Waiting and desperate for some help/information/answers

General
1

Hello all,

I’m more writing this in the hopes that I can get a little information from others experiences due to being diagnosed during Covid so haven’t actually been able to see a neurosurgeon to get any actual specific information or to ask any of my questions yet, I feel very lost and deflated because of this. Sorry if this is a little long…

I started getting symptoms; headaches, increased dizziness in simpler situations and more prominent tinnitus (tinnitus I’ve had for years but assumed it was normal so never thought about it) in March 2020. I called the GP when I had a headache for the third day in a row as that was really unusual for me on top of the dizziness and the tinnitus (dizziness was happening every time I stood up). I was given some pain relief and told to contact them back if it did not improve. The headache eased off, but later in the day I had my first near faint. This prompted the doctor to believe it was anemia, which to me made sense. I also get my fingers and toes turning purple at times which would again make sense for anemia. But due to being in the height of the first lockdown, the GP wasn’t doing face to face contact unless absolutely vital. This continued for about 8 weeks when I had to keep calling back because I was really struggling with now increased number of near faints (and normal blood pressure) and the dizzy spells. I was finally able to get the blood test. Which came back as normal.

This unfortunately rattled me, as 8 months prior a childhood friend of mine had passed away from brain cancer and her symptoms started with headaches. I relayed this to the doctor who was so understanding and said for peace of mind and as my bloods were normal to go for an MRI scan. I was able to get my MRI done within 2 weeks of him requesting it.

The scan came back with the diagnosis of Type 1 Chiari Malformation. I was sent for a 2nd MRI and was told I was being put on the waiting list as urgent to see a neurosurgeon.

Fast forward to early Jan 2021 (7 months after initial diagnosis) I finally receive an appointment in January to see a neurosurgeon at the QE in Birmingham.

6 days before my appointment, we go into lockdown 3.0 and I receive a letter saying my appointment is cancelled, with no idea of when the replacement would be.

Since my diagnosis we’re now coming up to 9 months. I have so many questions and so many things that happen with my body I’m desperate to ask if they’re related, even from when I was much younger (like pars defect and sciatica at age 15).

So I guess, if you’ve made it this far (sorry for the length!) I’m hoping for advice/experiences/information. Obviously I know every person is different and no two cases will be the same but I wonder if you are able to shed a little light, even a candles worth might help me get to the actual light at the end of the tunnel (which keeps feeling like its moving further away rather than closer).

Things I’m wondering about:

  1. Pregnancy. I get horrific head pressure and then feeling very faint when straining, whether that is lifting/pushing something heavy and also sometimes when using the bathroom. Has having Chiari affected how people give birth? Sounds daft but I’m a huge water baby and can’t wait to have my own children and always dreamed of a water birth, but am now concerned that because of those symptoms whether I will be able to give birth naturally. Anyone got any experience with this sort of thing?

  2. Travel. Being diagnosed during Covid, I haven’t been able to travel, but does this impact on people being able to get travel insurance? I have family in Spain and Florida and am now concerned that this is something that will make traveling very difficult, that’s whether symptoms get worse flying due to pressure? Or increased costs in travel insurance?

I have so many more questions but see that this is quite long so shall leave that for another time!

Thank you all for any help or information or advice or literally anything at this point that might help me spiral out of control less would be appreciated so much I can’t quite put in to words.

Suzy

2

Hi Suze,

First off, welcome to our community! I apologize that I have not welcomed you yet. I do not have Chiari but rather am here to participate and facilitate discussion. That said, I know that many people on our @ModSupport team will have valuable advice as well as our members.

That sounds nerve-racking! I can not imagine getting diagnosed in a situation like that. Are you able to do online consults with your doctor? As for your questions:

As far as birth goes, I think that it really depends on the severity of the malformation. Generally, Chiari affects motor skills as well as some other peculiar sensations. Some people will get tingly areas while others will not. Some might get headaches or other symptoms. None of these should affect your uterus. Of course, I would advise that you see an OBGYN about the development of a child as well as birth, however, I have not yet heard of a case where this was an issue. Please correct me if I am wrong.

Travel insurance is very tricky. I think that it depends on what you are using it for. I briefly looked up some options and they all had a caveat of a pre-existing condition which Chiari would fall under: “A Pre-Existing Medical Condition is an injury, illness, or medical condition that within the 120 days prior to and including the certificate purchase date: 1, Caused a person to seek medical examination, diagnosis, care, or treatment by a doctor; 2. Presented symptoms; or 3. Required a person to take medication prescribed by a doctor (unless the condition or symptoms are controlled by that prescription, and the prescription has not changed)” (Travel Insurance: AllTrips Premier Plan | Allianz Global Assistance). This is a loose definition as you can tell. I also live in the US and insurance here is very exclusionary, the UK is hopefully different.

Let me know if you have any questions! I have been tied down by school and other commitments, but I will get back within a week!

