Living with partner who doesn't understand

[Lynnrae64]

Dx is September with chiari. Only 5mm, but symptoms are horrible. I am new to forum and found out in May I had cervical stenosis, spondylosis, DDD and bulging discs with nerve impingement. They wanted to fuse but I told my dr there is something else wrong. Head pain, nausea, dizzy, vertigo, numbness,forgetfulness  blurred vision, tremors....Did brain Mari found chiari. My sister had it 13 years ago. Was admitted for chiari decompression, but they had to fuse c5-6 due to possible paralysis before chiari surgery. I have to wait till I feel better for chiari surgery. My fiance has been with me, but now he is bitter since I can't work and probably won't for a long time.he thinks I should be able to, but he doesn't understand how I feel. I'm getting depressed and anxious. Don't want to leave house cause I get real dizzy, and vision is bad. I just feel alone and crazy. Just applied for disability and it's hard to concentrate on the smallest tasks. Does anyone feel like this?

[selmaS]

  I know at times it is intimidating to list our never ending list of symptoms...best bet...print out a list with ALL your symptoms on it with the most severe or bothersome at the top and work down...while at the office bring up the ones on top and give the copy of the symptoms to the Dr....also give a list of family medical history....

My sympathies on the loss of your mother...

[Lynnrae64]

I also want to mention that my mom passed away. She had lupus, scleroderma, raynauds syndrome. She passed because she had a stroke from a calcium deposit in her brain that caused it to hemorrhage. They tested me for lupus and said I didn't have that. I do have a question for anyone....I am still concerned that MS plays a part of this. My brother has it but his symptoms are his vision. My next visit is to my neurologist, but I'm not sure what questions to adk him. I feel like I'm all over the board with so many symptoms.

[Lynnrae64]

My disability claim had MANY dx, spondylosis, cervical stenosis, chiari with minimal csf flow, DDD bulging disc and nerve damage. Hopefully that will be enough with all my symptoms and I've been hospitalized 3 weeks in the past 2 months. As far as my partner, he was great when I had my first acdf surgery, he just thinks I should be able to sit at a desk job. He doesn't understand that is worse for me, even though I've explained. He really is a good man and a hard worker. He is one of those people that that feels you need to be on your death bed before you don't work. I know I need to explain to him more about what I'm going through. As far Ehler-danios, I have not been dx with that. I will look into that dx more. How are you tested for that?

[baccalynnwv]

I agree with Selma. With all the other spinal issues going on, you should look at a connective tissue disorder like Ehlers-Danlos - BEFORE - you schedule surgery. This is important to know to help prevent craniocervical instability from worsening or presenting symptoms.

I know this might sound incredibly insensitive for lack of a better way of saying it - but at least he is just your fiancé and not husband. I would wait until after you have resolved yourself towards some action regarding your Chiari before you marry. Whether it be continued treatment, or giving up on it. There is no cure. Surgery has a good success rate, but hard to find a specialist willing to do it, and does still have the chance of not working - or not all of your symptoms disappear. Chiari is going to be a lifetime battle. So, if he doesn't find understanding now, its not going to be any better in the future.

Personally, I would be suspicious of the Fibro diagnosis. If you have Chiari, chances are that is the cause of your symptoms and not Fibromyalgia. Many people with Chiari are first diagnosed as having multiple sclerosis or fibromyalgia. Not sure meds geared towards those would help chiari symptoms. I was suspected of having multiple sclerosis.

Good luck with everything. I'd have a good sit down and discussion with your fiancé and let him know what the future may hold for you. Is he going to be with you through thick and thin, better or worse? If you have surgery, you are more likely going to have to have someone there to help bath you, help you in all bathroom activities, possibly dressing, cleaning, cooking, etc. Possibly for an extended period of time. That's what a good husband will do for his wife. Is he willing to do those things for you for weeks/months....

Just tell him to get on the internet and search up his own information on it. If he cares enough he will do that - or will at least read what you have printed off for him. Tell him to look into recovery from surgery, etc.

[selmaS]

  May I ask, did your Dr rule out Ehlers-Danlos? It can appear to be fibro...I had that DX until I saw my NS and he checked for EDS and found that is what I had and not the fibro....

Disability is not easy to get, seems those with multiple conditions can get it but it took 2 yrs and a appeal with the help of an attorney......

Just reading your journal may not help your partner understand, so have him read the many posts here to see you are not alone in how you feel and not working is common with so many of us.

[Lynnrae64]

Thank you for your support. I'm not working now, was working part time, but it was stressful. I have researched Chiari and I have a great neurosurgeon who is not pushing surgery. He has now added fibromyalgia to my list of dx. My sister is doing better, but has her days. She didn't have all the symptoms like I do. She wonders if issues she has today are still chiari related. I've come to realize people do not know enough about it. It's hard for me to do anything. I think financially, it's stressing me out. Will disability approve me? That is on my mind constantly. I'm tired ALL the time and having panic attacks. Still dealing with post op with fusion and that didn't help so it's frustrating. I will try and educate my fiance. He is patient but thinks I should be able to work. I don't complain about how I feel, so maybe I need to journal it and let him read it. Thanks for your support. I hope you are doing better as well.

[Elisaandbucky]

I am also sending good thoughts and support your way. It is really difficult not feeling supported by those closest to you. I have had surgery and am in my 6th month of recovery. Your symptoms sound more involved and complicated, so I can only wonder how you are functioning. Here I am 6 months out and the supportive understanding from my family has slipped. My husband is very caring; however, there are definite times that I get the feeling I am expected to share more of the weight in the household. Can your work be done from your home? Can you work part-time rather than full-time?

Do some research to find a very clear and simple definition of Chiari Malformation and its debilitating symptoms so you can share it with family members so that they may come to understand your situation. I also wonder how your sister function with the same condition. Chiari is a difficult life to live, and having loved ones support you would ease your burden a lot. Does your sister support you? Does she live near you?

In the meantime, get to know your physical abilities and do not do more than feels comfortable. You found a very good place to speak and ask questions. The posts are really helpful when I get to feeling alone. I imagine your sense of aloneness is pretty tough. I wish you some relief and hope you get some comforting ideas from the kind people writing here.

[selmaS]

  Hi and welcome to the Chiari forum.

I am so sorry you do not get support and understanding from your partner....too many with this condition are left to deal with it alone. We do have to keep in mind there are many Drs that do not understand this condition, so it is not surprising that family and friends do not get it....most invisible conditions are difficult for others to understand. Try and get him to come to this forum to see just what you and others like you deal with daily.

May I ask, how is your sister doing since her surgery? Do you know did she have a syrinx?

Do research and locate a true Chiari specialist and have ALL related conditions ruled out b4 you consider having surgery.

Many members have expressed feeling just like you described.....it may not be Chiari alone, so do have more testing to know how your Chiari is affecting you and your overall health and so you know what else might be going on to know the best course of action and treatment.

Know you are not alone.