Hey Dawn,
Balance has been a BIG issue for me. If I stand too quickly or stand and move in one motion, I get dizzy, I see bright stars in my vision and my legs go out from underneath me. My wife has had to catch me on a few occasions.
Six months is still fairly early on in your recovery. I know a lot of dr’s will say things like '…it should all be back to normal by now…" and sure, for some people things do settle relatively quickly, but for some of us it can take at least 12months to ‘feel’ normal or anything close to normal. Personally, I think we learn to adjust to this ‘New Normal’. I can’t be standing and moving all in one motion. I need to stand, then wait till the dizzies abate, then move. But even when I move, I have to be thinking ‘What can I grab to stabilize myself if needed?’. This was all very foreign to me. It used to be ‘Get up and go’, now, I’ve got to plan.
Some days it’s no problem at all and some days it’s all overwhelming. I just never know.
Thank you so much for your comment I thought I was going crazy again no one understands. This group really is helping me with peace of mind , everything you said is what’s going on with me and I know it’s only been 6 months hopefully things will get better thanks again for your response!!!
And that’s why we are here.
Other’s don’t understand, how can they? We understand because we’ve lived it too. Brain surgery isn’t just an assault on the brain, it’s an assault on the whole person and we all recover in our own time. You CANNOT make your recovery quicker, I know because I tried. I pushed myself to recover, doing myself a greater injury and ended up back on the operating table.
One thing I have been forced to learn is the word ‘Slowly’. Recovery takes as long as it takes and the slower you take it the better the recovery outcome.
I had a lot of issues after I ruptured with my balance among other things. And then I’d have to retrain myself after the follow up repairs it seems. I liked Tai Chi, a lot. It seemed to help my brain reset itself. I did find this https://www.flintrehab.com/balance-exercises-for-brain-injury-patients/. I learned a couple of months ago that my eyes and my brain sometimes get crossed signals. It didn’t dawn on me that it could be a culprit as my eyes have checked out fine. However, I put some cedar boards up on the small wall of the master closet and wouldn’t you know it, the stainless steel screw heads are not in the straight line I thought they were. It has something to do with using my dominant hand and switching to the other…a question for both my ophthalmologist and neurologist.
I had 5 PEDs put in 7 years ago and I still have balance issues. As was said “new normal” and I try to work around it. I’ve been given great advice here and I slow down, don’t rush getting up and try not to take too hot a shower as I was told. Just grateful to be here.
Keep healing!
Had a CAT scan done yesterday I’ll get results on Monday they did detect fluid which could cause my equilibrium problem not sure what the next step is. Thanks for your reply.
I’d suggest the next step is to have the images interpreted by your treating neurologist or neurosurgeon. Someone who knows your medical history. The radiologist’s role is to take the images and write a report based on those images.
You state:
Within our skulls there needs to be a balance of blood, brain matter and fluid. The fluid surrounds or brain and cushions our brain from an external impact and assists in removing waste, so the fluid is essential. It’s the amount of fluid and where it is situated that can cause issues. When there is not enough fluid it is called intercranial hypotension, too much fluid intercranial hypertension (also known as hydrocephalus or ‘Water on the Brain’). Personally, I have experienced both hypo- and hyper-, and neither is nice.
Now, in saying all of this, I agree 1000%
MOST DEFINITELY. Some medicos may disagree, but it certainly has had an impact on me.
Your next move should be to obtain an appointment with your treating neuro dr.
so here are my test results can someone explain this it’s a 0.5 collection underneath the right frontotemporal craniotomy bone flap with small flecks of internal hyperdensity. This flecks are difficult to characterize due to their small size but are likely fat, less likely air. Overall,
this likely represents a postsurgical fluid collection. However, if there are signs of overlying infection and a subdural empyema may also be in the differential. If this is the case, consider MRI without and with contrast for further characterization.
so here are my test results can someone explain this waiting to hear from my doctor it’s a 0.5collection underneath the right frontotemporal craniotomy bone flap with small flecks of internal hyperdensity. This flecks are difficult to characterize due to their small size but are likely fat, less likely air. Overall,
this likely represents a postsurgical fluid collection. However, if there are signs of overlying infection and a subdural empyema may also be in the differential. If this is the case, consider MRI without and with contrast for further characterization.