Jakob
He/His

3

Hey Suzi,
Firstly, Welcome to Ben’s
Secondly, Don’t be apologising for the length of your post. When we’re initially given a ‘brain diagnosis’ our brain’s go into overdrive and all of those questions are normal, hell, some of my posts were like a university thesis in length. All of those, what I call, ‘What if…?’ questions kept rattling around in my head and I had to get them out and who better to ask than people who have been there. This is a place to ask THOSE questions.

COVID has made things more difficult for everybody, but to be told there is an issue that needs a neurosurgeons follow up, only for that to be halted due to the restrictions, your stresses are completely understandable. Personally, being given partial information ie ‘There is an issue… …but it will be OK’ only served to stress me out even more. Then at my initial appointment it was recommended to ‘Wait and watch’ and my thoughts were ‘WHAT? I have a timebomb in my head and you’re telling me to WAIT???’ I was less than happy. So I went looking for answers. I say ‘answers’ but it was more ‘theories’ than answers and every dr had their own theories. Some were almost dismissive, but as I was symptomatic I was not at all accepting of those at all.

Being a male, I’m not going to go anywhere near your pregnancy questions, because to be honest I wouldn’t have a clue. Hopefully, there’s a female who will have more relevant experience here.

As for your insurances, ohh I’ve had some ‘Fun’n’Games’ with insurance companies and, to put it mildly, they can be very quick to sign you up and take your money, but when it comes time to pay up, they will try every trick in the book not to pay. I eventually had to go legal to get them to honour the policy, but they drew it out for as long as they possibly could. But when it comes to travel you want to be sure you’ve got cover because I know of some people who have needed medical attention, not had insurance and it costing them many thousands to get the care they required. When I travelled overseas the insurer would cover me for everything, but not my head. I didn’t need it, thankfully, but being neurological you have to be very careful. Even if you stumbled and broke your toe they could try to say you stumbled because of your head and hence void your cover due to a ‘pre existing condition’. I queried an insurer about this and asked 'What if it had nothing at all to do with my head?" And his response was (and I quote) “We have a team of lawyers who will fight it”. :open_mouth: :roll_eyes:

This may sound cynical but some of these companies can be… …let’s just say ‘difficult’.

Merl from the Modsupport Team

4

Hi Jakob,

Unfortunately the hospital I have been referred to is firstly a major trauma center and deals with a lot a military, but now on top of that, they have become a hub for Covid patients and due to this the doctors are being drafted in from all departments, so its not even that we can do a phone consultation because they are busy on the Covid wards. But at this point I would settle for an email!!

Yeah, it was more the giving birth part I was wondering about, whether it seems to be the general consensus that people either do give birth naturally or by c-section. But it does seem hugely case by case, which is a nice thought that perhaps my dream of a water birth is still possible.

Yeah, I am slightly concerned that this will cause an issue and increase the premium and then possible give the company’s grounds to challenge if I need to use it.

Thanks Jakob.

Suze

5

Hey Merl,

I’m glad you’ve said that as I just have so much going round in my mind and its driving me a little bit crazy! Not being able to have my questions answered or even spoken through is causing my mind to jump here, there and everywhere.

Exactly, I’m wondering if I can request another MRI as what it seems from having a look on here is that it is something that gets monitored, so I’m thinking pre-emptively and if I finally get my neurosurgeon appointment and they say that they want another MRI to see if there are changes because it’s been so long since the first one, then I’ll just feel like I’ll have wasted time and the appointment, and if my luck doesn’t change I’ll be waiting for another 9 months!

That’s definitely something that concerns me, and as I am a very adventurous person and my cousin teaches paragliding in Spain so I am concerned that I will struggle to get insurance that will permit me to do that which will be heartbreaking.

Suze

6

Only a little bit, well, aren’t you lucky. I drove me and everybody around me nuts. It wasn’t that I was trying to drive them bonkers, but I was trying to process it all in my own mind. At the time I knew a grand total of one other person who had been down the neurosurgical route and even then it was for a totally differing reason. There was no one who could relate on a similar level. I had sympathy being thrown at me from everywhere but that line of ‘Ohh you poor thing…’ gets really old, really quickly. I needed empathy or understanding, not sympathy.

I do have to say here, neurosurgery did change my life and not in a good way but it wasn’t like I had a choice. I could have refused surgery, but things would have progressed and the final result would have been death. So the choice was ‘This’ or death. Not much of a choice really.

Merl from the Modsupport Team

7

Haha, my mum might say otherwise!

I worry that me talking to people (limited numbers, firstly due to covid, can’t really chat to many people… and secondly I don’t want every Tom Dick and Harry to know about the ins and outs of my life), so I’m worried I am annoying them and sounding like a broken record, constantly talking about it, or relaying my concerns and frustrations. But you’ve hit the nail on the head, sympathy and empathy are not the same thing and people forget that I think, especially at the moment while everyone is going through such a tough time, so you don’t want to burden others, and people have their own concerns at the moment. But the person that I should be directing my worries and questions to, I can’t because my appointment hasn’t happened yet and feels like it won’t be for a while. That light at the end of the tunnel keeps getting further away rather than closer. Which in turn makes me want to talk to people but I feel like I’m bothering and pestering and annoying those who I do speak to.

