Chiari Malformation Diagnosed
Posted , 5 users are following.
I'm 34 years old and I have been having fainting spells and bad migraines since I was a baby. The doctors thought it was epilepsy. At the age of 13 I started my symptoms again fainting bad migraine chest pains. Now I have back pain,neck pain, tingling on my shoulders arms and legs. I get a heavy feeling on my shoulders. My tongue gets tingling, sometimes I choke on water. I get this sick feeling all the time, my stomach hurts daily, I feel weak, night sweats, inability to get enough sleep. I have been to many cardiologist because I have a PFO and I thought it was heart related and I guess it wasn't. My new cardiologist was suspicious about the overall symptoms and referred me to a neurologist. They thought it was seizures and started me on topomax and ordered and MRI with contrast and that's when I got the diagnosis of Chiari Malformation. To be honest I have been so depressed since knowing this I don't want to live in pain I have been trying to find a doctor to finally believe that something was wrong and I did but not what I wanted to hear. I just want to live a normal life without feeling sick. Not sure if I need surgery but with all my symptoms I'm pretty sure I'm going to need it. I have 5 kids and it worries me that I won't be able to care for them. Any advise for a mother who was diagnosed with Chiari Malformation?
0 likes, 21 replies
Kerenza julia_89059
Posted
Hi Julia,
Sounds like you've had quite a journey getting your diagnosis... Most of us can relate to that! I'm not a mother, and so can only imagine how hard that must be for you... I know how hard it is for me with no kids lol and a very supportive partner! Getting the diagnosis is half the battle though.
If you speak to your council they can give you lots of support and advice about what care and help is available to you. Some of it can help you look after the kids if needed and some of it will be to help look after you, so you don't have to rely on your kids as carers when they get older. Obviously not everyone needs this but it's good to find out early on what help is around so that you know what's out there, and therefore will hopefully reduce your stress levels.
I found joining some Facebook groups really helpful... Again you will find a lot of support and advice... All from people in your situation.
Sorry you've suffered for such a long time, it must have been horrendous for you.
Take care x
Kerenza
Posted
julia_89059 Kerenza
Posted
Thanks for the information as this is all new to me. Yes it took years to finally know that I did have something and I wasn't making up all of this. It sounds so debilitating after the symptoms starts and that's what has me worried since I'm not getting any better. I will make sure to join some support group and the AnnConroy Trust web. Thanks again
Linleel julia_89059
Posted
I went in to my doctor's office and told them I needed a brain MRI cause I had all these symptoms and didn't know what it was. So they capitulated and ordered it up. You have to be VERY INSISTENT!. Unfortunately, this is something that won't go away totally. Even after you have surgery, you have to remember that you've had brain surgery and anything that got squished may lose some functioning. If your cerebellum got pushed too much into the brain stem, functions that that controls could be impaired as well. I've had 3 NS and am seeing a 4th one in November. My surgeon went on a leave of absence and the new doc I got stuck with finally admitted he didn't know that much about Chiari so I got transferred to someone else. (Goodman Campbell, which is a really reputable firm). It is something that not alot is known about and apparently they don't study it much since it's a "Rare Disease."
helen11122 julia_89059
Posted
You certainly have a lot on your plate Julia, I had a few of your symptoms but still took 7yrs for a diagnosis, I had decompression surgery and it has relieved a lot of the pressure head aches, I'm un lucky as have dizziness but on medication for that. Not everyone gets that after their operation. But if you have surgery you will need help as rest is most important. I'm 61 and had my op 2yrs ago, I finished working in a office before the op, but for the last yr I have worked as a domestic in our local area. Granted its only a 3hrs a day, and some days I struggle a bit, but I've always been stubborn haha. Now you have the diagnosis, next is treatment, it's not good to have this, but there are worse things. I'm hoping you get the treatment you need and can have a bit better quality of life xxxx
julia_89059 helen11122
Posted
Thanks Helen. I have an appointment in A about 2 weeks to see what are my treatment options. These symptoms are horrible but i do know what I have now it's just the desperation of going to see the Neuro to see what's the next step. I'm glad to hear your doing better. How was recovery after surgery?
