Gert Tollesson, “saved my life and…my sanity!”

Gert Tollesson, “saved my life and…my sanity!”

Gert Tollesson, aka Dr “O”, is the 15th specialist I’ve consulted with regarding my Hydrocephalus. Most of you, who follow my blog, will know the uphill battle I’ve had to climb to finally get to him!

And, thank God I have!!!

Words I would use to describe him: Kind, Caring, Humble, Compassionate, Empath, Knowledgeable, Experienced, Passionate and Dedicated to helping his patients. Most of all, HUMAN!

I had a few questions ready for him as he entered the room, clearly coming from theatre:

  1. Are the early morning wake up headaches, my new norm or, something that should settle in time because of the bleed?
  2. What about the nausea and vomiting?
  3. When would you expect this to clear by i.e. the blood, headaches, nausea?

Short answer to all above: THE BLOOD IN MY CSF IS THE CAUSE OF IT ALL, UNTIL THAT CLEARS (about 4 weeks), I’LL FEEL THIS WAY. IT’LL WORK ITS WAY OUT, AS MY BRAIN PRODUCES MORE CSF, FOLLOWING THE REGULAR FLOW AND PATH.

The blood in my CSF is NOT due to a haemorrhage (I guess the nurse who told me that in ICU, got it wrong or I misunderstood).

Dr Tollesson explained my procedure: “When you go in with an endoscope, you can’t see where you’re going. Even though it’s a blunt instrument, sometimes, there are structures in the way which, if knicked, will lead to bleeding in the ventricles, which is what happened. We tried to get rid of as much as we could but, there’s no real way to stop it.” I know the stoma (ETV hole) was tiny so he enlarged it. I vaguely recall him showing me the photos he took during surgery. I’ll ask him about it in 4 weeks at my follow up consult and share it with you.

I told him; “I’m a bit nervous about what to expect next as I don’t know what the signs or symptoms are that I should be aware of. I feel this has been coming on for quite a few years but, all the other doctors, before you, brushed it aside and ignored me. So, I feel like I have nothing to base it on”.

He said that’s understandable and proceeded to list some of the triggers:

  • Consistent headache, untouched by pain medication,
  • Dizziness,
  • Vomiting
  • Sleepiness,
  • Affected speech, as in delayed/slow,
  • Double and/or blurry vision, or
  • If you try to look from side to side and your eyes don’t “feel right“.

PS. I’ve felt all of these over the last few years…

His constant use of; “I don’t feel right” is comforting because, sometimes, that’s the only words you can find to describe what you’re feeling. (I’ve often felt like that’s not good enough and doctors won’t understand BUT, with him, it’s different).

He confirmed everything I’ve suspected all along, which just gets my back up, thinking about all the other nitwits I’ve dealt with! Making me feel like I’m going insane and losing the plot. Like a bad memory, their real names are forever etched in my brain. Grrr…

Further questioning:

4. What about my spinal degeneration, I can’t remember what you said about that? It’s been bothering me since I was in ICU, probably due to being in bed all that time.

He explained the symptoms one feels in order for him to consider surgery, which is an option, in time to come (not now). We agreed that I’ll monitor myself, over the next 4 weeks, before my follow up with him. And, discuss it further, if need be.

5. When can I wash my hair and when will the stitches come out?

By tomorrow. He encouraged me to wash it as “roughly” as I can handle, not letting it form a scab. Also, since it’s dissolving stitches, he said it will disappear in time. The stitches were removed before my discharge by one of the nurses.

6. What’s the expectancy of a revised ETV?

We are hopeful that this one will last for a very long time but he has seen some instances where they last a little longer than previous closures. The timeline increases every time (I found this interesting). Let’s hope 11 years, 5 months and 2 days is my baseline! However, it could also be less as its unpredictable but, we hope for the best.

7. What’s my backup plan? How do I get in touch with you, should I become symptomatic?”

Call his room and come to the hospital emergency, if need be. If I become symptomatic over the next few weeks, he will order an MRI and assess. If required, shunt surgery will go ahead. Otherwise, I’ll see him in 4 weeks time and we’ll take it from there.

We have a plan in place. That gives me comfort!