Did you have very severe symptoms pre-surgery, or was it purely based on the amount protruding? That’s my other concern, I haven’t been able to even have a first consultation yet, so what if there are things I should be doing or shouldn’t be doing but I have no idea about. But also because I haven’t had that, your mind jumps to the worst conclusions. So did the surgery not help at all symptom-wise?

Suze

8

Hey Suzy,
My situation is a little different to yours. Back when this all started there was no CT nor MRI scans, xray was the only images available, so they couldn’t see inside of my skull. My symptoms were written off as growing pains and/or hypochondria, so I ignored it and this went on for years with my symptoms getting progressively worse. I had headaches but then as the dr’s said ‘Ohh everybody gets headaches’

So, one day I’m driving down the road and the lights went out. I couldn’t see and this was the trigger that made the medicos investigate a bit further. They did a CT scan and came out with the line ‘Look what we found’ like it was all something new. I’d been telling them for years something wasn’t right, but they were the dr’s and they knew better than I, but once they had the images, the scans, then they agreed there was an issue.
Now, I say ‘there was an issue’ but every dr I saw had a differing opinion on the impact and how to manage it. Some had the view of ‘Wait and watch’, some had the view ‘Operate and fix’, I even had one who was of the opinion to take herbal supplements to manage :roll_eyes: There are some neuro’s who are of the opinion that if the tonsil is less than ‘X’ length, then the symptoms will be minimal, but our body’s are very individual. Some people can have a minimal tonsil but have no end of symptoms, but by the same accord for some people can have a huge tonsil but minimal symptoms, which really goes to show that each case needs to be professionally examined and assessed.

“So did the surgery not help at all symptom-wise?”
My initial surgery did help with some symptoms BUT, the surgery itself unleashed a whole plethora of other symptoms, which in return has required 5 further neurosurgeries to manage. Each surgery has had it’s own effects and these have compounded on top of each other.

Merl from the Modsupport Team

9

Hi Suzy,

I’m sorry you’re having to wait so long to see a neurosurgeon. I remember when I was diagnosed back in 2010 I wanted that apt sooner than later. Hang in there.

For your question about pregnancy… I didn’t find out about my Chiari until after I delivered my child vaginally. After I gave birth I was extremely dizzy, lightheaded, horrible migraine, numbness in face hands and arms for months. I actually had horrible migraines growing up and had an MRI at 17 years old but the Chiari was missed…
Once my Chiari was diagnosed a few months after delivering, I was told I probably should have had a Csection. The pressure from pushing could have hemorrhaged my brain.
Fast forward 10 years, I just had my second baby by csection. I feel it was better because I didn’t put that strain on my Chiari. My neurosurgeon recommended a C Section because my symptoms did get worse after delivering vaginally.
I hope this helps a little.
Stay safe,
Amber

10

Hi Suzy,

I had both of my daughters well before I was diagnosed (20+ years) and honestly don’t remember having any problems delivering either of them (vaginally). Sorry I can’t help you there.

In terms of travel, I have always had problems with motion sickness as long as I can remember. My mom used to pump me full of Dramamine before any car trips and I would just sleep the whole time. To this day I have to ride in the front seat of a car or I almost immediately get sick. Same for airplanes. I now take Bonine before any plane travel or long car rides and don’t even consider boats/cruises. But I will tell you that I have traveled internationally following my decompression surgery and was OK. I was worried about an increase in pressure in my head but it was basically “no change” from before my surgery (and I still take Bonine before every flight).

I wish you all the best as you continue on your journey and hope you are able to get in to see the neurosurgeon very soon.

Take care,
Suzie

11

Hi Suzie!

That’s good to know thank you.

I’m quite lucky that I’ve never suffered with travel/motion sickness which is nice, but there I’ve only really started to get the main symptoms post-covid so haven’t exactly been allowed to travel and see if that has changed! But doing gymnastics when I was younger I never really struggled with throwing myself around so perhaps that’s worked in my favour!

I hope that I hear something soon with the announcement that we’re opening back up soon!

Suzy

12

Hi Amber,

Oh wow, I didn’t even think that could have been an outcome. Like I was more thinking about ‘just’ losing consciousness! But that’s definitely interesting to know. May I ask what your main symptoms were/are?

Thanks,

Suzy

13

Hi Suzy,

My main symptoms were headaches, dizziness, lightheaded and numbness in arms and hands. After I had my son 10 years ago my dizziness and being lightheaded got worse after delivering vaginally. I didn’t want to chance things getting worse this time around so my neurosurgeon said C Section would be safest.
I’m not meaning to worry you and apologize if I did. If I had known about my Chiari before having my first child I would have had a C Section as well.

Amber

14

Hey Amber,

No, thank you. I’m very glad for the information and grateful for you sharing your experiences with me. I’ve been fretting so much from not knowing anything at all so at least some information that, that might be the situation is better than me wondering if it’s something that I’m being over dramatic about. I’m feeling very much like I’m being over dramatic and worrying about things that might or might not be the case and then spiraling in that direction. So honestly thank you so much.

Suzy