MEDICAL UPDATE
This medical blog is mainly focused on the 24-7 facial pain I have had since Sept 19th 2019
other blogs have related to this - under Sinus pain / Trigeminal Neuralgia and countless visits to specialists in 2019 & 2020 and not the Hashimotos, Insulin Resistance, Spinal Fusion that's mostly covered in Ugh, Medical {altho I have a fhunch this is now linked to what I am going through now }
First diagnosis - SINUS and 2 nose operations required
Second Diagnosis - Atypical Bilateral Trigeminal Neuralgia
and more on in various blogs
(anything typed in blue , click and it will give you more information)
FYI - I have not been able to sleep horizontal since September 2019. The pressure and pain is unbearable. So I have to sleep sitting up , I can manage 3-4hrs as the face pain wakes me
Anything on my face causes additional pain - glasses, the dreaded mask is about 5 minutes before the extreme pain kicks in.
Ok - here's what's going on now
After countless visits with numerous Neurologists & Neurosurgeons, it was time to reach out to the best of the best of the best, with honors
The Mayo Clinic
On 6th Jan we had a Zoom conference with a Mayo Clinic Neurologist, Dr Whealy, for an hour. That was a tad mind-blowing. He asked so many questions and listened to everything. His assessment of my Atypical Bilateral Trigeminal Neuralgia diagnosis is I do NOT have that condition. He studied the MRI's I had last year and even tho the Trigeminals are close to the Superior Cerebellar arteries, they are not hooked and not causing this 24-7 facial pain.
With my symptoms, condition and pain triggers - not being to sleep horizontal for 17 months, sneezing, constantly rubbing my face, nothing being able to touch my face - even water from a shower; he says it is probable that this is CerebroSpinal Fluid leaks (Where the dura pockets that carries the spinal fluid around the spinal column have tears, so leaking fluid into my blood and into my brain) So all the neurologists I have seen to date were wrong, lazy, keeping to the first diagnosis, not investigating further, especially when giving me the SPG blocks and the drastic result from that - passing me on to the next and striking me off their lists.
On Friday 15th Jan I will have 3 of 5 MRI's - 1 & 2 - full brain with and without contrast and then the clavical section of my spine and on Monday 18th I will have 4 & 5 on thorax and lumbar. These will be done in Laramie and everything else will be done in Minnesota at the Mayo Clinic.
If the MRI results show it then the treatment for CSF is Epidural Blood Patch
So that's this year's new thing - I have a new thing added to the list and to conquer every year since giving up smoking in Sept 2011
The MRI scans written report -
Update : 20th Jan - I've had all the MRI's - there were 5 altogether. (Brain with and without contrast / Clavical / Thorax and Lumbar ) All results came in an hour after the scans . The last two were the most painful, laying completeley flat , causing fusion, scar and sciatica to scream all the way thru, then inbetween i was allowed to sit up and stretch for facial relief and spine could relax. Altho the techs did have to assist in moving me as my spine locked both times ! What a mess !
Now its wait for the Neurologist and Mayo Clinic to receive the disc with all the imaging , he has the written reports already )
Further investigation to find the CerebroSpinal Fluid leak /tear is now needed
Dr Whealy "MRI head and spine without specific evidence of CSF leak. Cisternogram and return visit with me ordered. If there is no evidence of CSF leak on this scan, I would next suggest a cisternogram. If there is evidence of CSF leak on the scan I would next suggest an empiric bilevel blood patch."
Update 25th January - just got the appointments done with the scheduler at Mayo Clinic
first week in March - So its off to Rochester, Minnesota
2nd Tuesday - 3pm blood draw - no fasting
3rd Wednesday - Cisternogram at 7.45am - then various CT scans throughout the day
4th Thursday - 24hr scan at 8am - 1.15 Dr Whealy midway consult for findings so far
5th -Friday - final 48hr scan 8am- may not happen depending on the consult with Dr Whealy
this doesn't include the blood patch appointment, as that depends on the results and consult on the Thursday. So I will NOT be fixed on this trip as it currently stands
Francis will be staying on the ranch for this week to look after my puppies and horses , so glad he lives close by and isn't currently working
Update 10th March
Well its all over with and after a week of tests, needles, lumar puncture, Cisternogram and scans . I do NOT have a tear and CSF. have Idiopathic New persistent daily migraine" .. based on the face . My brain nerve pain sensors have become over sensitive now and are constantly firing . So I am now on a new migraine medication , small dose daily to increase weekly . So 18 months of 3 misdiagnosis' it's all over not much else to report from the trip - not very exciting as it was back and forth from various hospitals - Rochester is a medium sized city and all based around and for the Mayo
Got some pics as t was impressive - just like the medical bills.. as now we fight the med ins company!
I am awaiting the disc of all the images from the Cisternogram and the scans - I'll add those when I get them
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