year after chiari

[shamonagan]

So I had decompression surgery last July. Prior to having the surgery I noticed my vision was acting funny, I began to see "stars" all the time....Anyway, after the surgery my headaches were much better, however, now I have had a ton of pressure in the back of my head, the vision problems are still here, I have stiffness/tingling in all four limbs...can anyone help me? I am desperate to find some relief...coud this be healing or is something else going wrong?

[selmaS]

  Hi Zak...here is a link to the Health Pages where we do have info on EDS...

http://www.medhelp.org/health_pages/Neurological-Disorders/-What-is-Ehlers-Danlos-Syndrome-EDS/show/730?cid=186

We also have a EDS group here on MedHelp with a few threads that have links to video info...http://www.medhelp.org/forums/show/417?camp=msc

Keep in mind, not all of us may be hypermobile or appear to be, but it is still possible to have EDS....as with Chiari we r all diff and may have a diff combo of symptoms,

[shamonagan]

thanks for your reply's, Its been quite the journey....anyway I dont have a syrnix, however my NS did mention there could be some "re-routing" of the nerves post op anyway and it could take a while. Maybe thats just whats going on. I have not been diagnosed with EDS, not sure what the symptoms are? Thanks again for the support, this forum is stellar.
-Zak

[shamonagan]

what are the symptoms of EDS?

[frankie_rush]

Hello and Welcome.

I had Surgery also in July of last year.  I also had the vision problems before but they have went away after surgery.  But the tingling I do have had had it since surgery.  I had a syrnix that was large from what they said C2-T1.  That is the reason for all the tingling is nerves basically re-routing themselves and healing.  Do you have a Syrnix ?  Selma also brought a good point did you let your doctor know, if not do cause the more they know the more they can help.  I had mine done in Indiana at IU Health. I hope it stops for you cause it can get aggravating.

.

[selmaS]

  Ok...the reason I ask is bcuz if u were to have Ehlers-Danlos  using a patch that is not of ur own tissue can cause issues.

So many do not know b4 and when they have set backs or an issue they then find out they do have EDS,....

So do look into the possibility as it can affect how u feel and heal.

[shamonagan]

it was a cadaver patch

[selmaS]

  Did u report to him the issues u r having? Dec. would have been 6 months post op, do u have a scheduled one yr visit with him as well?

Post op care is non existent...sad to day....once u heal from the surgery itself u need to locate a NL or a PCP that can offer help...but if u feel like this since u had surgery u need to report it to ur NS.

It is possible that u have underlying conditions or one developed post op, which can happen as well.

Do u know the type of patch used for ur dura patch?

[shamonagan]

Thanks Selma,

Yes it was a full decompression with duraplasty. I had a post op mri in December and everything was fine. I don't believe I was checked for related chiari conditions. I am in Columbus, Ohio. Dr. Prevedello did my surgery and was great. Just wondering if there is a better place for post surgery care?...
Thanks - Zak

[selmaS]

Hi and welcome ...I did reply to ur similar post in the other thread....u can read it and respond here to keep all ur info in one place.

If u have more questions just ask : )