Chiari Malformation type 1

Hi, I read your post with interest as I too had this terrible tightness in my chest. It was in fact the only symptom I had for several years and why I too wasn’t taken seriously for years. It was so bad that it would come on very suddenly and I would find that I was rooted to the spot for several minutes before I could manage to walk on. It terrified me each time and I did have a period when I had panic attacks. It was only when I started to have pain in my upper back (after 9 years) that I was finally sent for an MRI scan which showed that I had developed Syringomyelia. My scan had been passed on to a specialist in this field and he telephoned me to explain to me exactly what I had and he said that it was very serious me that it had to be addressed and that he would give me maximum of six months to think about it! . Needless to,say I didn’t wait and I had decompression surgery shortly after which was a hugh success. I am left with damaged nerves in my back and I take Lyrica twice a day and sometimes three times a day when the pain gets bad. I also have a patch for my back each night.
Your son has all the classic sights of Criari1and he need to have decompression sooner rather than later!.
I am in the UK and I was extremely lucky to have had a fantastic surgeon. I was 59 when I had my surgery 13 years ago.

To everyone out there who has Chiari Malformation of any kind, please do research on the disease and see if the surgery is right for you and your family. Ask lots of questions, and demand answers.

We didn't and here's my post of why we should have dug deeper and got answers, instead of listening to a doctor who likes and has a Gods complex.

My husband who is now 37 had his first surgery at age 33. The shunt stayed in his head for 6 months and became infected, and he had to take really strong antibiotics to get rid of it. Once the infection was gone they placed another in his head, a couple of months went by and his mood started changing towards his family. He had to get that one replaced because it stopped working and the doctors claim that's why his attitude changed, but when he had it out I had my loving husband back. Now he has another one in and his attitude is worse now than before. He has pain and itching at the site area, and the doctor will not listen to the stress I am going through as well.
Everyone might think I'm being selfish or insensitive about his pain. I would love for him to be pain-free, and to be the loving caring man I know he is but this thing (shunt) that's in his head has really changed him, he has no regret or remorse. At times, he doesn't treat or look at me like his wife I'm more of a stranger to him.

Now I'm waiting for his doctor to contact him for further testing before I call a Lawyer to see if I can force the doctor's hand.

My husband doesn't remember exploding, or how he treats people, and when I try to explain he starts crying and says some crazy things like....."I want to leave him, or I'm treating like a baby," and a lot more. My husband needs help with this shunt to see what its truly doing to his brain, we (wife and step-child) needs help with the stress we are going through due to his mental change.

Please, please get answers for all your concerns, before you think about doing any type of surgery.

HI, @david33 - thanks for sharing this experience you and your husband have gone through. Sounds very difficult.

I've moved your post here where you've posted before about chiari malformation, to update the members here and provide a place where a number of members are discussing this condition and can provide input and support.

Have you had the chance to get a second opinion from another medical center on how your husband has done with his shunt? Or, has the social services office of your current hospital been of help to you in this process?

Any zipper heads here lol , just a friendly joke but if u have chiari Hello !

Hi @duke77 - Welcome you to Mayo Clinic Connect. You may have noticed I moved your post to this existing discussion chiari malformation so that you can connect with others who have similar experiences. Simply click VIEW & REPLY in your email notification to get to your post.

I'd like to introduce you to @kariulrich @anorwalk @tracyeylens @luckygirl @david33 @denise32 @jillweinandt @oh_suzie_q and others in this discussion. I'd also like you to meet @johnbishop.

Will you share how you discovered you had a chiari malformation?

Thank you !

Sorry @david33 I've had numerous stent, and adura, decompression surgery and a vp shunt which helped a lot I was out of my head until having it done but I'm back lol that was my first surgery and the chiari was found on a routine mri !

Hi @duke77 -- I would like to add my welcome to Connect along with @lisalucier and other members. I don't have any experience with chiari malformation but found a site that gives a good explanation of the diagnosis and treatment options.

Chiari malformation - Chiari & Syringomyelia Foundation
-- https://csfinfo.org/education/patient-information/chiari-malformation/

I also found a success story that I thought I would share.

No Longer Just Surviving: Chiari Malformation Surgery Produces Better Days
-- https://globalgenes.org/2015/04/12/no-longer-just-surviving-chiari-malformation-surgery-produces-better-days/

Are you able to share how you were diagnosed and if any treatment or surgery was suggested?

I was having headaches really bad and passing out I should tell u I'm 58 never had anything wrong except diabetes t1 and appendicitis removed, then when I hit 49 everything seemed to catch up to me the chiari, an ADD which should have been picked up while I was young,my first surgery on this journey was a vp shunt witches drained the csf , before that I was passing out and served head achs that was when I spent 3 mons in Albany med , then numerous stents 3 and then a decompression, dura, neck fusion and my next 3 months stay a month in hospital and a month in service rehab with a yr of ot and pt 3 times .

Yes I have but I'm afraid my outcome was not that good so I will spare u the details, just fine everything there is to know about it knolage is everything !