My life, after 12.5 years of Migraine, my life went back to normal- no pain- after a rare diagnosis.
It has ben so long since I’ve written for you and I did not mean to leave you hanging. My blog posts are real and I am always sharing my vulnerabilities with you. Writing and reading has been very difficult for me all these years. In fact I am re-learning to write and read.
I have been trying to write in my blog, with this update, for weeks. BC I could not write I took a video but couldn’t post it.
I have some amazing news and I truly hope this applies to you.
Last summer, my migraine specialist of 12.5 years said she could no longer help me. I was getting much worse and was in the ED a bunch of times leading up to this. My migraine specialist refereed me to Barrows Neurological Institute, which is located in downtown Phoenix, AZ and is rated #1 in the world for neurology and back and spine treatments.
I was thrilled to have them assess me and my case.
June 8th was my first tele call with my new Barrows neurologist. She asked me me few simple questions…Where was I and what was I doing when the. Migraines came on. I told her that James and I were off-roading in his truck through the desert here in AZ. The migraine hit me within 20 minutes of the drive. We had 20 more minutes to get to our destination. By the time we got to our desired location I was screaming and vomitting. It scared me to death. I went home and took 2 pain pills that I had left over from a knee injury. I can say firmly that they did not even tough the migraine. I was in the ED the next morning. I shared this with Dr. Robblee (my neurologist and she said….I”I don’t think you have chronic migraines, I believe you have a spinal fluid leak. This means trauma induced this spinal leak condition and migraines are a side effect. I had never heard of a CSF leak (cerebral spinal leak) and she told me its a newer diagnose and not aware in the medical community. Many doctors, headache clinics and hospitals do not know about spinal leaks which leads to under-diagnosed migraine patients misdiagnosis. The good news folks- if you get the leak fixed- YOU CAN BE CURED OF MIGRAINES!!!
After my first call with Dr. Robble- she diagnosed me correctly within the first 10 minutes of our call. AS you can imagine- the possibility of being free of these migraines and medication side effect, I was thirilled!
July 13th, 2020 I had the procedure to fix my spinal leak. They do what’s called an epidural blood patch. They take a lot of blood from your arm and by using a big needle they take that blood and insert it my spine. I was on the table in OR, awake and within seconds of the blood gong up my spine and with in seconds all of my pain WAS GONE! Holy toledo! I laughed, cried, screamed and yelled that I was pain free! The surgical team all clapped their hands and we’re so happy the procedure worked. Folks..I was pain free for 4 months!
During that time I went through medication withdrawals. I had started to drop dosages on my my migraine meds bc I didn’t need them any longer. I am telling you I felt so FREE to live my life again and to get back to normal! The blood patch worked and I was cured!
In January of this year, I started having daily headaches. They got worse over the next few weeks and the pain turned into a non-stop migraine. I spoke with my neurologist about this and she believes that I have a small leak in my blood patch and that I should have another patch done. Now- pls know there is a 3 month recovery with this. Others who have had the blood patch done, only have a week or a month recovery.
I went in to St. Jospehs hospital, which houses Barrows Neurological Inst. and had my second blood patch, this past Friday. It is very common for those who have blood patch, to have a few patch to cure long term. The most patches a person has had was 6. I am hoping this is my last one.
That day, my medical team determined I need a test done called a Meylogram CT….has anyone else have this test? They started with a lumbar function and removed fluid for testing. Then they put contrast in my spine. Next up was a CT so they had to ensure the contrast was all up and down in my spine. For the Meylogram, I was strapped to a table as they moved me up and down and side to side, to spread it. My surgeon said, when they put me upside down, to get the contrast into my brain, it would be very uncomfortable and could cause a migraine. Great. It hurt so bad when they put me upside down that I blacked out. They did the CT and found no leak (the Meylogram tests measures pressure in the brain) and can show the exact location of the leak so they could target shoot it. Many leaks do not show up on imaging…even the best imagine available. Doctors usually go by a patients symptoms, which are specific leak symptom.
I am doing much better today after sleeping 72 hours. I know this headache I have now is from the contrast dye and the tipping me upside down. I want to get my life back…like we all do. DON”T GIVE UP.! We are some of the strongest people out there. WE shall OVERCOME!
CSF Leak symptoms…
If you had trauma and your migraines began than or they began at a later date…you could have a spinal leak.
If you feel drainage in your throat or nose…you could have a spinal leak.
If you have an “Upright or Positional migraine ….you could have a spinal leak.
An upright or positional migraine is where your pain gets worse as the day progress and hurts more when walking, standing or sitting and feel a lot better laying down.
This is a life-changer. They say that 5 ppl out of 100,000 migraine suffers have a leak that could be fixed and get their life back…I believe that number is too low. I am confident that there are many more ppl who have this leak. As I mentioned before this is a new diagnosis and not well known to the medical community. I had to go to the best hospital in the world to get diagnosed with a leak. My life mission is to bring more awareness to spinal leaks. I am writing a book, creating web-sites and will create a non-profit to help migraine sufferers with essentials and finding health care.
There is so much I want to tell share with you but will have to do so in other posts.
A CSF leak (spinal leak) can be fixed! It is a miracle diagnosis an is giving suffers their lives back- without migraine pain!
Thank you for continuing to follow me. I want to hear from you…we all need support. I feel very sad and lonely. Do you have the symptoms of a leak? If you see a neurologist for this make sure they know something about spinal leaks or even that their willing to learn will be the way to go for you. If you see a doctor who does not know about the CSF leak diagnosis and symptoms will mis-diagnosis you, if you have a leak.
I am praying for all of us! It feels good to talk to you all (well communicate in writing).
Has anyone else had a Meylogram CT or a blood patch? I want to talk with people who understand me….like you.
I love you all.
Thank you for being there for me
I am always here for you.
I will never stop fighting for more research to be done to help all of us find answers.
Bye for now,:)