Double Surgery - Am I Better?

Symptoms and Treatments Surgery and Recovery
1

Hi everyone,

I very rarely post my own questions/personal stories on here; I'm more of a reader - but deep down, I know I should make full use of the community here, so here goes;

I was diagnosed with Chiari back in April 2013 - I was neither expecting it or knew how to handle it.

My surgeon is absolutely brilliant, I couldn't ask for a better team. I had my decompression surgery at the beginning of February this year and was discharged after 5 days, which I thought was brilliant! However, as a couple of weeks went on, I started to get excruciating headaches, double vision and sickness, so I went to my nearest A&E. I was diagnosed with onset of hydrocephalus. My surgeon was notified, and had booked me in for emergency surgery on the 11th March. This was to remove the cerebellar tonsils. However as this was a bit more of a tricky operation, some blood had leaked into my spinal cord - so I was given a lumbar drain from my back to drain the fluid and blood. (Sorry if this is overly gruesome!)

I ended up being really poorly, unable to move and see straight. After 3 weeks in hospital, it was discovered that I had a CSF leak in my lower spine - so I was immediately sent for a lumbar blood patch (it hurt so much, but worked instantly!).

After the blood patch I made what looked like a miracle recovery - no headaches, sleeping well, more energy, better eyesight!

Over the last few days, I've been getting my Chiari headaches back (wake up with them, when I bend down, cough etc).

I see my surgeon next week, but I just wanted to ask all of you; Have you had any complications or relapses this far out of surgery (3 months)?

I'm so sorry I've babbled on, I'm just struggling to come to terms with everything at the moment, and I'm absolutely terrified that the symptoms are coming back..

And I'm also sorry if this was too much information about the surgery - I don't want to put anyone off surgery, as I still don't regret having mine! I was just an unlucky case!

Thanks

Jessica x

2

I have been threw what u are going threw. It’s like it never ends. I thought I found a great doctor but, this one wanted to put another VP shunt back in after I had already been threw all this. I had meningitis, CFS leak and fluid on the brain too. But,I just don’t know if I should go threw with another shunt or not so I have been put threw the mill too.

3

I have not yet had surgery and am grateful to you for sharing. In my opinion, there is no overshare when it comes to the honest story of what we may all be facing. So, thank you.

4

I too have not had surgery. I appreciate your story as it is honest. Thank you for sharing. I am newly diagnosed and gleaning information from everywhere as I can. I am glad you are seeing your NS next week. I wish you well.

5

Make sure your surgeon knows of your recurrent symptoms.

At a minimum, they may want to repeat MRIs(to make sure there is no recurrent leak). this is also a setting in which I like to use a cine MRI, to assess flow around the Chiari at the surgical site(now is a classic time for scarring to worsen, causing repeat CSF flow obstruction).

The more the surgeon knows, the more data you can have at your visit(e.g. getting the MRI first takes you another step down the pathway).

Hope things turn around for you soon.

6

Thanks for sharing. I had decompression survey in January and seemed to be doing better until my 3rd to 4th month also. Since then I am having more headaches and nausea than before. My right side has slumped since the first surgery also. My surgeon thinks I have some neck issues that need addressed for my right side, but hasn’t ordered any additional testing for my headaches. Let us know what your surgeon suggests as a next step.

7

So sorry your still not feeling well. :(

Unfortunately it seems like post surgery complications are common. My situation is quite different thus far — I didn't actually have a decompression, but I was treated with an endoscopic third ventriculostomy three years ago. Unfortunately I still have pain to this day.

I'm curious if your double vision is still better?

8

Thank you everyone - I’ve spoken to my surgeon, and he’s going to rescan me. He did say it didn’t seem desperately urgent at the moment, so that’s good news.
Jay, my double vision has pretty much cleared, I get the occasional pupil size difference, but that’s about it.

I’ll try to remember to keep you updated as to what my surgeon says on Tuesday :slight_smile:

9

I'm sorry for the pain you're going through. I had my craniotomy in April 2014 followed by months in the hospital, 2 blood patches and a month in a live in rehab. Some of my symptoms have gone away, but the headaches never left and have been getting stronger over the last few months and some of the other symptoms have started returning at all. I have gone through numerous medications and doctors and nothing has helped. Please let me know if you find something that helps with the pain. Good luck!