Strange goings on!

[julieg_rn]

Just an arbitrary question relating to odd problems since decompression surgery last June. I have always had major swallowing issues - gagging, choking, difficulty swallowing, and food coming out my nose (I know - DISGUSTING!!!). Unfortunately, since the surgery I have seen a huge increase in the incidences of food coming out my nose - and YES it does hurt! I have also noticed that maybe 2 months after surgery I started feeling like I had to blow my nose all the time or that something was stuck up in my sinuses. When I blow my nose the discharge is almost the consistency of gelatin. It is hard to expel and painful because I have to blow so hard. If I can't clear my nose the pain builds and builds until my eyes will tear in pain. Please tell me SOMEONE out there has heard of or experienced this. I am always the "Queen of That is a Rare Side-Effect". Thanks guys

[julieg_rn]

Also, I really don't exhibit enough signs in any category of EDS, but thanks, I did consider that previously.

[selmaS]

  It is odd how we all tend to have a diff collection of symptoms....they r similar, but no 2 people have had the same experience with this condition.

[julieg_rn]

By the way Selma - "nasal regurgitation" as it is called is associated with CM. I am surprised I never came across that lovely "BONUS", as I have researched EVERYTHING on CM. But, as I said, if it is unusual or rare be sure I'll have it, have had it, or am going to get it at some point  :) Lord give me patience and strength. I am certainly trying my best!

[julieg_rn]

I will be one year on June 14th. Unfortunately, the first 2 weeks after surgery made me very hopeful. We had planned a vacation with our two children to Disney World long before any of this happened and I told my husband we ARE taking the trip. It was 3 weeks after surgery - I was surprised the Dr. let me fly! I felt pretty good until 2 days before we left but I didn't want to ruin the vacation. I borrowed a scooter at each park so I wouldn't slow the family down. I don't go on many rides anyway so it wasn't that issue. I have a Chiari specialist at Massachusetts General Hospital. I have had nothing but problems with the assistant that works in his office. It took THREE months to get a referral faxed for gait and balance training and a pain clinic! I found a new Dr. at a different hospital and he seem fantastic - I've only had 1 meeting so far but he spent an hour and a half with me and he is very empathetic. And just so you know, I have very little faith in doctors now because of the runaround I endured everywhere in the past year. Sad - but even being a nurse and knowing the system ***** - you never realize how bad it is until you're in it! My condition continues to deteriorate on a daily basis. I have been very involved with traumatic spinal cord injuries in my work and know the realities - this scares me to death. It scares me more for my family than it does for me. I would never want my family to have to take care of me in the manner. I am at the end of my rope and only hanging on by a thread. I always say to my husband - "I'm a pretty tough person but I cannot understand how a body's heart can beat when it is in this kind of pain! This whole thing *****- I just want my life back!

[selmaS]

Well I knew we chiarians were a tough lot, but man o man u r one tough cookie to go thru all that!!

I wonder were u ever checked for Ehlers-danlos?...it can affect u in soooooooo many ways as there r 5 types u could have and it is a related condition to chiari. It can add to issues taking meds...organ and tissue problems....so I would deff have them take a look.

Some of the issues  u mention u typical or could be associated with chiari...typical such as DDD...most of us deal with this and or were dx'd with it.
and as for associated....having ur brain stem compressed will affect ur behavior and emotions it is  our control center...so ur OCD and bi polar issues could be factored in as a result of the compression......not always but sometimes surgeries can release some of the pressure to help with some of these issues.

U need to find a true chiari specialist....and have them take a look at the site of ur decompression ...see if ur odontoid is somehow affecting how u feel...do u have scar tissue...etc....

And I will add, u r still healing...u r not at 1 yr post op...and I know from my own self how diff I was from 1 yr till now!!...U will continue to heal, and have symptoms and strange things going on...but do see about the EDS....
The blow to ur head was not a good thing either...did u get checked after that?

   and make sure u have no scar tissue.

