Post Surgery Concerns

[GnnyLynn]

Good Morning!  I am looking for a neurologist, in south central PA area, who has experience in and/or specializing in Chiari Malformation.  My surgery was almost 3 yrs ago and in the past year, on and off, I have been experiencing pain and pressure similar to that of the pain and pressure prior to surgery, drainage of fluid (not mucus) in my throat, dizziness, very weak shoulders, arms and legs, etc.  It is disconcerting that I cannot locate a neurologist in my area that specializes in this particular area; at least not advertised that they do anyway.  Any and all help is VERY MUCH APPRECIATED!!!  

[GnnyLynn]

Thanks so much!  I will be sending The Spoon Theory to my friends and family. : )

[selmaS]

No worries, just glad u r back and please ask for help with navigation...I had a problem when I first started, and there r areas I still have problems with : )

LP= lumbar punture

I did post on the other thread u posted as I also had a draining issue.....and I do believe it was sinus...


Welcome Back!!

"selma"

PS- The spoon theory is a good reference...we should repost it : )

[GnnyLynn]

I am sooooo sorry I did not respond to your responses back in Jan '10.  I am still trying to figure out this site.  SelmaS, you asked: "Have u had a recent MRI?...LP?...were u checked for other chiari related issues?Like a syrinx, tethered cord, EDS, PTC...DDD, stinosis?"  I haven't had an MRI since 2007, post surgery, and I am not sure wht LP and others mean (I'll have to investigate these).  I am not sure if I was checked for syrinx or tethered cord, hopeful though that they check for these things now.  The drainage has not stopped for the past year - comes and goes, but not stopped. I also have nausea with it - but that is understandable.... I use to tell my kids not to swallow flem when they had a cold or they would have a sick stomach. : )   I do not intentionally swallow this "yuck", it just flows on its own.  I'm a mess and very frustrated that it takes so long to get answers and/or no answers.  I have been told to exercise more - how can i do that when i can't keep my balance.  I have been told to see a rhuematologist - did that and they say exercise more, see previous statement... This is terrible!  I read "The Spoon Theroy" by Christine Miserandino and CRIED for myself thinking, "wow, she did that to explain her lupus symptoms to a dear friend, and here I am just now realizing my world with these symptom".  Anyway.... here we are another day.

[pdxmomof3boys]

sorry, meant to type "SO SORRY GnnyLynn that your symptoms have returned".
Doing better, but still on narcs :)

[pdxmomof3boys]

Hey Selma,

Didn't your drainage go away after you decompression? Or did it go away and come back with other issues? Just curious, because for the first time in years, mine is finally gone. I am so afraid of symptoms returning down the road...GnnyLynn that your symptoms have returned.

Just a note that my NS did dozens of decompression surgeries, but did not advertise it. You may just call around and ask if they have such patients on their caseload and what their course of treatment is. You never know. My NS was amazing and I'm glad it was him cutting into my skull! Best of luck to you :)

Rosemarie

[selmaS]

Hi and welcome to the Chiari forum.

AS most here can attest to u may need to travel and may not find a true cahiri specialist in ur immediate area.

There is a Dr in Western PA...Pittsburg....This dr is a NS, but can most likely referr u to a NL that he knows is familiar with Chairi....and I believe his info is on our specialist thread....use this thread as a starting point, but do ur own research on the drs as some may not be true chiari specialists, but members have been treated by them and liked them.

Have u had a recent MRI?...LP?...were u checked for other chiari related issues?Like a syrinx, tethered cord, EDS, PTC...DDD, stinosis?

Some chiari can return and it can be a result of one of the above mentioned conditions or, just that u have been slow to become symptomatic of the related conditions.

I also have that drainage....feels like post nasal drip.....

Is ur NS that did ur surgery in ur area?.....mayb he can also sugest a ML that he works with for u.

"selma"