Craniotomy, Hospital Stay and Recovery

Wise words from my neurosurgeon:

 

“I believe that professionalism is the inspiring of passion, creativity and service. When I enter an operating room I am immediately struck by the very profound experience of the relationship between doctor and patient. A person who trusts you with their life, their person, their speech, their memory, this is something much more than a delivery of a pill or a medication. It’s a very personal relationship that goes far beyond science. To me the OR is a work of art with a choreography and an emotion all its own. And I believe that the art part of our profession is our creativity. The passion is the driving force or energy. It was Osler who said that the profession of medicine is an art not a trade. The reality of that art part of what we do becomes clear when you understand without creativity, new methods, new techniques, we are hopelessly lost against the diseases we treat. We must change what we do; we must improve, to do that we must use our creativity.”  

~ Robert Dempsey, MD - Art, Passion and Neurosurgery

Craniotomy

We arrived in Madison, Wisconsin the night before my surgery, one month ago today, and I had a nice Korean dinner with my oldest son who lives in Madison and my daughter who took a bus down from St. Paul to be with me. I gave them gifts and love notes and we laughed and talked about happy times. It did my heart so much good to see them! My younger son called me that night from Galena to tell me he was concerned about me and hoped my surgery went well. These loving gestures were the greatest gifts I will ever receive from my children! Craniotomy, even under the best circumstances, is a serious matter. I had just spent the past few days filling out paperwork for a living will and powers of attorney for health and financial concerns, just in case. To know my children love and care about me relieved a great stress I had felt for two years and I went to sleep smiling and ready for the worst outcome, but expecting and hoping for only the best!

My surgery was performed from 7:30 am to 1:00 pm Friday February 8^, 2013 at the University of Wisconsin Hospital by Robert Dempsey, MD.  My vital signs were all good during the surgical prep , in fact I was so relaxed I almost fell asleep! My blood pressure was practically too low - a defense mechanism for stress perhaps? The anesthesia and surgical crew were all young, gorgeous, empathetic, talented and bright with impeccable bedside manner. I kept thinking, “Am I on the set of ER or what?!”  

As I was wheeled into the operating room I exclaimed, “Fired up! Ready to go!” The nurses all laughed and cheered me on. 

 Video: Robert Dempsey, MD speaks about Art, Passion and Neurosurgery, 35 minutes

It is amazing that nearly a month post op I found the Youtube video posted above while writing this blog. In the video, Dempsey speaks of the OR as a carefully choreographed work of art. My dear friend and caregiver Peter Fraterdeus said, “This video deserves to go viral; his talk touches on everything that is important in life...Really!”

The entire experience with Doctor Dempsey and the surgical staff at UW had a profound aura of sacrament – the body and human spirit were respected as sacred. I "went to sleep" peacefully in the OR after I was allowed to have time to ask every question I needed to calm my fears. Once I was asleep, I was positioned on my stomach for the 4 1/2 hour surgery. Before I knew it, I was being wheeled out of the OR to recovery, feeling nauseated but otherwise not too bad! I don’t recall much from the recovery room except I was doing far better than some of the other patients and my heart went out to them in their pain. 

All Night Party in the ICU with RN Joe Cougar

Friday February 8^, post-op – Once in the ICU I was surrounded by the relieved faces of Peter and my daughter and my oldest son – such a wonderful feeling! My family in Chicago were waiting with my Mom so I was able to speak with them on the phone. I even sent text messages to some of my friends! 

What a cool contact, my ICU nurse “RN Joe Cougar” is a former cop, now he and his wife of 30 years are opening a hippie coffee shop outside of Madison, Wisconsin, where right brain expansion is the ultimate goal! I must get there once it’s opened! 

RN Joe checked my vital signs every hour throughout the night and asked me each time to do the standard tests for neurological damage. Once the anesthesia wore off I noticed that I had numbness and tingly sensations on my left side, shoulder, arm, hip, leg, foot and toes. I had some spasms too, especially in the toes, and the left side was quite weak. It was hard to use utensils with the left hand and the IV and arterial lines were in my right hand and uncomfortable. Other than that I felt alert, clear headed and relieved! I was still on steroids and pain killers and the anti-seizure medication Keppra. Seizures can sometimes be worse after brain surgery than before so levels are carefully monitored. 

