How to support a loved one

Brain and nerves
1

Hi, my girlfriend was just diagnosed with type 1 chiari after years of different health problems many of which we now understand could be related. The doctor recommended surgary, and can't say what this is likely to help with in regards to things she's already suffering from.  

the last few weeks have been really hard on her. It was good to have a diagnosis finally, but with so little information what the surgery might actually help with, she's having a hard time committing to it. She scheduled the surgery (in two months), and will probably go through with it, but in the meantime not just her physical condition is getting worse, but mostly her state of mind is. 

I'm a little lost about what would be the best way for me to offer support. I've been reading here a lot, and of course talking to her about it a lot, trying to understand more, but the truth is of course I can't really understand what she's going through. 

If people have any advice about what kind of support from their loved ones was helpful (and what wasn't), I will really appreciate it. Thanks. 

2

Hey,

you sound like a really wonderful person to have around, your girlfriend is very lucky!

I know that being diagnosed with chiari brings many conflicting emotions. On the one hand she will be pleased that someone has, at last, given her a name for this horrible condition, and then, of course she'll be terrified of what is going to happen in the future.

Can I ask how old she is and what are the worst symptoms she has?

Is she able to visit this forum herself for support?

3

Well I wrote you an entire post and it is now waiting to be moderated. ARGH!!! The thing about this site is you can't post any links to sites anywhere. Which is too bad cause I had lots of useful information and I can't even get that back. 

If the Doctor has recommended surgery, there is probably a potential for improving her symptoms. I had surgery June 2.

Here were my symptoms: 

Disorientation… I’d go to the store and it was extremely hard to walk around and to focus on what I wanted to buy. The walls and ceiling seemed to move. I was dizzy. I would hang onto my cart so I didn’t fall over.  I felt like I was in a LSD fugue state.

Blurred vision… I couldn’t see my husband’s face 3 feet in front of me clearly. I couldn’t read street signs.

Headache… Low constant head and neck pain.

Dizziness.. Always. Dizzy. All the time.

Mental stupor…Always in a “Brain Fog.” Described as a Zombie Stupor, I read later. My head felt like it was wrapped in gauze.

Listening… My daughter scolded me constantly that I never listen.

Memory… I can’t remember what I was going to do 2 seconds after I got up to go do it.

Exhausted… ALL THE TIME>  Always tired!!

Insomnia… Can’t sleep. Wake up at 2 am.

Trouble speaking and finding the word I want to say

Gait- trouble walking in a straight line. Feel imbalanced all the time.

Hoarseness. I sound like I have a cold all the time.I had an MRI of my brain and saw a Neurosurgeon and Neurologist and eventually after loads of tests, I got the surgery.

To help you understand her symptoms= read up on it. Read her test results and research everything.   Picture your brain as a melon. The skull is too small so the melon is pretty squished. Fluid gets pushed through your brain and pushes the melon through a hole where the spinal cord comes through. This blocks the fluid from getting through. The Melon is your cerebellum- it controls body movement, balance, orientation. It is next to the brain stem and if it gets pushed up against the brain stem it can effect that area. Surgery opens up space in the skull so the cerebellum has more room and the spinal canal gets unblocked. 

Hope this helps!!!  Good Luck!!

4

How to support her: 

1) You can expect her to be dizzy, have trouble walking straight, have headaches, have memory problems, etc. You probably will have to take on more household chores. 

2) Researching and talking about it can help her feel more in control. 

3) Surgery helps because it eliminates the blockage of the spinal canal (which is what I had the most). She may not get all of her symptoms relieved, and there may be residual brain damage. However, having had the surgery and feeling much more like my old self, I can definitely recommend it!!  

4) For after surgery: have lots of jello, popsicles, pudding and make sure to ask the doctor for anti-nausea pills that dissolve on your tongue. Nausea was my worst post-surgery issue. Also make sure to get some hydrocodone for pain. 

5) Surgery takes 4-5 hours. She will be lying face down with her face in a hole in the table- she will have a tube down her throat. When she wakes up, her lip may be swollen from laying on the tube. Face will also be swollen. Post surgery, you stay in the hospital 4-5 days until able to eat without throwing up, use the bathroom, and able to walk with a walker. 

6) At three weeks post-surgery, I was able to get on a plane and go on to a wedding. By then the worst is being tired. Pain is minimal. 

7) I'm now 2 months post surgery. Doing great. scar is reduced. No problems. 

Hope this helps!!! Good luck!

5

Hi Julia,

Thanks for you response. 

She's 33. Up to now her symptoms included sleep apnea (probably one of the hardest for her), headaches, stomech issues, esophageal dysphagia, and lately days in which she couldn't concentrate on anything (which was really bad last week, and she couldn't work or snything, and is totally fine at the moment, so ups and downs). 

I've asked her a few times about visiting forums, and she doesn't really want to at this point. She's reading a lot of the scientific research around, but so far I can't get her to look here much. 

6

Thanks for taking the time to respond so in depth! 

It's really relieving to hear how the surgery helps, it seems a lot of the reseach she's reading tries to be very careful about giving hope, and ends up being very discouraging. I'll really try to push her to read more here. 

Yes, the issue of her talking about it and through that getting back some feeling of control sounds relaly relevant and really important. Thanks for that and in general for all the info. 

7

I can understand her not wanting to look on forums. It scares me to see what some people go through. After my decompression (my symptoms were similar to your girlfriend and I was 39 when I had op here in the uk) I was up on day 3. I walked around the hospital without any help, didn't feel sick and a nurse showed me a place where I could go and have a much needed cigarette. I was discharged on day 5.

After a few months recovery I went on to lead a normal life eg: had children, good career, holidays abroad etc. I wasn't allowed to drive a car for a couple of months after op but haven't stopped driving since.

The only thing I regret (and this is where you come in with support) is that I worried so much about actually having the operation that I never took care of myself beforehand. If you could help her to prepare properly by having a really good diet, plenty of fresh air and enough exercise then her recovery will be a lot quicker.

Also, it's very easy to slip into a depressive state. Try to stay upbeat. Why not plan something really special to do for Christmas this year? By then she'll be ok and you'll both have something to look forward to.  Chiari is not a death sentence and the surgery will help her so much so if you can both stay positive then that will be all the support she needs. 

8

Thanks, that's really helpful! 

9

What is she reading that she is finding discouraging? I've done a ton of research and there isn't that much out there to see, so maybe I can give her some pointers. 

10

Thanks, I'll ask her (and encourage her to reach out directly). 

11

Hi there, I was just like your girlfriend, I detest anykind of surgery unless its necessary, the health care professional already suggested her to have operation (decompression) then she needs it, if you are in the UK, the specialist/ s won't advice for surgery if they do not need to as its burden to NHS, even in the us they won't either due to the oath (code of ethic) , I refused the advice, but then I got worst from disorientated, unaable to walk properly, sneezing/coughing was really killing me, just like you, my husband and family were really supportive, even now after my 3 months post surgery -  I had to have surgery as I could not no stand any longer  with the pain. Now I am drug free not even paracetemol, I still not driving yet, perhaps another month, but my husband and children wont let me do the heavy house cores (shopping, hoovering) they really look after me, because they read on the forum and talked to Ann Conroy Trust about the condition and they understand that the recovery period is around 6 - 7 months. So in my opinion, please do ask her to talk to Ann conroy and have surgery - THE SOONeST THE BETTER - Good Luck