Chiari Online Support Group

Need as much help and advice as possible

Hi

I am 17 and really need some help at the moment!

March this year I had decompression surgery. Previous to this I had severe headaches, muscle weakness, numbness in hands and feet, lots of back and shoulder problems. My surgeon, who I saw for 2 years never really gave me much information or options. Being honest, he never really made it clear to me what was wrong! I thought I was going mad, which was so frustrating as my friends and family would not believe that I actually had a problem. Following my decompression surgery, which of course was painful, I started to feel amazing - I had forgotten what it was like to be pain free!! And then two months ago my symptoms came back, but so much worse. I had lumbar punctures to see if I had high inter-cranial pressures which came out around 24, and an ICP probe which suggested high pressures but it snapped and so I was just told to go home. I have been prescribed multiple pain killers but nothing seems to touch it. I am trying hard to study and soon will be applying to university. I spoke to my surgeon recently and so he said we would do another ICP probe to see if anythings changed, which is in the next couple of weeks.

I really need some advice as I no longer know how to cope with the pain. I feel so weak admitting it but I am finding it so hard right now. My surgeon said that multiple doctors have seen me and don't understand what is wrong with me as my CSF has apparently improved. I feel so stupid like its all in my head but I know it cant be. When I lie down and bend down, I get a headache straight away, and during the night time I feel as though I will vomit if I move my head.

I really dont know what to do, and any advice will be really appreciated

thank you!!!

Omg i am literally in the same boat as you right now. I had my surgery back in march and a few months ago my syptoms came back much worse.i am in the process of doing multiple MRI’s and my surgeon also said he might have to do surgery all over again and give me a bigger patch.

I’m sorry you’re going through this at such a young age!
I suggest keep seeing the doctor you’re seeing but get a second opinion. It took me two neurosurgeons and two neurologists (2 ENTs, two months of PT, and a cardiologist) before I found a neurologist who listened to my symptoms.
You’re young and smart…you’ve got an advantage of some of us older folks.
Good luck and prayers from Houston!

Hi there Farrow1698, I see you are in the UK. Have you discovered/thought about contacting the Ann Conroy Trust as part of your support network. They have a national helpline and may also be able to put you in touch with local support network meetings. It's really, really tough waiting in between appointments and we all feel for you here.

There are also some sleep tips here which might help your discomfort at night. And something I find is GREAT for headaches (and a whole host of other things ... think middle aged menopausal hot flushes ....LOL) is 4Head. It's a levomenthol stick which you apply to your forehead .... it's cool and tingly. I think it's about £4 and available from many supermarkets and pharmacies ... Boots etc.

Hang in there, I'm sure your surgeon will come up with a plan of action. Kindest, Jules (also in the UK!)

Farrow, you’ve received some good suggestions here. I just needed to send you a hug.
You are not weak, you have an illness. I can see you are a strong young lady. You are managing your illness and reaching out and being proactive. Things will turn around soon for you. Please keep us updated.
Hugs,
Laurie

Thank you so much for this, I'll give it a try!!

Jules G said:

Hi there Farrow1698, I see you are in the UK. Have you discovered/thought about contacting the Ann Conroy Trust as part of your support network. They have a national helpline and may also be able to put you in touch with local support network meetings. It's really, really tough waiting in between appointments and we all feel for you here.

There are also some sleep tips here which might help your discomfort at night. And something I find is GREAT for headaches (and a whole host of other things ... think middle aged menopausal hot flushes ....LOL) is 4Head. It's a levomenthol stick which you apply to your forehead .... it's cool and tingly. I think it's about £4 and available from many supermarkets and pharmacies ... Boots etc.

Hang in there, I'm sure your surgeon will come up with a plan of action. Kindest, Jules (also in the UK!)

Farrow,

I'm so sorry you're going through this but please know you are not alone in your experiences. I had my decompression surgery 6 months ago and my symptoms have come back with a vengeance. Frustratingly, the doctors that I currently have are very dismissive about the symptoms I'm experiencing and it has often lead me to question if what I'm experiencing is in my head or that I'm blowing my pain out of proportion. Thankfully I'll be switching doctors soon!

I just can't stress enough that if you are not happy with the advice or help you're getting you are entirely entitled to another opinion from another doctor, no matter who you've seen in the past. You are so young and you're health is something you have to live with the rest of your life! You deserve to feel confident in the care you're receiving.

Hang in there and never ever stop advocating for yourself,

Kait

From my experience, sometimes the heavy pain killers can have some very troubling side affects. With me, they exacerbated my fatigue, dizziness and depression. It sounds like you may possibly need strong muscle relaxers. Those are not addictive and not habit forming either like pain killers (narcotics).

That is what I contribute much of some of my success to. I am on Robaxin and it seems to help at times ( not a cure all I can assure you) but does help. Also, maybe you are trying to do more than you should be doing and are not that healed up yet.
I had my decompression surgery in January of 2013. Hope you start to feel better soon... :)!