Chiari Online Support Group

New to Group & Recent Chiari Diagnosis - lots of questions!


#1

Hello!

Hope you are all ok. I’m new to this group; I came across the group when Googling about my new diagnosis. As I’m sure all of you have/had… I have so many questions and I can’t stop thinking about what may or may not happen. Heres my story:

I have had pressure like headaches for as long as I can remember and dizziness also - I thought this was normal, but since having my daughter in Aug 2017, I began to have a dramatic increase in pressure like headaches and dizziness, alongside new symptoms. In June last year, I started having visual disturbances - flashing black and white dots across my eyes and double vision (reading is quite hard now!) - so I just assumed I needed new glasses. But having seen the optician my prescription hadnt changed nor had my vision, she suggested going to my GP, for ?migraines. Whilst awaiting my GP appt, I began to lose clarity to my thought processes, and no short-term memory - literally the worst brain fog i have ever experienced. This, to me, is my absolute worst symptom, and is the reason I went to the GP. As dramatic as it sounds, I just felt like my brain wasn’t working properly - I have always been ‘on the ball’ and a ‘quick-thinker’ but now, its like I’m walking around in the dark 24/7, waiting for a light to be switched on - I know what I am trying to say or do, but everything is a delayed response, and day-to-day conversations are so draining now as I’m having to try and concentrate so hard. I find I am now very sensitive to light, and will have to hold on to things around me whilst my vision returns and the woozy feeling passes. For months when I have discussed my symptoms (pressure like headaches, literally feels like my head is being squeezed/dizziness/visual disturbances/brain fog/forgetfulness/memory loss/inability to concentrate/fatigue) people have put it down to ‘baby-brain’ but I just felt it was more than this. My GP initially treated me for migraines, all meds tried made no difference to any of my symptoms, so, to be thorough, he referred me for an MRI. My MRI scan in Nov 2018 showed a Chiari Malformation with a 15mm herniation. I then saw a Neurologist at Salford Hospital (I’m from Manchester, UK). He discussed my symptoms, and my MRI with me and stated that he feels I require surgery but that it is not his decision to make. Therefore, he referred me to Neurosurgery and requested a CSF Flow MRI, which I had last Saturday.

Do you think the Chiari malformation is causing these symptoms? And are my symptoms ‘significant’ enough to warrant surgery if the neurosurgeon agrees with the neurologist?

If I didn’t have surgery, is it likely these kind of symptons would progress?

Does anyone have experience of the waiting times of Neurosurgery appts, scan results and potential surgery in the UK?

I had an epidural with my daughter - could this have made the Chiari worse? Or at least made my symptoms worsen?

If my CSF flow is normal, is it unlikely that I will need surgery? Or is a 15mm herniation an indication for surgery?

We were hoping to have a second baby this year but obviously plans have changed whilst I await a neurosurgery opinion. But which is safer for me… to have surgery (if needed) then more babies, or to have babies then surgery? And will I have to have another caeserean section (I had an emergency cs with my daughter) and would I have to have General Anaesthetic?

Now I know about the Chiari, is there anything I can’t do? Is it ok to fly on planes?

Sorry for the essay of a message and sorry if any of these questions are daft! I just feel so clueless and the waiting in between appts when I have no idea on whats happening is driving me mad!!

Thank you so much for taking the time to read this.

Best wishes, Amy xxxx


#2

Getting a diagnosis is reassuring yet scary at the same time. Good luck in finding your answers. Your slew of questions is a bit daunting but I can definitely relate to your symptom list and progression. I have found lots that have helped, including surgery. Read lots here and hopefully you find more peace in knowledge collection.


#3

Amy,

You make the decisions on whether or not you have surgery; you and no one else.
That said, I think the doctors are on the right track. Some facts that I used to base the need for surgery follow:

  • The cerebellum (lower portion of brain including cerebellar tonsils) is the portion that controls motor skills/functions. When it is compromised other areas can be compromised as well; my brain stem was also compromised.
  • Limited flow/flow voids can affect the overall health of the brain especially over a lengthy period of time.
  • Anytime I stressed my system physically it worsened my symptoms (this included getting angry or upset).
  • I am single and self-supporting, so I needed to correct the Chiari issue to maintain as much of my good health as possible to continue working.
  • My Chiropractor mentioned that when nerves are compromised they can lose their ability to function.

