THE HOLE IN MY HEAD AND HOW FIXING IT FIXED ME -HOPE FOR OTHERS?

If anyone has a shunt and it’s not working, you might want to read this.  I don’t know if applies to anyone else or not, but it’s been nothing short of a miracle for me.

 

This is an extremely condensed version of an extremely long story relating to my personal struggle with intracranial pressure disorders.  I’ve been waiting to see if this is really as good as it seems and now feel like I need to share it with everyone in the event it helps somebody else.  I originally addressed this a year ago in a post entitled “Juice Boxes and My Brain” in the original version of ShuntWhisperer because of the way juice leaks around the straws in juice boxes and pouches when they are squeezed.  I’ve now been treated with great improvement to my condition, and here is the synopsis:

I received my first shunt in March 2017.  For the first few weeks it seemed like an answer to prayers, quite literally.   However, after about 2 weeks, symptoms began to return, although a little different than before.

Turning up the adjustable shunt helped, but within 2 weeks, I was back in the same condition.  This process, including one hospitalization for extreme lethargy, repeated over the ensuing 4 months until the shunt was at its maximum setting and I was struggling.  My symptoms were:

  1. Extreme sensitivity to changes in barometric pressure/elevation.   Changes of as little as 10 millibar (mb) affected me depending on whether the change was up or down, and larger changes, such as those associated with a storm, left me bedridden.
  2. Intolerance to heat
  3. Extreme fatigue
  4. Poor sleep
  5. 3-4 hours every morning to get to the point of being able to “function”.  I lived with a coffee cup in my hand.
  6. Instead of pressure inside my head, I had a “hollow” feeling
  7. Swelling along the shunt catheter under my scalp from point where it was inserted into my skull on days when my ICP was “higher”; barely visibly noticeable, but I could feel the difference.  Least noticeable in the morning, more noticeable as the day went on, especially if I was trying to do something physical.
  8. Change in the shape of the indentation over the surgical access in my skull, in the same manner as the swelling along the shunt.
  9. Aggravation of these symptoms after eating more than a small amount of food.

Here are pictures of my shunt in “normal” and swollen condition; these were taken well past the time my skull should have healed:

“Normal” appearance of shunt

flat shunt

Swollen appearance of shunt:

Distended shunt

Capture from MRI 16 months postop showing persistent lack of healing of the bone and pathway (marked in red) for CSF leakage:

Unhealed Craniotomy

Through this all, a series of events unfolded which prevented me from having any definitive treatment, including the death of my wife Trina.  While treatment options were falling back into place, these symptoms temporarily stabilized in early 2018, then reverted to high ICP symptoms in June when summer heat came.

About that time I noticed that the swelling along the shunt catheter had nearly stopped, and that made me aware of a possible likely explanation for my symptoms.  It turns out that my profession allowed me to recognize the clues right in front of me.  Before  IIH forced me into retirement, I had been a dentist.  I was very involved in treating patients with dental implants, especially the surgical aspect.  Implants require very precise placement to be successful, but often changes or shrinkage in bone after loss of a tooth makes placement impossible without first modifying/grafting of the bone in the area to be implanted.  As such, I had developed the knowledge of how bone grows, or in my case, failed to grow to be able to recognize what might be responsible for my unstable outcome.   I realized that the hole in my skull had failed to heal to the degree necessary to prevent unwanted leakage of CSF along the slick silicone catheter and under my scalp.  This caused unwanted leakage of CSF as well as interfered with intended ICP management by my shunt.  As months went by, there was some healing, enough to plug the leak to the point where, with my shunt set to maximum, my ICP was too high, especially when summer heat set in and my ICP went up even farther.  Adjusting the shunt downward in pressure helped with the excessive ICP, but I still fought stability issues.  Finally, my neurosurgeon and I decided to try to repair the surgical hole in my skull, a relatively easy procedure.  This was done in March of 2019. 

The condition I was coping with is known as peri-tubal leakage.  Shunt catheters are slick silicone; tissue heals around them, but not to them.  It is possible for CSF to find its way between the tissue and the outside of the catheter out of the cranium and under the scalp, where it follow the shunt components until absorbed by the body.  It wreaks havock on ICP and CSF dynamics.  Information on this condition is sparse, to say the least.  I could only find one article referenced below; the pictures in the article are of pediatric patients; the leakage shown thus appears much more dramatic.  