Oh my gosh, Radiology reports can be quite confusing for those of us not trained in radiology or medicine! When I don’t know something, I reach out to my Neurosurgeon or her NP. But you’re already waiting for your surgeon to respond.
Hyperdensity as I understand it is a thickening of some type seen on the scan. I learned that because I’ve got a small pocket of blood that has never gone away, it always has the same word. It sounds as if the radiologist is asking the neurosurgeon to make sure there’s not an infection. I found this on “subdural empyema” Subdural empyema | Radiology Reference Article | Radiopaedia.org. (Radiopaedia is my go to source for radiology questions). I believe the radiologist is suggesting if there’s signs of infection to have an MRI done to get a better look. I’m going to guess that around 90% of all my images except for the angiograms suggested a different method of checking out what the radiologist believes they’re seeing. My last MRI/A suggested an angiogram if warranted by the Neurosurgeon on the risks. The risk is too high for me due to the last reaction so I won’t have another unless it’s to save my life.
After my MRI on September 6th I know I have a problem what’s a procedure after that I do not want to have another surgery.
I wrote down my dilemmas asking for help several times, everyone getting sick of me complaining, working my brain every day it hurts but I need the income, the nurse I was closest to got promoted and I have no contact I feel I have been dropped in the system it’s been 6 months I am getting tired of the pain, loss of friends and intimacy with my husband I feel so very tired and fed up my head is caving in my husband feels it it’s getting worse everyday and recessing I need any advice will help thank you.
I’d reach out to your surgeon about the caving in problem. Merl knows a lot more about craniotomy procedures than I do and so do any of our members that have had one, all my procedures have been endovascular ones. The other thing you may want to do is start your own topic and ask for help from members who have had craniotomies.
craniotomy what is it exactly I have an MRI scheduled September 6th my head is caving in I’m the right side can someone explain this any suggestions, comments appreciated.
We aren’t doctors so can only relate our own experience. I’m not sure what you are asking
The radiology report indicates someon has had a previous craniotomy and that either some fat or air bubbles has collected under the site and that the test should be repeated with and without contrast to determine which it is.
Who this report refers to has had a fairly recent craniotomy thus the confusion. If this is you how long ago did you have the surgery? The feeling of caving in is somewhat normal considering a portion of the skull has been removed and put back in.
It takes a lot longer for the skull to heal than say a broken arm because the skull has no blood supply as oposed to a bone that is making marrow.
Sometimes what isn’t said in a report is as significant as what is said. In the case of the report referred to here. We are only seeing a part of it, but it certainly doesn"t refer to anything emergent. The follow up study being weeks away would TEND confirm that.
A craniotomy is a procedure where a portion of the skull is removed by the surgeon to gain access to the brain. The skull portion is then put back in place, often secured with plates and screws.
I have to agree with TJ, this is something that only your surgeon or treating Dr can explain, taking your personal history into consideration. Recently, I had an MRI, the radiologist saw ‘nothing remarkable’, but the surgeon’s opinion was the exact opposite, recommending surgery. Like you ‘I do not want to have another surgery’, but the reality for me is that the surgeon wouldn’t have recommended it if it wasn’t necessary. From my experience, the medicos try the least invasive options first.
I also have to agree with TJ
Sometimes when the bone flap is replaced and it meshes itself to the skull it can seem sunken or caving. I felt the distortion of my skull post craniotomy was huge, but it was explained to me that the bone is there to protect the brain inside and that it takes time for everything to settle. Many years on I can still see it ‘sunken’, but my wife doesn’t see it as such. I think because I see my head in the mirror every day, the ‘huge’ change I could see wasn’t as bad as I thought, according to the medicos.
I looked it up and found this - “A subdural effusion is a collection of cerebrospinal fluid (CSF) trapped between the surface of the brain and the outer lining of the brain (the dura matter)” and this Spontaneous subdural fluid collection following aneurysmal subarachnoid hemorrhage: subdural hygroma or external hydrocephalus? - PubMed.
And this “A chronic subdural collection is liquid with an even lower haematocrit—that is, more water than blood, and is more correctly termed a subdural effusion . In most cases this is more than three weeks from the injury and is a failure of the acute haematoma to resolve.”