Possible Complications?

[Marybuzz27]

Hello everyone. I am about 10 days post op and have been home since Wednesday. Wednesday night I did ok and part of the day Thursday. But since Thursday afternoon I have hade an extremely bad pressure headache and have been throwing up every time I try to eat or drink. My mom said my incision looks good and there is no bulging. Any ideas what it could be besides from the fact I'm probably dehydrated?  

[selmaS]

  Seems like I would be getting some $$ had I bet....

I pray this change of patch if needed helps u move forward with ur recovery, do keep us posted if u go back into surgery and I will post another prayer thread for u <3

[Marybuzz27]

They treated for meningitis but the doc doesn't think that's the issue candy more because I've been on steroids since I've been here. He said I might have a tiny cf leak that is not picking up on scans. But he said that even though it might be no bother to most people he believes I have some sort of tissue disorder so it could be a big deal to me. Now my head has been worse the last two days he said it might be my patch. So he wants to wait till Tuesday to see if I turn a corner if not we might have to discuss another surgery to look for a leak and harvest my own tissue for my patch

[selmaS]

  I would put money on it being EDS.....as it is closely related to Chiari.....and if that is the case it may be u have a CSF leak or are rejecting the dura patch if u got one.....

Chemical meningitis is another possibility.....

Do u feel worse when upright?

  

[Marybuzz27]

Well here is an update. I've been in the hospital with post op complications for ten days now. They still can't figure out whats wrong. I'm constantly throwing up liquids and food for three weeks now. They put in a picc line today and giving me iv nutrients. They think it's just a residual side affect from the surgery that I'm going to have to ride out.  But I'm not so sure that's what it is. I have a terrible pressure headache and horrible nauseous and when I walk I go black and almost pass out. Also the geneticist came in and said I definitely have some sort of connective tissue disorder they just need to diagnose which one. It's so frustrating cause all the drs I have seen here don't seem to be communicating with one another and each doing their own thing !!!

[selmaS]

  Yes, having an EDS specialist is as important as a Chiari one....

It all depends on what type of EDS u have, it can play a huge role in ur everyday life as it too can cause HA's,. all over joint pains, ......many are similar to Chiari symptoms so it is difficult to know which symptoms are from which condition.

  My Chiari specialist did my testing to DX me.....they use what is called a Beighton Score....it is posted in the EDS group here on MedHelp....then there are some visual things like to check if u have blue scalara....they look at ur skin....and ask questions about if u r easy to bruise, slow to heal...etc...

Some days I need pain meds bcuz of how my joints sublux.....I even went to the ER with pain as my muscles went into spasms....

Everyone is different, so how it affects me may not be the way it affects u.

[Marybuzz27]

Thank you! I got it. I'll have to look into it. How does eds affect your life if you don't mind me asking. Also what kind of testing is involved in getting a diagnosis. University of florida is where most of those specialists are. It's about a 4 hour drive which I don't mind making. Is getting an eds specialist really important like it is getting a chiari specialist?

[selmaS]

  I do have a list, many are Chiari Drs....I will PM it  to u as some of  the info may get ***d out by the MODS.....

  Phone #'s etc are not allowed on the public forum.

Look in ur in box

[Marybuzz27]

Thanks so much for your help Selma! Do you happen to have a list of eds specialists? My ns is very good and I trust his judgement. But he is also very busy so I don't see him everyday in the hospital to see if he has a recommendation of a dr.

[selmaS]

  Once u have a DX of EDS, the rheumatoid Dr will decide if u need to see a geneticist.....and if it is not EDS, I am sure they will be to let u know if it is Marfans....

A CSF leak can also cause the swelling....but  I am sure the Dr would be able to tell from the MRI.....

[Marybuzz27]

And no he doesn't think I have a csf leak. He says that being two weeks post op it's unlikely. Plus they did an MRI when I was in the er Saturday and it only showed some swelling so he is leaning toward chemical meningitis. That's why they have me on iv steroids. I need to ask him about patch rejection tomorrow because I know he used a synthetic patch

[Marybuzz27]

I live in west palm beach florida but have been going to university of Miami where my ns is. When they were prepping me before my chiari surgery they were trying to get an arterial line and when I woke up I had about 20 pokes all over my body and they were unable to pass the line through the artery. The anesthesiologist said my arteries were to small. I also have hyper Mobil joints and you can see my veins through my skin. I am also very tall 6'1 and have super long arms and legs. My brother is built the same way and he has had numerous spontaneous lung collapses. So he told me to check for a disorder. Do these things normally run in families? So see a rheumatologist? I wasn't sure to see one of them or a geneticist    

[selmaS]

  Hi.,....EDS is Ehlers-danlos and so many of us with Chiari do have this....and it can cause u to reject a patch when having a dura plasty if u have EDS.....

A Chiari NS normally can/will DX u and refer u to a rheumatoid Dr that specializes in EDS.....

Not knowing where u r....I can not offer names.....

Did ur Dr say if u have a CSF leak?....what does he think is going on that he feels u have a connective tissue disorder?

[Marybuzz27]

Well I was doing okay once discharged from the er Saturday. Until Monday I was unable to eat or drink without throwing up. So I found myself back in the hospital Wednesday and am still there. They have me on a high dose of steroids but I still can't keep anything down. Anyways my ns told me that once I get discharged he wants me to get checked for a connective tissue disease such a eds or marfans. I was wondering if anyone had any type of input as to what these syndromes are and which type of dr should I see for it? Thank you!

[selmaS]

With the flu bug going around I think u made a great choice to stay home...just keep visitors to a minimal as well to keep that risk away.

Keep us posted on how u r doing.

[Marybuzz27]

I got home early this morning. I was really dehydrated and they think I have a touch of chemical meningitis. They told me they would be fine with me going home or they would be happy to admit me if I felt like I wanted to stay. I decided to go home. Why would anybody want to stay in the hospital if they don't have to? Plus I still have my staples in and am paranoid about picking up infections in the hospital. Thanks for the help ladies

[selmaS]

  Hi....I hope u took Lisa's advice and called ur Dr...if u r dehydrated that is not good so call asap.

May I ask what u have been doing since u r home?....

Have u tried to sleep in an inclined bed or recliner? That may help with this pressure u r feeling.

Suck on ice chips so u r not getting too much water all at once but so u get some hydration......

Keep us posted.

[desertstorm2009]

Mary...
So sorry to hear about your pressure headache. While I know this can happen in the healing process, I agree with you dehydration is always a concern. However, when it comes to anything neuro, it's best to be on the safe side and call the Dr. He may want to evaluate you which wouldn't be a bad idea. Or he may order something. Also, if you have a b/p machine or know someone who does, check it on both sides, and document the results along with your heart rate (most machines show this as well), before calling the Dr as this can also help determine possible dehydration. (Low bp, elevated heart rate) Good luck, hope you feel better soon :-) Lisa