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Mon, Mar 30 8:41pm · Klippel Feil Syndrome: Ear molds and getting a good fit in Hearing Loss

Me too. Surgical ( 7 surgeries) and several from birth and malformed throughout!! 3 other surgeries for cervical rib removal and a subclavian artery birth issue tho related to Klippel feil. Very nice to have the car amenities as I cant turn my neck at all. I turn from the trunk but at 53 that is getting very sore too!! Be safe out there!!

Mon, Mar 30 7:23pm · Klippel Feil Syndrome: Ear molds and getting a good fit in Hearing Loss

Dear Mary; I'm grateful too!! I don't often love social media because I get stressed if I miss someone's birthday on Facebook or who knows the many things that stress me 🙂 but I truly enjoy communicating with you and I too feel a bond! Are you considered an essential worker? I'm fortunate to be considered permanently disabled ( well, I don't know how fortunate that is; but for now it is). Do you experience much pain with Klippel Feil? If so; how does it manifest? I still drive and am fortunate to have a very good relationship with my ex husband ( truly we only divorced because we both grew up in extremely dysfunctional families and just didn't know how to cope with life in general). But I have a car that has a back up camera and mirrors that blink or beeps when there is a car alongside of me. So I am very lucky there. It is raining here in the Pacific northwest as usual!! I'm waiting for a sunny day. Hope you are well and I am glad to have found you! Take good care out there, julie

Sun, Mar 29 9:16pm · Klippel Feil Syndrome: Ear molds and getting a good fit in Hearing Loss

I'm sorry to hear all that you went through!! It had to be extremely difficult to have a mother who had extreme highs and lows. I think children need that security or we will end up being walked on; dismissed and unable to say no. I definitely want this virus to go away but truthfully, for me personally, I've never felt so free!!! Because of how we were raised I feel like I can never say no; responsible for things that I haven't even been asked yet; so having the excuse of not being able to go anywhere and do anything feels incredibly freeing to me!! I hope you will look into therapy. It isn't for everyone perhaps, but I don't think I would be here now without it. It really is eye opening to see the physical things I've been through and to know without a doubt that they were much easier than the emotional. The dr I am hoping to see is a dr Lee in Pennsylvania Pittsburgh university hospital? Or Pennsylvania university hospital. John Y K Lee; a neurosurgeon. I have enjoyed talking with you very much!! Let's keep it up. Stay safe and healthy!! I'm glad you get to enjoy kids from afar. I love my 2 grandkids but I know my own daughter was affected by the many surgeries I had one every year for 10 years. She is now 30 with 2 kids ( I only have 1 child) and I think she understands more now that she is a parent. Of course guilt makes me want to do more than I really am capable of but right now since she is happily married and 2 hours away; I can't go over there. Life is difficult!! Ive never found it easy and try to stay as positive as possible but it is not always possible. You are a warrior!! Much love, Julie

Sun, Mar 29 4:35pm · Klippel Feil Syndrome: Ear molds and getting a good fit in Hearing Loss

Sorry about that but I still send my love and well wishes!! Stay safe out there; warmest regards, Julie

Sun, Mar 29 4:30pm · Klippel Feil Syndrome: Ear molds and getting a good fit in Hearing Loss

Hi Mary; so good to hear from you. I was raised in upper Michigan by an alcoholic marine Corp father!! Work work work was the order of the day. It wasn't until I was married and had to have a c section with unknown complications giving birth. Thankfully, I gave birth at the University of Washington's medical school and they looked further into the complications and found the severity of the Klippel Feil. I was immediately put in a halo brace ( FULLY AWAKE!!!!!) and had multiplie surgeries! I'm actually in the text books as such a rare and severe case.

I truly am thankful that it was found later in life because there simply were no hospitals or physicians capable of doing the delicate surgery in the upper mid west and I had parents as you described that basically said I'll give you something to complain about!! So I just stopped complaining of the severe headaches and inability to move my neck in certain ways that caused what I can only describe as electrical pain. Now we know that having no odontoid was causing the electric type pain and any fall or car accident could have killed me immediately.

I have been through radiation for thr tumor however it has not shrunk at all. It is an atypical meningioma ( that is what they think as it is in such a difficult location that I cannot even get a biopsy). Normal meningiomas can be dangerous due to their location as mine is; however typically they grow very very slowly. If they grow so slowly they call them benign. Mine is growing faster than the typical meningioma but not so fast ( thankfully) that I still have some time before it invades the entire cavernous sinus and covers my carotid artery. There is a newly developed 3d surgical procedure that was approved in late 2019 that only 3 hospitals in the United states have the equipment. I have had my records sent to Pennsylvania but can do nothing until the coronavirus is completely over. It is difficult to live in pain all the time but I really try to look for positive things like my grandchildren ( I have 2 and absolutely adore them). Yes, I often cry myself to sleep because there are so many things that come with Klippel Feil and I've seen so many specialist who obviously want to be helpful but they simply don't know enough about Klippel Feil and the sequelae. My brain tumor went undiagnosed for so long because they thought 5he KFS was just getting so severe that it was turning into ankylosing spondylitis and that was causing the cluster headaches and swollen eye and right side of my face. So I do try to keep positive when I can!! Cry when I need to and take it day by day! Please tell me more about your upbringing…I spent 25 years in therapy. Yes, 25 for PTSD…but it truly was a blessing because I could not have coped with all of the surgeries if I had not had the support of therapy. Living with an abusive alchohol marine was probably way worse than any medical condition that I've been through! Much love and thought of kindness and strength to you! Your fellow warrior, julie

Sun, Mar 29 12:01pm · Klippel Feil Syndrome: Ear molds and getting a good fit in Hearing Loss

Hi Mary; I'm glad you are able to get the things you need for your hearing! But yes, I was wondering how you were diagnosed and does it relate to Klippel Feil? Stay safe out there!

Sun, Mar 29 4:27am · Klippel Feil Syndrome: Ear molds and getting a good fit in Hearing Loss

This is very interesting. I have what is known as mirror movement in my hands. I can actually use both hands to write my name and if you put the 2 papers together they match up: one hand is writing backward the left while the right is writing normal!!! They always said it was from Klippel Feil. Fortunately, I can control my hands and arms from simultaneously moving however not when I was more intricately tested for my brain tumor. Both hands just did the same thing. This surprised the neurosurgeons until they looked into the many anomalies that accompany Klippel Feil syndrome!

Sun, Mar 29 4:21am · Klippel Feil Syndrome: Ear molds and getting a good fit in Hearing Loss

This is extremely interesting to me!! I was told that I had abnormally small ear canals due the the Klippel Feil; but due to a recent ( I think but now am wondering) brain tumor and radiation, I have a great deal of ear wax coming especially from my right ear ( this may be because it is the side I lay on most. It seemed to have worsened after radiation. Where are you getting the tubing and how was it diagnosed?