My Medical Journey

The Fibrin Glue Patch

Part 3

By Deanna Caroon

We Left off with my visit to Duke to receive a Fibrin Glue patch. Just to refresh your memory, I am super excited about the procedure as I have been bed bound or lying flat for quite some time. I see Dr. M and they bring me into this amazing room that may be scary to most, but to me, it was exciting. All I could think was could this be the day my life goes back to normal? As I explained they were overly cautious and did fibrin glue in several areas this time as the blood patch the last time did not work for me as anticipated. I felt so much pressure, and pain during the procedure, but I will tell you right now it was worth it. For the first time in a long time, I could touch my head. Almost instantly, my mind cleared, and I felt relief. My brain did not feel like it was sitting on my skull. I could breathe.

    I have to tell you something about me, I am the type of person that writes motivational quotes down and leaves them on my mirror to remind myself to be happy, it's sunshine and rainbows, you know. This process has made that difficult though. I paused and thought, is this real?  Am I really ok?

   I was wheeled into recovery, laid flat for an hour, and then released. That was that. They said to take it easy when you go home, no heavy lifting, we need this to work. I thought; I need this to work! I followed all directions to a T!

   (Resting With my sweet puppies after my procedure, Ellie Mae and Bella Grace. They both always stay by my side, especially if I have had a procedure, or am not feeling well.)

  It worked this time! I was in total disbelief. After being in this pain for so long I could not believe it was working, it was a miracle! This Dr, and his team, I hope they know they are giving people their lives back. I can’t even find the words to describe how excruciating the pain was. His bedside manner and that of his team were something I had not had up until then. There was not one other physician who understood what was going on, as this is so rare, so thank you, Dr. M., and Duke, for your help. I was scared I would not survive much longer. This was one of the scariest experiences of my medical journey.

    I was so happy, my family was thrilled, and we hoped life would return to normal soon! I even allowed myself a moment to dream of normal life and what that may be like again! Beach trips, family vacations, traveling to Texas, cooking with my husband, watching my son’s baseball games, and getting my nails done with my daughter. I even imagined getting off of LTD and going back to work. Yes, at this point they have transitioned me to LTD. That was eye-opening. I was scared, scared I would not be ok. Trust me they were not making it easy for me at the office still either. My boss: would make comments, but eventually, I think she understood my health was that bad, the other woman I worked with, just shook me, the things she said, were unforgivable. I understand it is a place of business, but life happens, and people get sick, sometimes there is no explanation. At this point, I am still trying to wrap my head around it. I would then have to try to relay this information to my office, LTD, it was a mess. How do I explain things that only a handful of world-renowned Doctors understand? I finally gave up trying as hard as it was and left it in God’s hands. it was too hard to make people get it.  I think people that should be in your life are, right? I was never the most religious person, but going through this, you learn to believe in something! I learned faith very quickly!

(This was a research study at Duke, for CSF leaks, right before having my fibrin Glue patch)

    The LTD is a whole other mess as it has been canceled, they do not believe I am ill enough to receive it. I am magically cured. Remember I am still having surgeries, and still need additional procedures, and this is an incurable condition. Oh insurance, they take our money until we need them. (My opinion.) They had a private physician review my case, and guess what, he disagreed with all my specialists, and said they are all wrong. This happened a couple of times, denied reinstated, this time no reinstatement. Every one of my amazing specialists was dumbfounded, wrote letters in my defense, as they were that flabbergasted, and it did not help. So that is where I am at with the Ltd. I must have faith everything happens for a reason, but I am struggling. I feel like I have burdened my family with my medical condition, taken my income away from them, and caused a financial burden on them with my medical bills.

                          (Another day another Doctor's appointment!)

(A moment up, and we went on a date to grab a bite to eat. I am sure you can tell my head was killing me)

   Enough of that! Back to my medical journey! My dreaming and good feelings were short-lived as my IIH – Pseudotumor- Cerebri returned. It returned with a vengeance too. I had never gotten it under control with medication, so I was thrown into super high pressure. I had an excess of fluid in my brain and spine now.  I just thought Why, why me? Why is this happening? I have lived my life, normally, and suddenly, my brain/spine fluid cannot be regulated. I started doing the blame game. Did I do something? Is it my fault? I went to the neuro-ophthalmologist again, and the neurologist. I did MRIs, and non-stop Doctor appts. My life was lived going to Dr. Appointments. My poor family, I just saw the look on their faces, they were scared and angry, as was I, we were all going through it. We did find out I had stenosis in a few areas of my brain.  I became a Google and Facebook doctor, and I did my research, I will tell you I have become a great researcher! I found two amazing Drs. My Neurologist did referrals to both. I figured whichever Doctor I got in with is the one I am meant to trust with my brain.