      "selma"

[AngeeP]

Julie, I too am a registered nurse with 2 sons ages 13 and 16. This chiari and syrinx have definitely disrupted my life as a nurse. I am waiting to see NS on Wed and an petrified. I am so sorry to hear of all ur issues   I will b thinking of u as u continue ur journey. May God bless u and ur wonderful family. I'm so upset that I may never work again as a nurse. I am 43 and have the balance issues, passing out feelings, and a spastic gait. Petrified of this surgery and what surgeon will say

[julieg_rn]

I have a very high threshold for embarrassment. I am, or should I say, was a Registered Nurse until this whole nightmare a year ago. I have had one health crisis after another since childhood. The craniotomy, not even a year ago, was my eighteenth surgery in fifteen years. I just found out  a little over two weeks ago that I will need to undergo another surgery within the next month because the extent of damage to the spinal column is significant and needs to be repaired before I lose function completely on my right side.  I will need to see an ENT before the surgery (at which time I will speak to him of my latest interesting issues) because my vocal cords will have to be moved during the procedure and I'm already having major problems with myvoice and sinuses. A brief synopsis: I have been diagnosed with CFS, CRPS (which used to be referred to as RSD until some brilliant person in the medical field decided to change the name - just because they could), IBS, DJD, DDD, TMD, OA, questionable FM (although I am sketchy with a dx of FM because it so often used as a blanket diagnosis), Non-alcoholic Steato Hepatitis, Pancreatitis... and the list goes on. My PMhx includes 4 small bowel obstructions (2 resulting in resections, adenoidectomy and tonsilectomy (both have which have grown back - and not to just "tags"), Bipoar D/O, ADHD, OCD, Recurrent fxs (mostly of ankles, wrists and arms), 7 surgeries between arms and wrists B/L, appendectomy (to which my appendix had grown in the wrong place from birth and I endured just shy of 2 years of ER visits before they figured it out - just before it ruptured), CCY, L4-L5 Lami, L4-S1 Posterolateral Spinal Fusion for spondylosyndesis, Acute Narrow Angle Closure Glaucoma (r/t a drug reaction to Topamax, in which case I completely lost my vision and had to get an emergency iridectomy at 3am), PTSD d/t vision loss, Granuloma Annulare (a rare skin d/o), ... Maybe you get the idea. I have always picked right back up, dealt with the blows and carried on. Most of the smaller surgeries I was back to work the same afternoon or the next morning. This has destroyed my life. Everyday something else rears it's ugly head. I just found out five days ago I need to have an endometrial ablation but I am opting to have an IUD implanted temporarily to help until I can get past this next spinal surgery.  As I said, NEVER ENDING!!! I am so at the end of my rope. My poor family is destroyrd. Htank God I have an amazing family who will keep sticking by me - I would have left by now - actually I wish I could leave me  :) I have a wonderful husband and 2 beautiful kids - 10 (son) and 22 (daughter). We adopted our daughter when she was 12 - the same year we had our son.  Amazing how birthing a child just doesn't seem to change the feelings you get from such a miracle. My kids worry sooooooo much, as well as my husband. I got hit in the back of the skull last Friday night by a fly ball at my son's Little League practice. It hurt incredibly so I ran and hid on the street side of the dugout hoping that he wouldn't have seen it. But he did see it from across the field and came bolting over like lightening. I tried to stop crying before he could see me but he instantaneously put his hands on the top of his head and kept crying "Why My Mom?" over and over. The pain is unreal and inhumane but I would deal with this pain forever as long as I knew my family would be out of distress. My daughter graduates this Friday from college and I know she'll be more worried about me having to endure a 40 minute car ride (which is WELL worth it to me) than thinking about her own HUGE accomplishment. The guilt is horrible for what my family is going through. I always worked and took care of the house, and did the shopping, and shuttled the kids around... now I can't even drive because of the near fainting and balance issues - nevermind that I can't move my right side. I will stop bitching because I am very lucky and have so many blessings. I just feel that I have paid my dues - enough already! I have read quite a few of your posts and you are very knowledgeable. You will encourage people to hold on and pray for more out of life. Thank you for that.

[selmaS]

  Hi...I get the runny nose, but not the issues u r having, sorry...goodness...have u tried an EMT to see what else is going on...many times the sinuses r involved, and u may have a diff sinus issue than what many with chiari deal with...in the 2 1/2 yrs on this forum I have not heard the issues u r having brought up b4.

  That is not to say someone does not deal with it, but many r reluctant to share some issues....or all issues bcuz of how we r made to feel just expressing our concerns to our own drs, and family....but I am so happy u shared this with us and I hope it gets someone to admit even if it is in a PM to u that they too have had to deal with this.

    "selma"