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Chiari Malformation Community
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5792451 tn?1390938290

Specialist dismissed hyper mobility concerns?

I recently asked my specialist if my hyper mobile joints would make the decompression surgery more difficult and he said no. He said that the two have nothing to do with each other. I know that he's the doctor but what he said completely contradicts everything that I've read on this forum. I'm already full of anxiety about the surgery and I just don't want someone cutting into my brain unless I feel confident that all my concerns are at ease :-/
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620923 tn?1452919248
COMMUNITY LEADER

  I know what u mean....it was my NS that told me about the relation btwn Chiari and EDS....and those that have EDS can have issues as our skin tends to be more fragile, scars more easily and tend to be slower to heal.

I knew I was slower to heal long b4 I was ever DX'd with EDS I had no idea y I was that way, just always was ...and I always bruise very easily too.

But I had no idea my joints were as hyper mobile as they are, and the older I get the more my joints sublex.

There are many Drs out there that do not see or understand the relation btwn Chiari and EDS and how the surgery can affect us...just dealing with the dura patch can be a huge issue...then staples or stitches....

Wound healing can take forever if the wrong items are used....

Even doing all the right things healing can be very slow.

So it is not the joints that is the problem, but along with the hypermobile joints many have the fragile skin and  other issues with the skin....plus we r more likely to  reject foreign matter, so a dura patch made of nething but our own skin ...that does not mean we may not have an issue...but we will have less of a chance of developing one.
Avatar universal
I think I can understand why he said that:  you asked about the surgery, not your recovery.  But yes, he doesn't understand the connection yet.  

I only recently was told (by the PT) that I am hyper mobile, but I heal fine.  I'm supposed to be doing exercises to strengthen my core; the PT said I'm a bobble head, and I'm using the wrong muscles, so I'm frequently injuring myself.

Trust that you will heal well (eat natural food & take vitamins), and long term consider PT; the new doctoral level physical therapists are quite knowledgable & holistic.
1667208 tn?1333111449
In my opinion the Dr. has no clue!  There are so many out there that have this simple cookie cutter opinion and there are so many new studies that add lots of information!  Don't just dismiss it, I did and spent the next three years having lots of problems and surgeries!  I did not fight to get my own tissue and my synthetic patch was a total nightmare, nightmare does not even begin how bad things got.  I went by ambulance for emergency brain surgery with so many things going wrong because spinal fluid was drilling holes in my cerebellum because the patch had stuck to my brain!  I do NOT have huge healing issues, I don't have tissue that tears out with things like stitches, but I had huge issues with tissues inside of me behaving the way that they should!  Learn all you can and keep your views known to your Dr.  Fight for what you know!  EDS III which is dismissed by many was extremely important to my situation and I found out a bit too late!  Good luck with things!  -Zygy
5792451 tn?1390938290
Eeek! That sounds awful!!!! I haven't been diagnosed with EDS (yet), but my joints are so lax that my doctor said "honestly, I've never witnessed anything like this before" which wasn't very comforting lol. I have looked up the symtoms of EDS and I have all of them, but no one in my family has it, so I don't know if it's worth investigating.
1667208 tn?1333111449
I had not been diagnosed either!  I dismissed it myself for a while because now that I am in my 40's I don't move the way I used to!  I do know that when Dr's move me though they would always comment on how "loose" my joints were. I also know as a kid I was very bendy and did strange things with my fingers.  My daughter is the same way and I just figured this is how we are and did not think about it much.  Even reading on this site it took me a while to give it a second thought!  I had a bunch of strange things.  I had a shunt put in and then removed and when they took it out, my side would not close up and spinal fluid kept flowing out of me.  I had to have another surgery to close it and my NS said that what he saw looked like he had pulled the tube ten minutes ago when in actuality it was pulled 7-10 days earlier!  Strange things happened to me and I can only assume it is the EDS.  I took my daughter to get a diagnosis and from there they gave me one too, and that was all after my surgeries.  Just a little bit late :) LOL  If you do think you have it than just try to educate the Dr.  and if I were you I would really make sure that my dura patch was going to be my own harvested tissue!!!  Good luck with things!  -zygy
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