I ate dinner less than 12 hours after craniotomy: cranberry-apple juice, wild rice blend, bland baked tilapia, even vanilla ice cream! Joe warned me to eat sparingly but everything tasted so good! “American Pickers” was on the History Channel on the tube. The star of the show once visited our family cafe in Galena and mutual friends had introduced me to him. That was a funny coincidence for my night in the ICU – I had never seen the show before because I don’t own a TV! I did not get much sleep with the hourly neuro checks and the fidgety feeling from steroids.

 "Allie Anne" - Some Bunny Loves Me! From Thomas and Elizabeth
 

I had physical therapy two times in the hospital. My left leg was dragging and at first it was difficult for me to walk or stand for more than a couple of minutes. I was only able to do stairs one foot at a time at first until my strength came back. This showed me exactly where the right sided tumor had been causing damage to my brain and the blood vessels related to my left side. The therapist was somewhat concerned that I would need some follow up therapy if the leg remained weak a month post-op. 

Many with "benign" meningiomas do not fare so well. Dr. Dempsey informed me that if mine had been found even just a little later down the line, the outcome would have been far worse. He told me that he had a difficult job saving a couple of large and vital veins as it was, but his hand is steady and eyes keen. He also had to use a microscopic technique to clean and save the important sagittal sinus – and he thought he had gotten most all of the tumor cells. He was able to use my own tissue and not a synthetic to replace the meninges – the brain covering that was damaged by the tumor. The doctor also had to work at saving the smaller veins in the brain beneath the tumor, I was in very good hands! RN Joe told me not only would I have become progressively worse without the surgery, I would have eventually died from the tumor if it had not been found. I wish I had known of the growth earlier - there had been subtle signs for years that I had ignored or belittled.

There was a code red incident that night in the next ICU room, and I said prayers for the patient and the concerned and competent hospital staff. I once more felt so fortunate that my case went well, but my heart went out to my struggling neighbor that night and later someone else was getting bad news about their outcome. I have utmost respect for doctors and nurses after my night in ICU!

 All Night Party on the Neurology Wing

 

Worst breakfast ever! Yay!

Saturday I was moved to a regular room in the neurology wing. This gave me a taste of what dedicated nurses face with patience and compassion each day. Some of the neurology patients cannot control their emotions or actions and I heard first hand some of the trials these nurses face, all handled calmly and well. Unfortunately I did not sleep well my second night in the hospital either – but I could tell once more that I was one of the most fortunate patients on the floor!

My post tumor resection MRI was not too much fun in a turban. Quite uncomfortable really and I was glad when the test was over, but results were good! It seems like the entire tumor was removed - good news! My left leg is numb but working well enough, head and eyes are clear as a bell! Thank you, thank you to everyone and especially Dr. Dempsey and all at UW Hospital! 

Home a Day Early ~ Great Outcome!

Alice in Stitches - heading home! photo by Peter Fraterdeus

Sunday morning, February 10, the neurosurgery resident came in to cut and remove my tight bandage “turbin.” My incision was probably about 8 inches ear to ear, and about 20 or so stitches. Peter said it looked kind of like I was wearing a carmine colored rope headband, but a bit further back. The stitches are pretty tight - like a long thick snake across my head. At least the doc left most of my titanium locks along with the titanium screws and just trimmed back the hair instead of shaving my head! I was able to shampoo my hair too. There is some swelling but surprisingly very little pain and no headaches! 

Dr. Dempsey came in before noon to check on me and said I was doing so well I could go home a day early. I am healing in every way and so filled with gratitude!

Heading home after the tight bandage is removed from my head! 

Otter sketch by my artist daughter Teagan White.

 Video: “The Healing Has Begun” Van Morrison Live, 1986

 Kate Friedman, posthumous portrait by Alice McMahon, February 2012 Charcoal on Mylar film

I was released from the hospital one year to the day since we said goodbye to our beautiful talented friend and sister, artist Kate. Be sure to view Kate's series Gray Matter. Shine on forever, sweet love!

 

Recovery

On Dr. Dempsey’s advice I will be off of work for one more month, that is 2 months post op, because I still tire very easily and do not yet have the stamina to work a full day. I have occasional weakness and numbness on the left side, especially my left leg, but the strength is back enough to walk and do stairs well, so thankfully I will not need further therapy. I had a difficult time weaning from steroids but that is all behind me now. Last Monday I had a partial seizure and my entire left side went numb for a few moments – head to toe. The doctor increased the dosage for the anti-seizure medication and recommended I take a single aspirin per day to help thin the blood while healing continues to the blood vessels that had been compressed by the tumor. I hope I will be able to wean from Keppra 3 months post-op, and I may not be able to drive for a few months.

