Hard days

General
1

For those who don't know me, I am glad you are here and I offer to help in any way that I can. I would also like to say welcome and a little info on me; I was decompressed approx 2 years ago, I still have some difficulties as like the rest of us there are good days and bad days.


Bad days is what I want to talk about. For awhile I have been down in the dumps and hard on myself. We all have bad days and sometimes they last more than a day and with each passing day frustration grows which builds negative thoughts.

The question is how do you bring yourself out of the dumps on the bad days? I can tell you from my experience bottling it up does not work nor does ignoring it like it is not happening. so again how do you deal with the bad times.

2

Michael

I am asking myself this same question lately. I will be interested to see how ppl reply. Im a firm believer in positive thinking leads to a positive life and try to live this way. Its really hard when physically you cannot do the things you need to do. Its so hard not to live in the negative, especially on these days. Im sure the others can offer you more, but at least I can tell you , you are alone :)

3

Hi Michael - I have had two decompression and a third surgery for a C2 laminectomy and now I am tethered what appears to be on the patch at C2-C3 area. I also have slightly elevated intracranial pressure and am now taking Diamox.

My days are always a mixed bag with 1-2 days a week that I feel really good and the rest of the time I have terrible neck pain, both shoulders need surgery (I was told that in the near future I would need to have shoulder replacements done on both of them) and thus my neck and shoulders kill me.

I do a lot of research while listening to music to help me through the bad days. I am also doing a lot of writing. I have started my own memoir and I am also working on a screenplay. I also just got a puppy and he is adorable! I am not going to lie, he has been so awesome for me.

Spending more quality time with my daughter has helped me out tremendously. We started her in gymnastics (she is4) and it has forced me to get out of the house. It is difficult to do because I never feel like going, but once I am there it feels good. I think sometimes, forcing myself to do something helps me even though I am in pain.

I have also made it a point to find time to have a date night with my wife at least once every two weeks. Just going to dinner or like today, going out to Ihop for breakfast was so enjoyable. It gave us time to talk.

I have not been on here much lately because of all the garbage that I have been going through. With that said, I am going to try and get back in the game.

For me, dealing with the bad times means music, writing, doing research on the issues that I have, getting myself out of the house, talking with others, and trying to do some form of exercise each day (mostly just walking) for a little while helps me out quite a bit. I also have photography and fishing as an outlet.

It is not easy. My wife tells me all the time that I am too hard on myself. I am very lucky to have a wife who understands what I am going through and who walks with me no matter what direction Chiari/Ehlers takes me... Without her, I don't know if I could handle the bad days. I wish everyone had someone in their life who treated them the same way my wife treats me. I know that she helps me through the bad days. I don't know if any of this helps, but it works for me most of the time.

I never give up in totality. I might give up for a while, but then I am searching for answers shortly after. I guess you can say that I just try to be the best I can be. I know that there are going to be more bad days than good days, but I have learned to cherish the good days much more. I only have one life and I am trying my best to always stay positive.

Wishing you all the best,

Jeff

4

I too had decompression surgery 2 years ago Feb 7, 2012.. It took a full two years to fully recover and I am still recovering some yet today. Has anyone had pain in the back of the head where the titanium plate is? I do. It can be be very tender at times. I also had C-2-C-7 cleaned, scraped and screwed. I already had C-5 & C-6 fused and had a a cadaver bone put in place. So my surgical scat was from the middle of my shoulder blades to my head. I looked like Frankenstein. And of course, my daughter had to take pictures. I had all my work done at Wisconsin Chiari Center, by a doctor who specializes in Chiari surgery, people come from all over the country to see him. He is fantastic.I am lucky to have a patient husband to suffer through all my surgeries with me. I was also a special case because I have a rare blood disorder called Protein S which causes my blood to clot. I have to be on blood thonners the rest of my life. But for surgery, you have to stop your blood thinners and get two shots of Lovenox a day to keep your blood from coagulating. Just more complications for the doctors.

5

Michael,

I have not been on in a long time; although I do read the posts often. I had my decompressions in September (original) and November (patch repair) of 2012, about one and a half years ago, when I was 62 years old. My NeuroSurgeon told me it could take up to 2 years to recover - meaning the best it would get. I am glad he told me that, as it helps me to not expect a full recovery yet, and I also realize there is no full recovery or cure from Chiari. As I see with most on this site, there are good days and bad days/weeks. I have spent the last year and a half trying to determine when to push myself, when to pull back and rest, and how to accept the "new normal" my life has become. What has helped me the most is my faith and trust in God, praying, a daily gratitude list I keep, where most entries begin with the words "I am thankful that I had the strength to...". Children/grandchildren are the best distraction of all! Sometimes just the thought of an upcoming activity depresses me and makes my head hurt, like preparing for a camping trip, which we often do, but then when I am finally there away from the normal routine, it really gives me a boost and it's like what Mr. Teach said below about taking his daughter to gymnastics that forcing myself to do something helps me even though I am in pain, especially when you are doing it for someone else.

I appreciate your honesty because it helps me so much to know I am not alone on those down days/weeks. I really believe that because of the position you are in as a moderator that you can help others more from what you yourself experience. Thanks for being there so many times for the rest of us!!

6

Hi,
My son, Ben, had decompression surgery, Feb. 2012. He was sick at the age of 13, and continued to get sicker, and then became bed ridden. Finally they did an MRI and it showed Chiari malformation. It seems started growing in adolescence.
This Easter was the first time in 5 yrs, that he was able to do activities with his cousins. I’m beginning to see a difference in him after the 2yr
mark from surgery! No Dr told us about the, 2 year possible recovery.
But does make since. My other son broke his back at 22yrs and was paralyzed for months. It took years to recover just because of bruising of his spinal cord. He does walk, but with a cane and he got improvements up to 5 yrs. So I figured the Chiari malformation of Ben’s, was pushing against his spinal cord, which caused swelling of the spinal cord, the pressure at that certain point, caused him to be somewhat car sick, nausea, no energy, stomach pain, depression, etc. So I’m hoping he continues to get better… to 5 years, like his brother. It’s been a long few years of seeing your child so sick! Just don’t ever give up!
Deanann
thttps://m.facebook.com/story.php?story_fbid=10152209294929410&id=110869099409affect it. The part of the

7

Today is my bad day. I had surgery march 27th. My headaches are in the front and top. Ibuprofen does not help anymore. I went to yard sales this morning and drove. That all wore me out. I go back to work may 12th. If I am getting this from yard sales what will it be like back at work?

8

I would recommend not going back to work yet. You need your rest. Your body went through hell.It needs a break.If you push too soon you are going to have more problems. It takes over two full years to fully recover. To even recover to a more normal state I'd say 6 months. I understand you probably cannot take that much time off, but you just hat BRAIN surgery. Take off as long as you can see if you can go back pat time and bring work home. . You will see, you are not ready for work.Even when we think we are feeling great, thrtr is a lot of mechanical stuff inside repairing itself, so please please take it easy.