Chiari Online Support Group

Newly Diagnosed - Does everyone have surgery?


#61

I am with you. I had a shunt put in n recuperating. I still have headaches n head pressure. Noise is horrible in my ears. It’s actually worse.


#62

Hello Newly,
I haven’t had surgery and I was diagnosed about 3 years ago. Still have symptoms but I decided to hold off on surgery. Still not sure if and when I will but as long as I am able to function ok I want to wait.


#63

I was diagnosed in January 2017, initially I ticked the “un-diagnosed” option on this forum because while they spotted the Chiari malformation they still believe that my symptoms are caused by migraines so no plan for surgery.

My problems started in March 2016, got worse to the point of blacking out during headaches in January 2017 which got me admitted into hospital. I was in a cardiac ward since they wanted to see if my heart was causing the problems, the heart was ruled out, so I was passed over to neurology.

While I won’t name names some of the NHS is pretty awful, it took 24 weeks to see a neurologist and since he got my patient history wrong (he had me down as 1-2 headaches a month that last 1-2 hours, it was more like 2-10 and longest was actually ~140 hours) I didn’t have much confidence in the rest of his diagnosis! I was discharged too with no further followup needed…

I guess in the UK case that unless there is clear evidence of obstructed CSF flow no surgery is performed irrespective of symptoms. The problem with that thinking though is that the test (MRI) is often made when there is no headache too, which is one thing I have seen often in the NHS, far too much reliance on spot checks rather than continuous testing. For example a family member was on end of life and rated 3 on the Glasgow-Coma scale (lowest), I communicated with her and filmed this showing it to the doctors, the problem was that they did all their tests while she was unconscious getting the not-unexpected result of no response at all.

Still pursuing a reasoned diagnosis for my headaches and other symptoms, so its ongoing.


#64

Be sure you see a dr. that is very knowledgeable about Ehlers Danlos syndrome. Go to the best. Some geneticists are not up on it, be very careful.


#65

All of that stress cannot be good for you. You will find something else that deserves you!!


#66

Did the pt find out about your misaligned jaw through an mri? My brain mri shows my jaw is pushed over to the left by an inch. I can’t stop clenching and have constant pain. I’ve got three open cracked fillings and I won’t go to the dentist because it’s too painful to have my jaw opened that side. What is the pt doing to help your jaw?


#67

Hi Stephanie, I think you are asking me correct?


#68

Yes. :slight_smile:


#69

Any work done by a PT made things worse. I had some work done on my jaw by a specialized osteopath that works on brains. Long story short he felt that I need to work on trauma issues before reassessing the jaw issues. My body couldn’t handle the manipulation because of my nervous system. He may send me to a jaw physiotherapist down the road.

I appreciate the work that the osteopath has done.
This for sure isn’t an easy fix!

Like you I can’t open my mouth for dental work. I would have to be put to sleep. I’m a diligent flosser so my dentist last summer said I’m not doing any harm by not having a cleaning done. (Can’t even so that!)

My next MRI was supposed to be next April but symptoms getting worse since Dec - so waiting on outcome from recent Mri from my neurosurgeon.

I was really thrilled to be accepted on this Chiari support group but don’t seem to navigate well - and am missing out on the comradery of those that have Chiari.

Now trying to settle in and set priorities - one being to be more connected to this community.

If you have specific questions please ask.

Hope your having a good day.

Thanks for reaching out.

D


#70

deld, re:

If you have any problems at all navigating the site, please just shout. You can contact Moderator Support for assistance by clicking on the avatar on this post. You will then see some details plus a blue ‘Message’ box up on the right-hand side. Click on ‘Message’.

When you’ve written your message in the box provided, click on another ‘Message’ sign underneath the text box to send.

Christina from Moderator Support


#71

Thank you for your reply… interesting an osteo that works on brains! Did you get the results of the new MRI?
Have you read the symposium on Intercranial Hypotension from the CSF foundation? I’m trying to get my records in order to get a referral to a neurosurgeon on that board.
Im pretty sure I have spinal dura leaks. I’ve got stage 3 disc degeneration in the cervical bones and the edges look pretty sharp. Wouldnt be surprised if I have multiple leaks.
About the dentist/jaw, I have now lost my whole filling bewteen two molars so I use a water pic at night to clean out the cavity. Excruciating. Regular people/doctors just can’t imagine the pain and depth of these disabilities. Hang in there.
Maybe you can try Diamox? its suppoed to help with intercranial hypertension, but the symptoms from hypo end of being the same problem: pressure build up!


#72

Hi - even thought I’m corresponding with you - if anyone else sees something here that they can relate to please feel free to chime in. I believe this email is seen by all. Still rusty on knowing how to navigate. Someone from the site company has asked to help if need be - THANKS

I’ve not read the symposium on Inter cranial Hypo tension but will do!

My MRI cam back with findings same as last April. He mentioned that the chiari and hydrocephalus are the same. Feb 16th 2018 was the worst I’ve ever felt and on that day made a decision - not sure if I shared this in a previous email.

A little history. When I found out that I was going to see a neurosurgeon back in Nov 2016 I went back to a way of eating that had helped me feel better in the past. All my symptoms except bad headaches went away and I was convinced I didn’t need EVT! I was lying on the operating table and as soon as I saw the surgeon I asked if there was any change in my most recent (week before sugery ) mri. He said no. I didn’t know much about the Chiari at the time. The emergency situation and why I was having surgery was because of aqueduct stenosis. If I had a full blockage it would have killed me.

