Chiari Online Support Group

Fed up and feeling down


#1

Hi guys , I was only diagnosed recently and my neuro sent me for a cervical MRI and bone scan and I go see him this Friday for the results. I have a few things going on at the same time.i was diagnosed with my C6 and C7 completely degenerated and pinched nerves after a car accident in October 2017 hence the CT on my neck and was being treated for that,then due to many other symptoms and it getting progressively worse I was sent by my GP for Brain Mri and they found a slow growing growing meningioma,saw a neuro for that and he said I had Chiari but was 3-4mm which is when he sent me for the neck MRI and bone scan. I’ve been getting progressively worse and am on pain meds and muscle relaxants and anti depressant.i have had so much time off work since October and have to have today off due to feeling nauseous,bad headache and my neck is killing me.sorry for the long post but right now I am so worried I about the time off I am having and so over feeling like this that I needed to vent to people who are going through the same thing. My husband is being supportive but at times I think he thinks I should just keep trying to pull through it which I am doing but I’m exhausted.


#2

You may want to do some research on Chiari and car accidents/whiplash/concussions. It sounds like the car accident may have been the catalyst for several things and you might feel like you have a better handle on it with some facts to back up what you’re feeling.

Also, assuming you’re in the USA and have been with your employer for at least a year you’ll want to look into FMLA as you work through this. Assuming you qualify it will protect your job for 12 weeks while you deal with appointments and treatments.

azurelle


#3

Hi azurelle , I’m in Australia and already going down that route.
It’s just such a long slow process and thoroughly frustrating.
I want a miracle doctor to tell me that they can fix everything with one operation but I do know that’s a fantasy.i have researched Chiari and whiplash but I think I may broaden the search terms as you said to get a better understanding of everything … thank you


#4

Hey Lee,
I too am in Oz.
“I want a miracle doctor to tell me that they can fix everything with one operation…” I too wanted the same thing and in fact had one tell me exactly that, but that one surgery has turned into 6 (so far). So although surgery may ‘fix’ an issue I have to inform you that it can trigger off a whole sequence of events, a bit like the differing dr’s sending you for differing tests then telling you of differing diagnosis as you’ve already found. I strongly wish for this not to occur for you but do forewarn you it does happen rather frequently when it comes to the brain. Brain science is not an exact science and I recommend that if you find a good neuro, KEEP THEM, because they all seem to have their own opinions that differ vastly. If you do find a good one I’d recommend taking your hubby along with you to an appointment to hear the dr’s view.
Best of luck with it all, cos this can be a long arduous journey.

Merl from the Moderator Support Team


#5

Thanks merl , I was advised to see a few neurosurgeons , I’m in Brisbane and seeing DR Webster at the moment and not sure of any others at the moment


#6

I’m in SA and I can tell you the neuro community down this way is fairly small, trying to obtain a TRULY independent opinion was very difficult. Each would refer back to the initial diagnosing dr’s report and recommendations. I found one dr who blatantly told me nobody within the AMA membership would go against the initial diagnosis/report. It wasn’t until I collapsed that emergency surgery was conducted, prior to the collapse I was told “ohh, just wait…” Wait? for what?
I have found that these dr’s all have differing opinions and this is why I say “…if you find a good neuro, KEEP THEM…” because if I wasn’t confused and stressed enough at the start of this journey, I’ve certainly made up for it now.

Merl from the Moderator Support Team


#7

I am 6 months post shunt n chiari surgery and still having issues. I am in the process of going on a disability retirement from work. Doctors don’t get it and just look at you like you are nuts. I am tired of going to them. I won’t am not even going back to my neurosurgeon at Hershey Medical Center in Hershey Pa. I made an appointment to go back cause of my issues n he said no I only do surgery. Go see your family doctor. I even asked before I went there if he was a chiari doctor who deals with chiari and was told yes. Now that the surgery is over he wants no parts of being a doctor just a surgeon. Well I told him I wouldn’t go back to him if he was the last doctor on earth. The reason I am telling you all of this is no one cares how any of us feels. People with chiari are treated differently I am finding. You look ok on the outside so everyone thinks nothing is wrong with you. You aren’t crazy. I went through this same thing. I had to learn to take care of me. It was hard and still is. Every 3 to 4 days I am missing 1 to 2 days of work myself. My neck gets stiff and I get pain n bad headaches then the brain fog makes me feel like a zombie. Well I just have to take care of me on those days. So I totally can relate to how you feel. I wish you better days ahead


#8

Hey Wrumble,
As with many of the Ben’s Friends Network pages, Many of our ailments are invisible. You state “…People with chiari are treated differently I am finding…” I can assure you it is not only chiari. I often explain it like this, when you have a condition people can see it seems easier for others to accept. For example when you have a sore leg, you may limp, your gait maybe affected and people can see the physical effect. When it comes to invisible conditions there’s often very little outwardly signs or those signs can fluctuate massively from day to day. I’ve lost count of how often I’ve been told 'Well, you could yesterday. So why can’t you today…".
Like you, I’m fed up with the medical fraternity and now manage all of this for me, not them. I was told, “They operated, they fixed…” But if this is ‘fixed’ then I’m another word starting with ‘F’. It took me years to find a specialist who agreed and I now have a digital copy of his supporting report. If I need to have reports for any purpose I now use his. I am sick and tired of having to explain, then re-explain and ‘reinventing the wheel’ with every dr I’ve had to see. I now have my own medical file with all the relevant/supporting details and reports, minus the non-relevant.