From International Archives of Integrated Medicine: this article covers more than one potential complication of shunt placement, but the swelling of the shunt catheters under the scalp is what this Whisper is concerned with:

https://iaimjournal.com/wp-content/uploads/2015/09/iaim_2015_0209_12.pdf

This reference pertains to lumbar-periotoneal shunts:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4533463/

From the moment I remember coming out of anesthesia, I could feel a positive change.  The next six weeks were a little unstable as the surgery healed, but still much better than I had experienced since the first shunt surgery.  Now, 3 months later, I have the best stability I”ve had since the onset of my first IIH symptoms, and after some minor tweaks to the shunt setting, I feel as close to “normal” as I have in 3 years.  I still have lingering issues, but compared to the condition I was in before, I can live with them.   Furthermore, I feel a little better every day.  Previous triggers like heat, changes in barometric pressure either no longer bother me or their effects are greatly reduced, just by sealing this small opening in my skull under my scalp.

I can’t say if this affects anyone else.  It did affect me, and repairing the initial surgical access in my skull has made an enormous improvement, and I am sincerely grateful to Dr. Kenneth Liu and Penn State/Hershey Neurological Services for their efforts.  For the first time in 3+ years,  I feel like I have some quality of life, an I thank God for this answer to my prayers.  If this helps anyone, don’t thank me, thank God and your neurosurgeon.  I’m just a grateful messenger.

The Shunt Whisperer

May 28, 2019

Happy Birthday, Sweetheart

 

3 thoughts on “THE HOLE IN MY HEAD AND HOW FIXING IT FIXED ME -HOPE FOR OTHERS?

  1. Hi… I’m wondering if I’m suffering from IIH. Seeing my ENT this week in hopes he can refer me to a neurologist/neuro opthalmologist. I tried to see if I could see Dr. Kenneth Lui bout had been told he no longer practices in Hershey. Is that who you still see? Thanks for your help and sharing your story. – Jamie

    1. Jamie: that’s very peculiar. As far as I know and can find, Dr. Liu is still at Penn State/Hershey Neurological Services. The main switchboard number is 1 (717) 531-3828. I will call in the morning to see if he still practices there, and if not, where he has moved to (I hope it’s close). I’d follow him nearly anywhere for care, hopefully you can as well. God Bless.

    2. Jamie. I’ve had a hard month since your post, so apologies for not answering sooner.

      It has come to my attention that Dr. Liu has tendered his resignation from Hershey/Penn State. He replied to an email I sent to him; he indicated some very difficult personal reasons involving a sudden and very serious illness within his family which prompted him to leave so abruptly in late March, only two or so weeks after he revised my shunt. I agree with his decision and admire him for having made it. I urge those so inclined to pray for him; I don’t feel it appropriate to share the details without his permission.

      Dr. Lii’s departure has left an enormous hole in options for IIH patients. I don’t have any particular doctor I could recommend; I’d be inclined to inquire at Hershey/Penn State for another neurosurgeon. I have been to 4 major hospitals seeking care, and found the culture and approach at Hershey to the very best on terms of the staff’s kindness and general understanding of IIH patients. I can only pray there is another surgeon or resident who is as kind and willing to help as Dr. Liu. I have been to other facilities in Minnesota, North Carolina, and Virginia that literally left me worse off than when I arrived at them.

      I wish you the best. Please feel free to contact me after your consult; I can at least share my experience and possibly help you avoid what appear to be common pitfalls in IIH treatment that are merely the result of good doctors making choices that seem appropriate at the time, but which later prove to be problematic. Diagnosis and treatment of IIH has no widely accepted guidelines, leading to less than optimal management and treatment outcomes.

      Adding you to my prayer list; FWIW, I have come to rely on God and prayer more than one particular surgeon here or there. As flawed human beings, we will fail each other eventually; faith in Christ and prayer have saved me from bad choices and worse outcomes on four separate occasions.

      Praying for comfort and healing for all,
      Missing Trina every moment,
      Wes
      The Shuntwhisperer

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