibiotics through IVs for nearly a month
at that time my veins got collapsed and BCOZ of this they had to try more than 7 IVs. It became hard to
get my veins for even blood test and they started using baby needels and also for the last course of antibiotics
they had to put a bigger one for which they took me to radiology dept. I dont remember the name for that IV
(it was from my left hand to my right chest like a long tube). Even now my veins are not visible it is flat.
Is this because of the strong antibiotics or sym for EDS?
Hi In short sleep apnea is a condition where there is a disruption of brain signal to the lungs/breathing muscles thus causing breathlessness shortness of breath etc while sleeping..People tend to wake up all of a sudden grasping for breath .It can be obstructive(obstruction on the path way thus interruption) or central sleep apnea(brain itself has defective signal passage.
I might not have accurately described it but some what..
Dry eyes might also be related to your profession (i read in your description that you are an IT professional.Not sure of that..
Not getting Veins again I am not sure it is a sign of EDS or not because I have seen people especially women encountering it ..Not getting veins is seen in some cases...during IV registration or drawing blood..
Are you you on the thin side/
i dont get you as to what you mean by saying your veins are flat ..Anyways hang in
sorry I left the lastline abrupt I meant to say hang in patiently till you get cleared of your doubts .
Hi Wonderchiari iam slightly skinny so sometimes in my hand my veins used to bulge up like normally but now it stopped and have not incresed any weight .when i go for my blood test they find it difficult to get my veins and they used to tell my veins have collapsed.but before this antibiotics i didnt had such problems
Hi Wonderchairi did a god job explaining sleep apnea, there are 2 types, Central and Obstructive.....
Obstructive is when something is in the way and is not allowing air into the lungs, and Central is brain related.....
The vein issues you had with them collapsing could be Ehlers-Danlos...I have heard of others having this issue as well......and the dry eyes could be another condition like sjogrens or meds you have been on for your symptoms and it could also be Ehlers-Danlos....
The issue may not be the antibiotics but how long and how much IV use they used on you....
Hi selmas is this Ehlers-Danlos curable or same as chiari malformation?
EDS is not curable but is treatable....it is a connective tissue disorder that many Drs are looking into with research if most with Chiari have Chiari bcuz they also have EDS....weird, but interesting concept.
There are several types of EDS and I suggest you find a Dr that is well informed and experienced with it to help you....as with Chiari it is not that easy to locate a Dr for these conditions......
My appointment with surgeon is on coming tuesday to review my first MRI after my surgery. Will update you after that.
Sounds good....Good Luck <3
Hi and welcome to ou safe and supportive place. My dear mother always had vein issues when they could not be found for IVs or blood tests. She was rather thin also. I hope when you see your surgeon next week, you can get some definitive answers as well as some pain relief.
Hi I will let u know after the appointment.
Yesterday was my appoinment with the surgeon to review my MRI (taken after the surgery ).
My MRI was looking fine and there was no more blockages. He told tha everything was absolutely
fine and there is nothing to worry about. Reagarding my veins he told that it is because of the strong
antibiotics which was given for the infection.He said it will take 6 months or more to get back to
normal.But I still have sever upper back pain and neck stiffness for this am going for acupuncture(this was ok for him)
He also mentioned that he didn't use any sort of patches but used some sort of spunj which dissolves to our body
in order to avoid bleeding.Hope everything goes well.
Never heard of the use of a spunj in place of a dura patch,.....
And this is the first for the veins and antibiotics issue....will have to keep us posted on your recovery......thanks for sharing.