Syringohydromyelia, is it getting worse?

[Terrie0406]

I had full blown cauda equina syndrome which led to emergency surgery. in 2004 with laminectomy/discectomy at L5-S1.  In 2009 that disc had to be completely fused and I am now nearly 100% out of pain and doing very well.  The problem is that in 2004 it was incidently found that I had a syringohydromyelia  in my spinal cord.   It has been followed up on with 2 additional MRIs the lastest being in 2009.  It showed it getting larger but the neurosurgeon seems to think it is not a surgical issue at this point.  However, I am having some strange symtoms that my orthopaedic surgeon on a followup visit to him yesterday  thinks there may be a change in the syringohydromyelia. .  

My symptoms are as follows:

Leg tenderness and severe bottom of my feet pain and swelling  that started off intermittently but is now constant.  I have had a few bad falls over the last 2 months (one landed me on crutches with a torn muscle)  with lots of near falls.  I just seem to be off balance a lot lately.  I get a really stiff neck at times and  intermittent numbness in my feet and tips of fingers.  Holding the phone up for just 5 minutes can cause hand numbness and my feet can go numb with sitting or standing.  I cant stand still I constantly have to shift my weight.  My feet have broken blood vessels all around the ankles and look purple all the time with some permanent darker purple splotches and at times lots of purple dots all over the top of feet. I cannot even wear sandals or flip-flops  anymore because it freaks people out.  Another thing that has been happening is an inability to concentrate when working or doing most anything including constantly forgetting where I am in a conversation.  I was beginning to think I had adult onset ADD.   I have never had migraines before and have had 3 now in the last 4-5 months and other headaches as well.  I am 49 years old and more and more my outgoing fun personality is being replaced with isolation and fear of yet another embarrassing fall. I love hiking and that season is about to be here and there is no way I can do it currently..  I actially stumbled in my Ortho's office yesterday and he was pretty upset by it and is sending me to a different neurologist. I have attributed most of these symptoms to other things but I have a nagging feeling that its all about the syringohydromyelia.  Do my symptoms sound familiar to anyone who has a syringohydromyelia?  Does  this sound like symptoms that could be related to this syringohydromyelia?  

[selmaS]

Hi Terrie...I had ur drs name added to the list.

Please keep us posted on the neurostimulator and how it helps ur pain.

"selma"

[Terrie0406]

Hey Selma,  Just to update what happened after my appointment with the new neurosurgeon.  First of all he was great. Spent over an hour with me and really really listened.  He would be an excellent doctor to add to your doctor list.  After looking over all my MRI and asking me many questions he does not believe the syrnix to be the issue.  He believes when all the nerves were crushed over to one side when the disc blew back in 2004 cause damage that has worsened over the years and is effecting more and more areas.  He thinks the answer for me is to install a neurostimilator device and believes I am an excellent candidate for a great outcome.  I will be going through a trial first with a temporary one being put in tomorrow morning with the battery pack and such taped to the outside of my back.  I am nervious about it as this is done in an office with no anesthesia.  This will give us an idea if this will relieve me of the symptoms such as horrible nerve pain I have.  I will wear it for a few days.  If the trial is successful then I will have the permanent one installed in a hospital with anesthesia a week later.  Again, I was very comfortable and happy with Dr Chitole.  Though a little nervous I am more excited just to think we may have an answer.  Will let you know how it goes :)

[Terrie0406]

Dr.  Vidyadhar Chitale in Marietta, Georgia.  I am not sure if I found your most current list but the one I did find doing a search had no Georgia doctors listed.   I am both excited and scared about my appointment tomorrow. Weird huh. lol.  I just hope not to be dismissed again or looked at like there is nothing wrong like all these werid things happening to me are somehow normal.  

[selmaS]

Hi Terri,

Arnold Chiari is an older term, but it  is the same thing.....so, since he has it listed this is good, now once u meet him u will be able to tell if he is the right dr for u : )

May I ask who u r going to see?...is he listed on our dr list?

"selma"

[Terrie0406]

I just checked out what I could about my doctor I will be seeing and it does say he has interest in Arnold-Chiari malformation.  I am not sure what the difference is in Arnold-Chiari and other Chiari malformations.   Hopefully, this is good :)

[selmaS]

Some drs will use that term to describe chiari...the tonsils desending or herniated is chiari regardless of how large a herniation it is...especially if it is causing a CSF blockage.

When u get to this new dr, ask questions about chiari and see what they say...do not get disappointed if they brush u off, most that r not chiari specialists may do that...just move on to one that is.....

Many of us have gone thru that too...u go and get the royal run around u get frustrated to the point of u just stop going until  the symptoms get to be too much again and then u push some more...it is all so typical for what we all go thru.

Good luck on Thursday and do look at our list of drs to see if urs is on there...I don't think so...but u never know : )

"selma"

[Terrie0406]

Really, they do, even the purple feet thing?   I dont know if my first Neurosurgeon my ortho surgeon sent me to was specialized in Chiari's or not.  I am being sent to another one this Thursday and again I do not know if he is specialized in Chiari malformations.  I was just rereading over my MRI reports and in one of them it does say there is mild tonsillar ectopia but no chiari malformation.  However, I have been surfing and reading and it sounds to me like tonsillar ectopia is a mild form of Chiari's but i am not sure.. I have the appt with the new neuro guy this Thursday and will be bringing him my MRIs to show the progression of the syrnix and the reports I have copies of.  His office says he will probably order up another MRI since the last one is 10 months old and so much is going on with me.  You can look at these MRIs and see where the syrinx was smaller and had a nice rim around it to allow flow and when I look at the slices from the last one it appears to only have a bright area of CSF flow on one side that shows up only as a dot rather than a rim. .  I was shocked when the neuro guy said it wasnt big enough yet to cause a problem.  I got frustrated and just gave up for a while but with progression of symptoms and it severely cramping my lifestyle and intruding on my life, I am at it again trying to get some answers.   Thanks for the welcome, I appreciate that. :)

[selmaS]

Hi and welcome to the Chiari forum.

The symptoms u mention  sound very familiar to chiari and syringomyelia symptoms.....

We do  have one or two members that were dx'd with syringohydromyelia....

May I ask, is ur dr a chiari specialist?...was chiari and other related issues ruled out?

I had the balance issues and fell and the injury sustained required surgery....

"selma"