helen11122 julia_89059
Posted
Mine was awful, I was sick every morning and felt it for at least 6 wks, but not everyone is like that. Some were up next day and showered, i was in hospital for ten days and think most are in 2 to 4 days, so don't go off my recovery Julia, plus your a lot younger. I'm seeing the consultant again in January as just had a mri to make sure all ok. I lost my speech for for a few days too, but came back ok, apparently nerve damage. Hubby was over the moon but gutted it didn't last. Haha I had my operation in Newcastle rvi. Are you in the UK Julia.
julia_89059 helen11122
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No im in the USA. I'm just weary that it took this long to diagnose and I just don't want to have to keep going through these symptoms they are not the greatest. It's draining I'm not myself anymore.
helen11122 julia_89059
Posted
No I completely understand where your coming from, I felt the same. I was made to feel like I was making it up, and getting passed to different Dr's as didn't know what to do with me. And it was by accident a spinal consultant did a scan, and he noticed this chiari malformation. I do feel like I have a bit of my old self back, but surgery is to prevent Condition getting worse, not a cure. Sooner you get treatment , hopefully make you feel bit more positive. X
Linleel julia_89059
Posted
I'm in Indiana. I was in the hospital 4 1/2 days. As soon as I could walk, get up and go to the bathroom with my walker, get dressed and take a shower, and get off pain meds for the most part, I was ready to get out of there! Not that it was bad being there. But just ready to go home. My biggest problem post-surgery was being nauseous. I had to get nausea pills that dissolve under your tongue for that because I couldn't take pills with water. I had a lot of apple sauce, pudding to put my pills in. And still got sick. That goes away after a week or so once the fentanyl and other drugs are out of your system.
Linleel julia_89059
Posted
I would recommend the decompression surgery. You may still have some symptoms after, but it relieves your brain from being squished. You need a Neurosurgeon who knows what Chiari is- many don't. Also would be useful to know how far your tonsils extend into the spinal canal and if any CSF is blocked. I had surgery 3 months ago and had almost immediate relief of symptoms (apart from recovering from surgery). I've had some symptoms return at a lesser level (dizzy) but not continuous and I have a slight headache. But overall much better. Research what you can about Chiari. There isn't a ton out there. These forums are also a wealth of information!!! Hang in there!!
julia_89059 Linleel
Posted
After surgery were you able to work? I work right now but my symptoms are daily and I feel weak all the time. I feel like I'm just feathering away. But financially I need to work. That's another worry I have on top of my children's care.
helen11122 julia_89059
Posted
Yes I'm actually doing few hrs a day in hospitals as domestic, I worked in government offices before op. But if you have surgery you will need to rest for good few wks or months in my case. It depends as everyone recovers different , and depending what your work is too.
Linleel julia_89059
Posted
I'm a portrait artist so 3 weeks after surgery i had a commission to work on. But I couldn't do a regular job where I have to walk or have energy. I can do computer work and painting and thats about it. Course I am still only 3 months out from surgery so apparently have more time to build up strength.
julia_89059 helen11122
Posted
Thanks for the information. I'm in such pain right now would hate to be on painkillers. I love my job but just waking up and being at work is draining since I'm always nauseated and have stomach pains. Daily neck pain so we will see in 2 weeks how bad it is. Thanks for all the information
julia_89059 Linleel
Posted
I see, I'm just debating whether to keep working or stay at home. My worries are my fainting spells I just blackout. I do feel them coming on but the after effect is horrible on top of that I have a PFO. Not deadly but it is a heart condition and mine is grade 5 the largest size. I'm just mentally drained to much to think about.
Linleel julia_89059
Posted
Stay at home. Enjoy your kids. You can probably get disability income. You don't want to be out driving and having blackouts!
julia_89059 Linleel
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So very true. 😊