My Medical Journey- Part 4 "The Stent Surgery" By Deanna Caroon

Written by Deanna Caroon Posted on 06 Sep. 2023

My Medical Journey- Part 4 "The Stent Surgery" By Deanna Caroon

Hi Ya'll! It has been quite some time since I last wrote. I left off with an appointment with Dr. F discussing my option to have stents placed in my brain. I would need testing done before having stent placement, which was horrible. My first procedure was a lumbar puncture, which was my 23rd time having this procedure done. I have had multiple Lumbar punctures for diagnostic testing to relieve pressure from my brain, and to assist in doing fibrin glue patches. If you have never had a lumbar puncture done, let me tell you, this is not a fun procedure to have performed. "For this procedure, your healthcare provider inserts a hollow needle into the space surrounding the spinal column (subarachnoid space) in the lower back to withdraw some cerebrospinal fluid (CSF) or inject medicine."John Hopkins Medicine: This is no regular needle friends!! It must be long to go through to the spine, and it hurts!

(Example of a Lumbar Puncture)

So, we got the 1st procedure on the books, and I had the LP done like a pro! I mean, I have had a few done before! Unfortunately, the person doing my procedure was young and hit a nerve, and did not use the special needle Dr. F suggested, so I got yet another CFS leak from this procedure. Back to Duke, I go for a blood patch. In the meantime, I had to rest, ingest large amounts of caffeine

and lay flat; I knew the drill for a leak by now. I got in much quicker this time as I was an established patient in the Duke system.

I scheduled my next appointment, which would be an angiogram." An angiogram is a type of X-ray used to examine blood vessels. Blood vessels don't show up clearly on ordinary X-rays, so a special dye is injected into the area being examined. The dye highlights the blood vessels as it moves through them. The medical name for this is a catheter angiogram."NHS Inform.

An angiogram was of my brain, so it began in my groin area. Dr. F. took a catheter and worked his way from my groin to my brain, and I was terrified! My brilliant Neurosurgeon spoke to me the entire time. He told me exactly what I would feel, what he would be doing, and what place he would examine next. As the procedure went on, I began to ease into it, and he calmed my nerves; his expertise and kind voice made me feel as though 'I was safe and everything would be okay. I was lying there with a neurosurgeon poking around in my brain and conversing with him by the end of the procedure. He was able to find the areas of stenosis and figure out where I needed the stents placed. My left transverse sinus and jugular bulb were severely stenosed and would require two stents in my brain

(This is an image of my brain and the stenosis in the Transverse sinus area)

I went to recovery, and Dr. F came to speak to my husband and I. That is when he explained everything to us. He also mentioned how I had previously gotten a leak from the LP. He said he had been thinking of my body shape and medical history and suspected that I had Ehlers-Danlos syndrome. I told him he was not the first to say this. I had a primary care physician who thought the same due to the spontaneous CSF leaking and other findings. He went on to say due to my having IIH and not fitting the norms, along with all of my other symptoms, I had all of the signs of Ehlers-Danlos Syndrome. He asked about my youth and said I should look into genetic testing, but he did diagnose me with it by clinical findings. We went on to book my stent surgery. He discussed how my future may look having these conditions. He explained that having IIH and Ehlers-Danlos syndrome is complex as I may get additional areas of stenosis later down the road due to my vessels' fragile elasticity. He also explained how shunting may never be an excellent option for me now as it tends to fail in those with Ehlers-Danlos Syndrome and usually requires many revisions. This news was a lot for us to digest! I asked that Dr. F. be frank with us and appreciated his honesty. It allows me to plan to know how to live my life. Knowing that I must enjoy my good moments has opened my eyes and given me clarity.
We left with a surgery date on the books and a lot of research to do on our part about what life might look like now.

