Anyone have constant swollen glands in your neck?

Hi everyone! Looking to see if others have constant problems with swollen glands right behind and below your earlobes, along your jawline and in your neck in the front and back?? I know it has to be related to my Chiari but just not sure how? Has anyone had their doc tell you why this happens? Is it caused from swelling at the base of your skull? I don't know about anyone else, but since the Fall weather has hit here in Washington state, I've been down for the count! I suffer so much more in the colder months with constant swelling in my head, neck and shoulders and daily headaches that vary on the pain scale. Very "tippy" as my husband says :) and lots of brain fog. Thank goodness I am able to stay home and rest since I was awarded my disability this summer!! I feel very blessed to be able to do that. It's kind of joke to me that the docs look at my MRI's and say that everything looks fine since my surgery.....CSF is flowing now....surgical site looks great. Well....I'm not fine by any means! Oh wow....sorry for venting....having a rough day :( Please let me know if anyone is dealing with the swollen glands issue and if you know why.

God bless~

Susan

Susan,

I have constant swollen lymphnodes, especially on the left side of my face and neck. At first one Neuro didn't know what was going on and had me scared out of my wits with the thought on Lymphoma and had me gey a biopsy on one of the nodes. After I went ti TCI (The Chiari Instute) and spoke to Dr."s who knew what the were talking about they explained that your lymphnodes are a passage used by your body to drain excess fluid. Even CS Fluid when you have excess on your brain your body tries to find other passages for the fluid to flow and there for through your lymphnodes. I even had a PT that tought me how to drain my nodes before I had my decompression surgery this past St. Patrick's Day. Hope I helped ease you mind a bit. Definately a CM symptome and may take a while for your body to realize that your CSF is flowing properly and doesn't need alternitive routes any more.

Much Love and Many Blessings,

Crystal

Hi Abby! Take a look at what the docs at TCI told Crystal about the swollen glands!! Makes total sense now!! I'm so thankful that I found this place to meet all of you and hope I can help others in some small way! Praying for you too :)

Susan

Abby said:

Susan

I have swollen lymph nodes in my neck, especially when I am sick with a cold, or stressed. It is listed as one of the Chiari Symptoms in the ChiariOne symptoms list. No one has explained it to me yet, but I am with you on that one.

Hope you feel better soon.

Oh my gosh Crystal!!! That makes complete sense that they would be draining extra fluid which would include CSF!! Mine are swollen every single day sometimes more then others, but never have a day that they are not swollen and hurt. Thank you so much for answering my question. The sad thing is that I could have gone to 10 different docs and none of them would have known the answer. I've been told I'm probably "coming down with something". Give me a break.....we now our bodies better then anyone but these doctors seem to get offended if you challenge what they say. You made my day!

Take care girl :)

Susan

yes i have them and no doctor can explain it. and ive been told exactly the same thing as you regarding CSF flowing,surgical site looks great,etc,etc, well then WHY do I FEEL LIKE CRUD all the time??? “oh I cant answer that” ARGHH what can u answer then…im going to have to apply for disablilty im a nurse in a hospital…Ive gone from full time (before surgery) to part time only and now to as needed only…i guess i still like to think i help other people even though I dont get much help for me…but its getting the best of me…I now have seizure activity (have had one grand mal and now im on seizure meds) my seizures now more involve the left side of my body for some reason,my left side of my face starts twitching then gets numb,then it travels to my arm which twitches and thank goodness now on medication,it stops at my arm…im so sick of being sick ands tired

My daughter is having decompression surgery in a month. She has been complaining of pain below her ears right where her lymph glands are and also her jaw/front of her neck. I did not realize it could be from the Chiari but does make sense. I am sorry to hear of the continued suffering that is borne from Chiari that some of you endure. A big thank you to everyone for your discussion question and all your responses. I am learning so much from everyone and am grateful to have found you all!

My best to your daughter with her surgery! The pain she is experiencing below her ears and jaw is surely related to her Chiari. I have the same thing. I'm glad that we found this site for support!! It helps so much to know that we're not alone in this journey and please let me know if I can answer any questions you or your daughter have about the surgery. Mine was in 2009. I know it is a scary process so if I can help in anyway....I'm here for you :)

Susan~

MrsK said:

My daughter is having decompression surgery in a month. She has been complaining of pain below her ears right where her lymph glands are and also her jaw/front of her neck. I did not realize it could be from the Chiari but does make sense. I am sorry to hear of the continued suffering that is borne from Chiari that some of you endure. A big thank you to everyone for your discussion question and all your responses. I am learning so much from everyone and am grateful to have found you all!


Hi Mary! So sorry that you are still suffering!! I'm like you.....sick and tired of being sick and tired!! I guess all we can do is take one day at a time. I know how hard it is to give up a job you love (one of the hardest things I've ever done), but I just couldn't do it anymore and it's such a relief to be able to stay home and take care of myself and not have the pressure of going to work when I'm suffering. I wish you the very best and please let me know if you need to vent :)

Susan~


mary anderson said:

yes i have them and no doctor can explain it. and ive been told exactly the same thing as you regarding CSF flowing,surgical site looks great,etc,etc, well then WHY do I FEEL LIKE CRUD all the time????? "oh I cant answer that" ARGHH what can u answer then..im going to have to apply for disablilty im a nurse in a hospital..Ive gone from full time (before surgery) to part time only and now to as needed only..i guess i still like to think i help other people even though I dont get much help for me...but its getting the best of me..I now have seizure activity (have had one grand mal and now im on seizure meds) my seizures now more involve the left side of my body for some reason,my left side of my face starts twitching then gets numb,then it travels to my arm which twitches and thank goodness now on medication,it stops at my arm..im so sick of being sick ands tired