The surgery is difficult to get through, but it can make things better; not perfect. Had I not had the surgery I would have remained in the misery of the unattended Chiari Malformation 1.

I waited for a year after my surgery to be more certain of whether or not I may have post-op complications. I did not and so at 53 I went to college and got an AAS degree; life does go on and Chiari will always have to be managed.

Gabby is wise. Gain knowledge and continue to visit this site; then you can feel more grounded and able to manage your situation.

Take care Amy.


#4

Hi Robin,

I have a lot of those things too, my decent is smaller (3-4mm), so you can feel like that with any size, I’m on tons of Morphine (tablets and liquid) and Topiramate…I’d really recommend the Topiramate for the migraines although a lot of people don’t get on with it but it’s helped me a lot, just like you I tried everything for them and that was the last (but most harshest drug) left. But I didn’t have any side effects in the end at all and I’m on a high dose of 75mg morning and 75mg night. It’s also known as Topamax. It’s really helped, if you want something to talk to your gp about in the mean time.

Anyway, surgery! To help you put the surgery into perspective. My neurosurgeon wouldn’t offer me surgery at all, this was at Kings College in London and my neurologist told me it’s because the minimum surgery criteria is 6mm. Therefore, in their eyes you are over two times their minimum surgery criteria, that’s why he wants to do it.
For more perspective though, my gp told me, in his lifetime as a gp he’s had 5 people (not including me) diagnosed with chiari and none of them have had nor wanted surgery!
Also- side note, apparently most of them were in their 40s when they got diagnosed?

From my perspective, however, I have had this for 6 years, and have horrific right shoulder blade pain (every second of every day), neck pain (most of the time) and those awful migraines (most days), then all the other little things being/feeling sick, light sensitivity, dizziness, pins and needles, eye things, tiredness, ear pain and noises, etc.
I Would have surgery 100%. I would have surgery because of the shoulder, neck and head pain, - the rest, the other things I listed I could happily live with forever in comparison.

All I’d ask is would you be and feel happy and comfortable living the rest of your live as you are, with the symptoms you have, take away the worry of knowing it’s chiari, it’s about YOU.
If it’s yes you’ll be happy then you don’t need surgery, if it’s no, like me (which is why I put all that) then you should have it. Because if you said you didn’t want it, the dr would tell you signs to watch out for, for if things were getting worse…just as a precaution!

And on that side of things, the main things that can get worse, are you can get a block or restricted flow of your CSF and the drop can get lower/bigger. But that’s all I’ve read about and be told by the dr, and wheather you had the surgery or not, I’m pretty sure, with a 15mm drop they would give you yearly scans to makes sure nothing has changed, or I would talk about yearly scans when you see him next.
Lastly the only thing I read you maybe shouldnt do (some doctors say it’s ok, some say no) is things that put pressure on your head, like bungee jumping, sky diving, some even say giving birth naturally? But I read this big thing about the giving birth where some had C sections and some did it naturally. It was inconclusive to be honest, it was a medical research journal. But no I don’t think you have to have general anaesthetic, worse case scenario would be C section, like your daughter. But from the papers there were women with way bigger drops then you and they gave naturally. Oh and nothing about planes, your good for planes!

I think I’ve covered everything there :blush::slight_smile:

Now just ask yourself that question, because it is only you that can decide, obviously surgery would be scary to say the least but if you chose it then it’s worth it for you and what you need. And if you don’t then your symptoms clearly aren’t worth going through all that, and if they aren’t, don’t let yourself be pushed around by any neurosurgeon, I know they can be quiet forceful and abrupt at times, but if you don’t go for surgery just remember to say about the yearly scans and remember that the choice will always be there if you change your mind. If you do all you have to do is get re-referred to Salford by your GP.

I know this was long but I wanted to match yours :blush:
I hope I’ve helped a bit…in some way :confused::grimacing:


#5

Thank you all so much. All your advice and experiences are greatly appreciated. If given the option I honestly don’t know what to do. For me, I can cope with the headaches/pressure/fatigue/dizzyness (to an extent) but the constant brain fog/blurred vision/memory loss is now impacting me on a day-to-day basis and affecting my work. Its so frustrating! Although from reading through all the resources on here, surgery isn’t guarenteed to fix anything, but on the other hand I don’t want any symptoms to progress either. Thanks once again for all your responses! Xxx