I feel utterly blessed to have this surgeon cross my path. When I was searching for a replacement for Dr “N”, the word “empathy” caught my eye. Whether it be on his website or a review from a previous patient, I cannot remember. I knew that was what I needed, someone with empathy. He has gone above and beyond my expectation.

When we first started talking, I asked if I could use his full name in my blog, saying; “As you know, you’re the 15th doctor I’ve consulted with in the 14 years since diagnosis. So, to me and everyone who reads my blog, you are Dr “O”. He laughed and agreed, saying; “Yes, of course. No problem”.

I asked him if we could take a photo (the post image), he agreed, removing his theatre cap. The nurse and I both protested, telling him to leave it on. She told him it looks more professional and I agreed. He felt he looked better without it but, 2 women against 1 man, he didn’t stand a chance😊

He gave me strict instructions to rest and take it easy. I pointed to my T-shirt and promised to take it “moment by MOMENT”. He smiled, nodded yes, shook my hand and left.

EVD stitches (x3 – forehead) before removal. My daughter was hoping it would be a Harry Potter scar ⚡️ 😆. ETV stitches (x10) above that.

I’ve been discharged and am now resting comfortably in my own bed. Jesse, my black Labrador, lost it a bit when she saw me, barking uncontrollably and hasn’t left my side. Life is back to normal, “sort of”.

The look of 😍, paw 🐾 and all :-). 2 weeks is a looong time to be away from the one you love! The feeling is mutual…

Published by Skyewaters

I blog about Hydrocephalus to give a voice to the millions (if not billions) of people around the world with this condition NOT disease.  As much as these experiences are unique to me and my family, I’m sure others have experienced it too.  My aim…to shine a light on it and raise awareness – simple and challenging at the same time but worth it!

9 Comments

  • Lesli Chinnock Anderson

    May 29, 2021 at 10:04 pm Reply

    Such an encouraging, hopeful and honest discussion of hydrocephalus. I’m SOOO glad this went well, and I pray this lasts a LONG time! Thank you for writing!

    • Skyewaters

      May 29, 2021 at 10:46 pm Reply

      I hope and pray for that too🙏🏼💙

  • Kate

    May 18, 2021 at 6:19 am Reply

    My 16 year old daughter’s vp shunt became infected earlier this year. Initially a 5 day hospital stay with a further 5 days of iv antibiotics at home. Few days later back in hospital for an emergency externalisation. A 3 week stay with an EVD & another surgery to re-insert a shunt. 5 days at home & back in for unexplained abdominal pain for 9 days! A whirlwind of emotions for both her & us. I feel we can truly empathise with you. So very glad you’ve found a neurosurgeon who “hears you”. Long may your etv last.

    • Skyewaters

      May 18, 2021 at 7:56 am Reply

      Shunts are so unpredictable, as is Hydrocephalus! I’m sorry to hear she’s had to go through all of that but, I hope she’s doing much better 🙏🏼
      It can take its toll on everyone and for that, I in turn, empathise fully with you💙

    • Kieran

      May 18, 2021 at 8:28 am Reply

      So sorry to hear of your daughters problems. I was born with hydrocephalus in 1961. I am 60 now and have need a good few operations. I.still have many side effects but life is still so special. Some people go through life with hydrocephalus and do not have many problems. I hope your daughter is one of the lucky ones. If she has a problem seek out a specialist. General doctors can rarely be trusted in my experience. The complications and side effects are mostly unknown to family doctors

  • Kieran

    May 18, 2021 at 3:32 am Reply

    All so very harrowing. You truly have been through far too much.

    • Skyewaters

      May 18, 2021 at 6:06 am Reply

      Too many of us walk the same path though, I know I’m not the only one. My aim is to highlight this and bring awareness for all of us.

  • Kieran

    May 18, 2021 at 3:29 am Reply

    So sorry to hear of all your tribulations. It is very hard to take that you cannot get the proper treatment at the required time. There are too few true specialists in these fields in the world

    • Skyewaters

      May 18, 2021 at 6:05 am Reply

      Thanks Kieran. There certainly are too few of them, especially the ones who go above and beyond.

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