Chiari Online Support Group

When is enough , enough?


#1

When you Chiarians are experiencing a crisis of pain and multiple symtoms when do you seek medical intervention, what is the last straw before you go get help? Do u trust your primary care physician to help you? Would you rather be seen in the emergency room? I’m asking because I’m experiencing a crisis , I’ve had symtoms for 6 days I was hoping to feel better and get the swelling to go down , but nothing is helping, I just don’t know what is considered a chiari emergency…maybe I’m over thinking this bc I know that there is an opiate crisis in America and I’d hate for them to think I’m there to get opiates… like I could care less about their drugs I need them to see what’s causing me all this trouble


#2

No, you do not trust your GP – a good GP would have referred you out to a specialist. By definition Chiari is rare and complicated and outside the scope of a GP.

You need to get under the care of a specialist with regular appointments. Going to the ER isn’t going to do what you because Chairi is chronic in nature and the ER isn’t designed to handle it and they aren’t designed to run the possible tests you need to ferret out the root of the problem.

I suggest getting to a nuero ASAP.

azurelle


#3

I must agree with Azurelle. Neither your PCP nor the ER will be sufficient to do the follow ups you need. Your PCP maybe your first contact but often their knowledge of chronic conditions is minimal. You need to see a specialist. You need a referral to a neuro.The so called ‘opiate crisis’ should not be dictating you seeking help. Yes, there are people abusing opiates, we know that, but there are also people like yourself (and I) in genuine need. People abusing opiates often go seeking opiates directly, but if you go in seeking assistance for your symptoms without even mentioning opiates, then they must investigate. There maybe other options other than opiates that the medicos can offer but please do not be ignoring symptoms due to the opiate crisis. You have to manage your own situation, not the opiate crisis.
As for the judgement of others, for those of us with rare conditions those judgements are common, but after 6 days of symptoms, IMO, its time to act.

Merl from the Moderator Support Team


#4

Rebecca, being stuck in a pain flare is the worst and I’m sorry that you are experiencing one now. Truthfully, more so than opiates, prior to my surgery a strong course of steroids were the only thing that would give me temporary relief of the pain for awhile. It can help so much to relieve the pressure that’s causing the pain. Find a good neurosurgeon with an understanding of Chiari as your main doctor in treating this, who can work with your primary care doctor. When I had a pain flare prior to the surgery, my neurosurgeon or neurologist would give me a blister pack of Prednisolone. It’s got side effects too, but at least it isn’t addictive.


#5

Getting out soapbox<<<

I need to mention that those who are treating real, actual pain, do not run the risk of addiction. The addiction rate for those with chronic pain is actually somewhere in the neighborhood of 2% – and I’ve seen stats that put it as low as .5%

Concern over addiction should never dictate your care, unless you are, in fact an addict and know it and are dealing with it as a separate issue.

Putting soapbox away<<<

azurelle


#6

Here’s why I’m at my wit’s end with the Drs , I have a neurosurgeon he’s in Eugene Oregon, I live 200 miles away and getting there requires me to have a driver it takes 2 hours to get there, and he doesn’t help other than making medication recommendations he sends to my primary who is a nurse practitioner, he’s seen my MRIs he’s seen the contrast MRIs , I have a syrinx in my spinal cord and a 8 mm herniation , he tells me the syrinx can resolve on it’s own and the decompression surgery is a 50/50 chance of going perfectly problems solved, or it causing me more pain and agony he just doesn’t know. It’s really hard I’m a mom, I am a business owner and it’s just me and my husband running and working our shops… it’s so hard for me to get the help I really need. I don’t actually care about the opiate crisis I think I’m using that as an excuse, distracting myself from the big pic … I don’t have a nuerologist … my area only has 1 and he’s not taking patients .


#7

Nope def not an addict :joy: … My biggest flaw is I distract from what I should be doing so I don’t have to stress about being a burden , getting rides to the ER, getting rides to the Dr, and putting all the work on my husband’s shoulders … I’m just really good at not facing facts … I don’t care about the opiate crisis really I just like to make up imaginary scenarios in my mind so that I change my mind and not seek help because I know the can of worms that opens up… I am in so much pain , ibuprofen, asprin extra strength Tylenol , cannabis, kratom , ice, heat, icy hot, lidocaine it just doesn’t go deep enough to kill this pain and pressure it’s like a twenty pound block on the back of my head … I can barely pick my head up and yet I’m standing up 8 hours a day “acting” at work , the show must go on… i live in a rural area with shit Drs and the only hope for a better Dr is going so far I’ll get a serious additude from my husband if I dare ask him to take me… I hate this…


#8

Getting out soapbox ?? Putting soapbox away ??
Sorry don’t understand that


#9

I can completely empathise BUT you will get to a point where its a case of either you managing it OR it managing you. It would be better for all involved if you manage it. Look, you may get told “There’s nothing we can do at this point…” or you may find a neuro with a bit of understanding who is prepared to assist. Many of us have had to deal with the damn dr’s and it’s never nice, you could see 10 different dr’s and get 10 differing opinions. But whilst you are ummming and ahhhing you never will know for sure. If things aren’t improving or getting worse, quit the excuses and get it seen to. Yes, it is a can of worms and I’m not saying opening it will definitely make things better nor clear things up because it’s never that simple. But if you never go, you’ll never know.
If you can explain to your husband that following through ‘may’ assist you in managing better, surely he’d understand that. That’s looking at it as a plus for you AND a plus for him.

Merl from the Moderator Support Team


#10

I asked for help, my friends have always offered to help and I finally asked … I went to the ER , gosh I was so worried for nothing … the ER Dr contacted my Nuerosurgeon and was instructed what to do, I had a cat scan of my brain and x-ray of my skull , the dr and all the nurses and personnel were very nice to me. I received a bit of scary news , my heartrate was 175 , I had no idea it was beating so fast my blood pressure was really high 154/97 and the radiologist found a small tear in the dura of my brain close to the herniation. I received iv pain medicine , fluids, heart meds, and something for imflamation (typo) … I have a appointment with my Nuerosurgeon in Eugene coming up ,I have to rest and stay home for a week , take the medicine prescribed , and during this week I have to go get a MRI and see Dr Kokkino . I’m going to ask if it’s time to have the decompression surgery and ask if I can go see the neurosurgeon at OSU for a second opinion


#11

Thanks Merl


#12

Hi. I had decompression surgery in Oct 2014- Chiari with syrinx. The reason I am writing to you is because I had 3 consults/opinions with neurosurgeons in the Chicagoland area. They all said you MUST have surgery because you have a syrinx-- that was the deciding factor. I encourage you to go to another surgeon. I am not completely symptom free but I wouldn’t have survived without the surgery. Good luck.


#13

No worries Rebecca, that is what we are here for. We are not dr’s, we are people dealing with similar stresses to you. We know what those stresses are like from personal experience. Anybody who tells you it’s nothing has no idea of the realities of it all, we know it because we’ve lived it too.

Merl from the Moderator Support Team


#14

They will never understand. Have the surgery and with Gods help, you could be better.