The long and short of all of this is, as you state “You aren’t crazy” and we comprehend and understand that fact. I say it again “We are not in this position by choice, who on earth would choose this?”

Merl from the Moderator Support Team


#9

Thank you for responding. I am fed up with Dr.'s so bad. I have as I said 3 or 4 good days then It goes belly up. Like I was hit by a bus. I am very frustrated. I don’t like hearing others are suffering too but, it’s nice to know I am not crazy n suffering alone. Does it get better? I know somedays I am very negative but most of the time I am positive. I keep hoping one day I wake up and it’s all gone. I know it won’t happen but it’s nice to think it. Thanks again.


#10

Hmmmm? How to answer this??
OK, Look, for some, yes it does get better but by the same accord, for some it may take some time. I’m certainly not one to be giving guarantees. I’ve had the misfortune to under go a few neurosurgeries, each has been totally different in post surgery recovery and results. None have resolved my situation, in fact my last 2 really screwed me up, that was 5yr ago and ‘seemingly’ I’m still recovering, cos I’m sure as hell no better. I have done something really stupid… …I questioned a surgeon… …they don’t like being questioned.
So now, I do what I can (which isn’t much) but I know for me if I really sitdown and think about my own situation there is a great big pit I can easily fall into. Me and self pity have been best of friends before and that’s a pit I don’t want to go back to again. I cannot change this reality, I know, I’ve tried. So I try to move on (somehow), it is not easy, not at all. But I can stagnate or have a change of focus. Sure I do fall back onto self pity every now and again but I know, for me, I can’t stay there. I have a bit of a tendency of going “Poor me, poor me, pour me another drink” and I crawl inside a bottle and try to drink reality away. Not good. I have to move on.
So yes things can get better, but if they don’t we still need to learn to manage for ourselves, learn to manage the symptoms, learn coping skills, learn our own triggers and learn to move on. It ain’t easy but we must.

Merl from the Moderator Support Team


#11

Yes, I did the beer bottle thing one night myself. It only makes it worse so I don’t do that either. I am in the process of taking a disability retirement at work. Does anyone know how hard it is to get disability social security? I am a few years short of retirement age. I barely make 3 or 4 days a week to work. I hope to hear in another week or two from them.


#12

Being that you’re in the U.S. I can’t really comment on the U.S. systems(I’m in Oz) but I know here it was REAL difficult. I had a neurologist who wanted $1500 to write a report, at the time I didn’t have the $$$ to do so. When SS called him he was a complete %^$#@, he just wanted the money. I was lucky in that I had an insurance policy. They sent specialists from interstate to do an assessment, he was a professor of neurosurgery and his report was very supportive of my situation and the insurer paid up e v e n t u a l l y (it took a year), but I got my money. I now use that professor’s report as supporting documents. I had to re-apply for SS and used the profs report to do so and it was accepted.
Now I will advise you on one point. I had to prove Total Permanent Disability, if I could have worked 2-3days/week they would have said I can still work and therefore not eligible. They looked for any way around not paying.
Others on these boards have had experience with the US system and maybe able to give more relevant information, but I have found that if you give them ANY doubt, they tend to reject out of hand.
I hope that helps and best of luck with it all.

Merl from the Moderator Support Team


#13

Thank you sgain!


#14

Hi there

My name is treston. I recently got my decompressuon done im from SA aswell i had many opinions im originaly from jhb but i did my surgery in kzn… i found a really helpfull and informative NS. He even went as far as helping without me having medical aid… if you still looking for help and support ill be glady to refer him.

Its been a long a dificult road stress levels pain stifness and even emotionally feelin down… i know the struggle.


#15

So sorry to hear about what you are going through, Lee. It is frustrating, trust me I know. My primary physician has me undergo a depression screening to see why I am depressed, as if the Chiari and Syringo are not reason enough.
Anyways, best piece of advice I can give you is watch your weight, as it will only bring on more depression and exacerbate your situation. Food is easily accessible, it’s legal and extremely comforting. So, if this is an issue for you, try and walk and be very aware of what you are eating.

Also, since I have been diagnosed about 5 years ago, I have got into some crafts, mainly crochet. My life is pretty sedimentary and my husband encouraged me to get into hobbies or I would probably spend all day eating. I realize financially this it not possible for all. Also, i see that you live in Australia, so not sure what is all involved in having you prepare for a different life at home, and not working.

Also, don’t let your doctor trivialize (textbook) the size of your herniation. Mine was small as well, but damaging enough to cause syrinxes throughout my spine. The damage is probably done to my being diagnosed at 40 years of age. So now, things are pretty irreversible.

Be proactive with your spine. Here in the states, the doctor’s get only an MRI of a portion of your spine, (example: only the cervical spine, only the thoraxic spine, etc) then…it has you going back playing detective trying to find out what area is of your spine is the worst/or has any issues at all.

Meanwhile, you are paying them an office visit copay every time you visit and probably on the cusp of losing your job at the same time due to so much time off from work.

So, translation…push to get an MRI of the whole darn spine. It will sting a little in price, but speed things up a lot.
Again, try and get into some hobbies and be very assertive with your doctors. It is your health. Good luck to you, friend.


#16

Stay strong i have brain fogs also most of the time i cant remember many things and i feel stupid i cant dance, play games, or do anything in order i cant process or learn i quickly forget ill prag for you ok.