 (An MRI of the stenosis in my brain ) 

 Trusting a Doctor with your brain is a huge deal. I waited and waited, and finally, heard back from Dr. Kyle F’s office. He is a neurosurgeon in Winston-Salem. He is an amazing Surgeon with a published book and several journals on IIH in the medical journal. Dr. F and his PA Jen are a dream team if I have ever seen one!  I had to wait about 6 months to get in to see them, and it was worth the wait.

    My first appointment was with Jen, and she is spectacular. She immediately calmed my nerves. To know you have stenosis in your brain is scary. She talked me through IIh (Pseudotumor Cerebri), told me all about their clinic, and took my history. She had such a professional yet calming effect on me. It was one of those, you are in the right place, and you are going to be ok, kind of vibes. Knowing at this time there are 2 neurosurgeons that are knowledgeable about this, and I would personally trust them, they and I are the ones that fit me best. There was a higher power involved. Jennifer walked me through everything and set up my visit with Doctor F after confirming I was a good candidate for surgery.

                  (Bad head day! So I am snuggling my Smella  Bella!)

I believe I waited another month or so to see Dr. F. He walked into the room, introduced himself, and let my husband and I know he would do a little talking first, then let me explain my symptoms. I said that sounds great. I have told my story so many times, and remember, my words are jumbled, my brain is being squished, and I am on horrible medications that make me lose words, so I get nervous to speak. So, I jumped at that opportunity! Yes, please speak first, so you do not think I am a babbling idiot!! Dr. F says, let me begin by saying, I have viewed your MRI, and read over your chart, and you must be having horrible symptoms! I thought yes, yes!! I shook my head to agree! He then went on to say, you feel like your head is in a vice grip, or something to that context, blurry vision, it feels better sitting up…. I am shaking my head in disbelief. Yes, yes, yes. How in the world does he know exactly how I feel? Every symptom? I begin sobbing, like hysterically sobbing! Not one doctor has understood IIH, and he mossies’ into the room, and tells me every symptom I am having, like he is inside of my body, explaining it better than I could. He hands me a tissue, stays back, and says I am sorry I cannot do more, mind you this is during covid. He continues listing symptoms, then asks if he left anything out. I shake my head no. He continues to explain what can be done to help. Medications, which have failed me, surgical intervention, and so on. We. Agree I am an ideal candidate for the stent surgery, and I would require 2 stents in my transverse Sinus and jugular bulb area. He would need to do more testing first of course. So, we set up for an Angio- Gram, and Lumbar Puncture.

(Pictures can be deceiving! Other than getting dressed up for our photos… I was on the couch for the rest of this Holiday. On a positive note, I was with my family, and that is all that matters. They surrounded me with love and ordered dinner because they knew I could not cook as I use to. #Blessed It is the little things.)

To be Continued –

             I would love to hear your thoughts, so make sure to comment below! Xo- Deanna  

*All Events are recollections of how I perceived them to have happened. These events are not quoted as they are my memories of events.

*I have not used people's full names in my blog

*Definitions:

1-Pseudotumor Cerebri-(IIH)

Pseudotumor cerebri literally means "false brain tumor." It is likely due to high pressure within the skull caused by the buildup or poor absorption of cerebrospinal fluid (CSF). The disorder is most common in women between the ages of 20 and 50. Symptoms of pseudotumor cerebri, which include headache, nausea, vomiting, and pulsating sounds within the head, closely mimic symptoms of large brain tumors.

Prognosis- The disorder may cause progressive, permanent visual loss in some patients. In some cases, pseudotumor cerebri recurs.

(https://www.ninds.nih.gov/health-information/disorders/pseudotumor-cerebri)

2. Brain Stent-

Brain stents are small tubes that range in diameter from about soda straw size down to a piece of spaghetti. The stents are placed into brain arteries to keep the blood flow strong. Stents are tubes made of wire mesh that is capable of expansion. The mesh is made of nitinol, a blend of nickel and titanium

(https://www.medumich.edu)