"Zipper head" one week post-op - some goths would pay big bucks for this 'do! 

photo: Peter Fraterdeus

3 days post-op I heard the most excellent news that the meningioma was benign! I am still uncertain about how my future may look as I heal. I will be monitored for regrowth for years to come and yearly MRIs will be needed for the rest of my life. I feel I am just beginning to experience the post traumatic stress that most survivors of brain surgery often describe. I am confident and hopeful that mine will be one of the best case scenarios. However, I am moved to tears daily reading of my new friend's struggles with meningiomas - "benign" brain tumors: their fears while on "watch and wait," photos of their scars and swollen faces post-op, a caregiver grieving the loss of her mother after repeated regrowth and treatments, their financial trials because of insurance issues. I am so fortunate that things went well for me - that my tumor was found before more serious permanent damage happened. I am amazed at the miracles of modern medical science. Benign tumors can wreak havoc if they grow to the point of brain injury and surgery. More research is sorely needed on brain tumors!

Warning Signs I Ignored

 FYI – these are extremely sight specific to my tumor size and location, but any ongoing or progressive symptoms you may have – write them down! Go over them with a doctor! Insist on testing if these symptoms are progressive! I hope you will research meningiomas and partial seizure symptoms and keep a document of your own symptoms of aging, hearing or visual changes, falls, one-sided weakness, spasms or other progressive symptoms.

1  Slight urinary incontinence – I thought this was menopause related. I now believe this was from tumor pressure because the problem was pronounced immediately post surgery – but now I feel better that I have been in years!

2       Tripping – missing steps, falling off of ladders, balance issues while dancing, some days stronger or weaker than others. I also KNOW this was from tumor pressure because once the resection was complete my entire left side was numb and tingly and weak. At least 5 years ago I fell and chipped a front tooth – clumsiness was never a problem for me before then and it became gradual progressive left-sided insecurity.

3    Left side visual deficits which I noticed with certainty only after the tumor was diagnosed. Before diagnosis I kept thinking I needed a visual exam or was simply aging! I will have an eye exam once my I have healed and my vision stabilizes.

4    Cramps and pain in left leg when sitting on planes and in cars. Pre-surgery I often felt very uncomfortable in close spaces and would take off my left shoe or cross my legs trying to get comfortable.

5    These may or may not be from the tumor but I wonder: depression, anxiety, difficulty completing complicated tasks, difficulty verbalizing words. These symptoms seemed to come and go.

6    Seizure symptoms – “spacing out” usually just for a moment. Left arm spasms, I had attributed to stress, in hindsight I realize these were definitely seizure or tumor-pressure symptoms. These were often followed by extreme fatigue for a day or so.

7    My left leg was often "dead" asleep as if there was poor circulation. Last month, my arm was also “dead” in the night. The pain often stayed in the effected limb a full day after an episode such as this.

 Three weeks post-op, at Rodity's in Greek Town, Chicago! All's well that ends well! Cheers!

Thanks to each and every one of you for holding my hand through it all! The love, support, caring letters and sharing of your own stories and trials have been a gift to me at this time. The financial support is such an ease to my troubled mind. Living month to month with no credit and no savings of any kind, out of pocket expenses alone could have forced me out of my apartment. I will be forever grateful to all who have reached out to help and I look forward to a time - hopefully in the near future – when I will once again be able to return the favor to someone else in need. My wish is that by sharing my story in this way, I might be able to help ease the mind of someone who has been recently diagnosed with a brain tumor.


There is still time to give to the Alice Recovery Fund and there will also be an art auction fundraiser in Galena, Illinois at Catherine Kouzmanoff's Miss Kitty's Grape Escape! I am so overwhelmed by the many artists and friends who have donated their artwork and other items to be auctioned for my benefit thanks to the kindness and hard work of Joe and Lydia at Pinder Pottery.

And now, I must get back to dancing at the drawing board!

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“Friendship is born at that moment when one person says to another: "What! You too? I thought I was the only one.” ~ C.S. Lewis

 

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