In the meantime I was in so much pain, I mean the type of pain you hear about when women are in labor with an almost 10 lb baby.. naturally (I know been there done that), but it is constant. My head felt like my brain was hitting the bones inside of my skull. It felt like it was empty like there was nothing to cushion my brain. I know it sounds weird I could feel that, but it was seriously the worst pain, and indescribable. It hurt to sit up, noise killed me, light, anything, and everything. What helped? Laying completely flat. I had to lay flat constantly. I still had a job, my husband, and 2 children, who mind you are a few years younger and have no clue why their mom, who to them is =Wonder Woman, can not move. It has happened, the thing I was holding on to, Family, I am thinking I am failing at that now. My boss did help me to get on short-term disability at this time, which was huge! That was a win, phew I could still contribute to my family, at least financially. I would still get the questions from my co-worker ... When are you coming back? What is this? What do you have? Why can't they fix this? I need time off. Seriously? I feel like I am dying, and you need time off! I felt like my life, life as I knew it was over. I did not know if I would ever get my life back. Would I be bedbound for the rest of my life? It was so hard to see the way my husband and children looked at me. They looked at me with such worry and pain. I was not used to this, as I am the one that has always been their glue remember? I did not know what to do with all of their emotions, or mine. This was probably one of the darkest times mentally that I have ever had. When a person is in that much pain and sees the pain they are causing their dearest and most loved ones, I think it causes a big mental storm to begin to brew. Mind you laying there 24/7, I had all the time in the world to contemplate my life or lack thereof at the moment. I wanted nothing more than to fall asleep and not be in pain any longer. 
(My baby boy Jackson, would love on me, but I could see the worry in his eyes. I think he was scared to hurt me. :( )
The day finally comes, my appointment at Duke! I will never forget that experience. My Dr., I will call him Dr. M, he was amazing! He had the kindest bedside manner, listened to everything I had to say, and just listened. He believed me, he cared. He said although some CSF leaks are difficult to find he would do his best. I did the chic-in and they rolled me into this scary - yet amazing room. It had machines everywhere, and nurses to assist Dr. M., and I knew this was the real deal. I may have a chance at getting life back. They do a technique called scouting to try to find the CSF leak, do a Lumbar Puncture, and put a tracer fluid through your vascular system to try to locate the leak. They are taking images with a special machine the entire time the tracer goes through your system, and they even use this machine to do an LP, they use small needles so as to not cause another leak. I mean the professionalism is amazing. I was blown away. Dr. M found my leaks! There were several small leaks up and down my spine. He believed they were caused by the previous Lumbar Puncture I had, and my having IIH and being in CSF high pressure. He decided to do blood patches on these areas. I felt immediate relief! How could I be in so much pain for so long and then just like that .. it was over! I was amazed! I could not grasp it! Was this real? This was one of the happiest moments of my life. I had hope! I may get my life back, I could be a mom again, a wife again! I cried so hard with excitement. My husband cried when they rolled me into recovery. I looked at him and touched my head, and said babe .. that did not hurt. He got overcome with emotion and wept. This man this hero of a man, that has been on 13 deployments, held my hand and we wept together.
(My handsome man! It is not often I get him in a selfie)
I recovered at home for a few days and eased back into life. It was so exciting to be upright again. My kids were ecstatic! They had their Mom back. I was not 100%, but they took what they could get at this point. I snuggled, played, laughed, and cooked. It was amazing. Life, just little moments, just amazing. My little family was whole again. I heard this saying, and try to live by it now, it goes something like, Do not take the little moments for granted because one day you may look back, and they will be the big moments.
It was not long until I realized something was wrong, and I was not able to be upright for as long as I should have. I was terrified. I prayed, please tell me this is not happening again. How could this be happening again? I had not had another procedure, or been rough with my body, I followed all of Dr. M's directions. I prayed harder than I had ever prayed before, then I contacted Duke. They said sometimes they miss a leak, it is a smaller leak, or the blood patches fail. They said they have another option which is a fibrin glue blood patch. I said please sign me up!! Again I would wait for this procedure for almost 2 months. This time was not as bad. The blood patches helped! I was able to be upright for short periods of time and had Duke's expertise now. They told me to push caffeine and a lot of it. They said this speeds up CSF production and would help. Energy drinks became my new BFF. They explained laying completely flat takes the pain away, and being upright causes the pain. Makes sense. I learned to time how long I could be up, and do what I could in that time period, so I could spend some time with my children and husband. I learned I could be up for a total of 3 hours before my head felt like it would explode. So I would do 2 1/2 hours up and rest for 3 hours, and so on. My new place of residence was our living room couch, so I could visit with my family. I had an ice pack, migraine hats, you name it I had it. I was becoming a pro at this. I was going to beat this. I had to. I knew with this team behind me I would be OK.
(My sweet Ellie, we all call her Nurse Ellie)
Finally, my appointment day comes! Dr. M is there! He does the procedure and finds the areas, he does a few extra fibrin glue patches just in case. Relief again! The song "Unstoppable "... you know the one by Sia plays in my head. I think if this works that is what I will be! Please lord, please work! Please let me have my life back!
To be continued...
**This Part is dedicated to my husband and sweet children. I hope they know how thankful I am to them, and their patience, love, and support, through all of my medical journey. They truly are my everything. I love them with everything that I am.
I would love to hear your thoughts, so make sure to comment below! Xo- Deanna
Glossary-
*CSF- Cerebral Spinal Fluid
*Lp- Lumbar Puncture
*-CSF Leak -A CSF leak is a condition that occurs when the CSF leaks through a defect in the dura or the skull and out through the nose or ear. A CSF leak results from a hole or tear in the dura, the outermost layer of the meninges. Causes of the hole or tear can include head injury and brain or sinus surgery.-Johns Hopkins University*Epidural Blood Patch- An epidural blood patch is a surgical procedure that uses autologous blood in order to close one or many holes in the dura mater of the spinal cord, usually as a result of a previous lumbar puncture or epidural. The procedure can be used to relieve orthostatic headaches, most commonly post dural puncture headache. Wikipedia
*How common is a CSF leak?- Spontaneous CSF leaks (ones that are not triggered by a medical procedure such as a lumbar puncture, or by a serious injury such as a gunshot wound) occur in at least five in 100,000 people per year, making them fairly rare.- Cedars-Sinai*Is a CSF leak serious? A CSF leak is a very serious condition, and patients who have tears in their dura with persistent CSF leaks need repair as soon as possible to reduce headache pain and the chance of meningitis.Johns Hopkins University*Fibrin Glue- Fibrin glue is a surgical formulation used to create a fibrin clot for hemostasis, cartilage repair surgeries or wound healing. It contains separately packaged human fibrinogen and human thrombin.- Wikipedia
*IIH- What is idiopathic intracranial hypertension? Idiopathic intracranial hypertension (IIH) happens when high pressure around the brain causes symptoms like vision changes and headaches. “Idiopathic” means the cause isn't known, “intracranial” means in the skull, and “hypertension” means high pressure.-nei.nih.gov
*IIH**Rare -Fewer than 200,000 US cases per year- Mayo Clinic