Fast forward to Feb 16th. I thought… what did I do that made me feel so much better that I was convinced hydrocephalus was reduced and didn’t need surgery?!. I’ve come to appreciate that even though it seems I don’t need surgery - haven’t had an MRI on my spine and don’t know if I have a cyst. For example - For the first time last night my numb right toe ended up being numbing past the ball of my foot. From looking at the symptoms - I may or may not. Surgeon didn’t say that the chiari is blocking fluid.

I’ve been eating very well and doing more research. I definitely have inflammation in my brain and think along with the chiari - this makes ripe conditions for my condition. Jackkruse.com neurosurgeon - info there helped me validate my thinking.

I’m going to investigate further - example testing for Lymes.

And I’m going to read a book called “Dirty Genes”.

My husband just brought in the mail - and seems the neurosurgeon wants to see me. Have an appointment March 26th. Interesting!

Seems I’ve had Chiari from birth but the blockage in the acqueduct was recent - unless it was missed by the radiologist - and the MRI station has closed and not able to locate the MRI from 10 years ago. :frowning:

In my case - because I have months of feeling pretty good and then months of feeling terrible with weird stuff, like swollen face and tongue, sores on back of my throat, terrible vertigo, changing frequency tinnitus and pain in my ears, numbing hands and feet, a shaky back just below my neck across, base of my neck so much pain and here’s the real odd one - when I’m falling asleep I have 2 weird things that happen - Jolts - I hear a snap somewhere in my neck and or I have this vibration thing in my head for a count to 40 through out the night, fatigue and joint pain. Also in this round of being sick for 2 months for the first time lowered blood pressure and symptoms that go along with this - still in the healthy range 96/66 though.

Now that I’m starting to feel better again - I’m bent on finding out what I can do to relieve my signs and symptoms naturally.

Enough about me. It’s hard for me to imagine the pain and suffering that you are going though. I’m so very sorry you are going through this. What an ordeal - it sends shivers up my spine just thinking about what you have to do every day.

Spending a lot of time typing is stressful, so hopefully I’ve made sense

How have things been with you this week?


#73

Yes, deld, this is a post on the public board and can be seen by anyone who navigates here, whether they are a member or not. It’s unlikely, though, that anybody would find this page just by googling.

You sent your post reply via your email. How do I know? There’s a little envelope icon to the right of the post. The result is the same as if you had logged in, gone to the page, and posted on it.

To send private messages between you and another member is easy: click on their avatar (green circle with a d in it in your case) and then on the “message” button. That is private communication, and although it looks very similar to a public post, you will see that the reply button says “Reply privately”.

Someone from the site company has asked to help if need be - THANKS

You’re very welcome! We’re happy to help: that’s our job. We aren’t really a site company though: Ben’s Friends is a charity that owns and operates a network of thirty-six sites for people affected by rare conditions and diseases. It’s donations that keep the lights on here, and we are all volunteers.

Let us know if there’s anything we can help with. Our email is at the top of the home page, modsupport(at)bensfriends.org .

Seenie from Moderator Support


#74

Hi tazz, I know this is a bit of an older Post, and I hope your feeling better but just wondering the name of that book?


#75

Sorry, but there was not one book but several that I had read over a span of time. I got them out from the library. The gist was limited to no added sugar and flours. Some were more restrictive in terms of carbohydrates from fruits and vegetables some were not. I did find that there were a lot of books out there that are more on the end of pseudo-science. I also came to think that diet changes are not a magic bullet but supplement an over-aching lifestyle change towards balance. Good luck in making changes for the better


#76

I agree, totally. Especially with those Chiari Centers. I have not had surgery, as I am not a candidate for the surgery. There are too many complications within my cranium due to Craniosynostosis.


#77

Hi. Sorry so late in replying, the crazy weather has me only out of bed for potty breaks… I guess your neurologist appointment is tomorrow ?
Please let me know hoe it goes. It’s been hard to look as the screen with the migraines. So had to end here. Sorry. Let me know


#78

Hi Stephanie. The dreaded migraine. So sorry!

My neurosurgeon spent quality time w me - showing me pics from my Mri. I don’t need surgery. I feel managing symptoms w regards hydrocephalus and Chiari is doable. I do have discs in my neck that are issues and a Curvature- assuming this I’ve had from birth also - saw the report on this today.

He doesn’t feel my swollen eyes, ear issues and vertigo are connected to need for surgery. He didn’t talk about how to

Manage my issues or what possibilities could be causing them.

I’ve got some things I’m investigating. Im about day 35 of a very strict eating to see if my issues are related to inflammation in my brain. Also looking at other stressors they trigger this as well.

I’m almost 100% positive that I’m on the right track.

I thought of you today - very kind of you to check in - when you are feeling so I’ll! How are you now?


#79

My 37 year old daughter just diagnosed…she has lost function in her right leg and hand, surgery scheduled eom…im learning too!! Scary road


#80

I’m exactly like you! I’ve been vegan for two months and feel great. Excercise every day. I’m the glass half full person! Professional with two kids and live a fast pace life. Like you I’m fortunate to have good days and bad but refuse surgery. So nice to hear your update. I was diagnosed this year 3mm herniation and headachs/apnea/ADD.