(My husband Kevin and I before I went in for my stent surgery)

I was nervous, scared, excited, and full of hope on the day of my stent surgery! I had researched, called, and fought hard to find the perfect Neurosurgeon; honestly, I never thought this day would come! I had a chance of actually feeling better. I had put a lot of weight on this procedure as my quality of life had been horrible. If I could return just a fraction of my previous life, I would be happy! I prayed again: Please, lord, give my surgeon steady hands, provide him vision during this operation, and let him help me. I kissed my husband, Kevin, and returned to the same room where the angiogram was done; this is Dr. F's Operating Suite. I felt reassured; had been here before and was comfortable there, but my body still trembled. There were quite a few people in the suite, one being an anesthesiologist; she was from Italy. She was amazing! We spoke of Italy, my time there, my children being born there, and her missing home; she eased my nerves, and my body stopped trembling from fear. I began counting backwards from 10, 9, 8, and was asleep.

(This is an example of a stent used for brain stent surgery)

I woke up violently shaking! I was freezing and under a heating lamp. I could not warm up; I was in the ICU. Nurses surrounded me, adding blankets on top of me, trying to warm me. Finally, the shaking stopped, and my body temperature began to rise. My teeth stopped chattering, and I knew where I was, that I was alive, that I was okay. I had made it through surgery, was the proud owner of two new stents, and hopefully, a new, more functional life! I would stay in the ICU for a few more hours and then meet my husband in my regular hospital room. This was the first time I saw that look of worry on his face that I have now become accustomed to. He was scared; he was terrified. He hugged me ever so gently and asked if I was okay. I assured him it was still me and I was okay. I am not sure what he thought, but the look on his face made me think he was thinking I may not be me or be okay after this surgery. I love this man and know he has been through it with me during this medical journey. I wish I could say there is an end in sight, but I can not. I can say this procedure made my head instantly feel less pressure. I could touch my head again and felt okay laying flat; it had been ages since I could do that comfortably unless I had a CSF leak.

(Example of a stent in the rt transverse sinus of the brain)

I would be Dr. F's first patient to only need a few hours of recovery and check out of the hospital on the same day as surgery. I did not want to stay in the hospital and wanted to sleep in my bed. He ensured I was not pushing it and only allowed this as my home was a few hours from the hospital. I promised to rest, as I felt I would receive more rest at home than at the hospital. I just wanted my kids to know I was safe and okay! I did not want them to think this was a major surgery! I wanted them to know Mama was going to be better! I wanted everyone to think I was okay! I reassured him I had a friend at home who was a nurse to help care for me. He agreed to let me go home. Looking back, I think I should have stayed at the hospital; I believe when people do not see your injuries or a wound, they do not realize how extensive a surgery or procedure is. I had a horrible time at home. My "friend," the nurse, was no help and ended up getting into a massive argument with me as I asked her to quiet down because she thought I was treating her like a child. I think as I played down my surgery to my children, she maybe thought it was not a major surgery either. In a hospital setting, this would have never happened. The nurses were kind and knew how to care for neurology patients. Who knows, maybe she was having a bad day or just wanted to laugh with my kids instead of doing what she said she was coming to do: take care of me. It is life, and sometimes people disappoint you. Our friendship never fully recovered. Do I miss her? Yes, but I believe that sometimes people are intended to be in our lives for particular seasons. Thats that.

(The healing has began- a few days post stent surgery)

After a few days, my head would begin to feel better. The pressure would start to regulate. Dr. F. explained I would have rebound headaches and fall into low pressure as if I had a CSF leak, and I did. It slowly began to regulate and feel better with each passing day! I was still on medication to lower CSF pressure. I would need to figure out my new medication routine post-surgery! The goal is to be on little to no IIH medicines, as they are horrendous medications with horrible side effects. It was time to start living again! Or so I thought...

-Make sure to leave a comment below. I would love to hear your feedback.
Xo - Deanna

Comments (2)

Deanna Caroon 29 Nov. 2023

@ Larissa Thank you so much! I apologize for taking so long between blog posts! I appreciate your patience! Xo- Deanna

Larissa 29 Nov. 2023

Thank you for sharing your story. I can not wait to hear what happens next.

Blogs you might like to read