Two Month Post-Op Update

Hi Everyone~

Wanted to let you know how things are going with me. I had surgery on Sept 9th in London, Ontario Canada. I had the external approach on the left side, where my scans showed close proximity with the external carotid.

Before surgery, I was very limited in what I could do, and generally felt awful. I had: circulation problems, orthostatic imbalance (bp issues, not regulating itself as it should), eye pain and vision problems, severe problems if head turned to the left, neck and shoulder spasm, neck, face, shoulder and head pain, weakness on my left side, occasional stroke symptoms (including my tongue off to the side, drooping face and eye, tingling and weakness on the left side). I had a very hard time going to bed in case my head turned to the left. When I woke up with it accidentally turned to the left, I had hours of severe symptoms- left side tingling, rushing feeling to my eye, rushing feeling to my stomach followed by nausea, severe chills and teeth chattering, arms and legs had rhythmic spasming. Blood pressure dropped, felt like I was having a heart attack. When I went to the hospital feeling this way twice, both times I had an inverted T wave that went away after the 'attack'. It became very scary going to bed for fear of my head turning. On top of that, exercise gave me neck and head pressure, dizziness, and weakness. Looking down to cook or read- or anything else, also gave me dizziness and eye pain. Swallowing was difficult at times- especially when it was cold outside. I suspected that my styloid was compressing the vagus nerve, as I would get neck pain when I had stomach issues, and my stomach would spasm when my neck was at its worst. There seemed to be a relationship there.

So- long story short- surgery was done and my life has changed entirely. I am 95% better than I was, with only a few symptoms lingering, although they are not as severe as they were. (I have spasm in my neck and shoulders, worse when its cold- and even a bit of trouble swallowing if I get really cold.. I also still get palpitations with a fluttery feeling in my neck. I'm hoping both of these will improve as I continue to heal and the nerves calm down the rest of the way) I can't tell you how thrilled I am that I found someone to do the surgery, and that it worked out so well. I feel so blessed, and I have a new lease on life. I am walking/jogging 5 miles a day, turning my head wherever I want to, my eyes look healthy and focused again- and I keep getting comments from friends and family that I'm back! I feel it, and I see it.

The down side to my story is that my doctor does not want to become an ES specialist. He sees cancer patients from all over as he is highly revered for that specialty. His waiting list is 16 months on average...and I was lucky enough to have surgery 11 months after seeing him.

My advice to those still seeking a doctor is this: Find out who the Chief ENT is in your closest metropolitan area. Ask for a referral to him/her. Describe the whole situation, and take a binder with medical journal case studies along with you. If your doctor is open to it, this can show the potential issues of leaving the styloid as it is- most doctors have no clue that ES can be so serious. List your symptoms, and take the results from the ES survey, in case they are willing to read that other people are experiencing much the same thing. A really good head and neck surgeon works in the area of the styloids all the time, and will know what to do to help you. The key is finding someone one confident and experienced. I encouraged my doctor to take as much of the styloid as he could. He left 1 cm- it was 6 cms long.

Feel free to message me if you have questions. I am happy to say that I am off on a vacation as I write this- the first one I have felt healthy enough to take for years. :)

Wishing you all the best. Keep hoping, and do all you can to advocate for yourself. I honestly never thought I would feel this much better...I was afraid to hope for it in case it never happened. I had been told this was my new normal. I saw 9 different doctors. It was a REALLY long road. But relief has come. I believe in prayer, and I recommend a lot of it. :)

Good luck to all of you!!

Ang

3 Likes

Great!! Glad you are feling so much better

Ang, blessings and prayers for more healing. It is a pity that your doctor does not want to be known as an ES specialist. I hope people will find a way to get to him somehow if they are in tremendous pain because UK has so few know ES specialists, but for now I am so glad you are better.

What a wonderful outcome! Thank you so much for sharing. I am one week post op and am thrilled to see what happens over the next few months. Yay for your story! So glad life is good for your again!

Fantastic post update, thank you for sharing Ang, gives so much hope. All the best with your full recovery!

I am so happy to hear you are doing so well! I am wondering, did you have throat pain? Where your styloids elongated?

Hi Ang, I am so amazed that I have exactly the same smptoms and fears as you had.I first had both styloidectomies in 2002.My left was the worst as it had grown into my throat.To cut a long story short,It has grown again and the left side is pressing on my carotid artery as yours was.It is pushing through my throat again.My ent surgeon took me to theatre to operate 2 years ago but didnt proceed as it was too dangerous.He sent me to one of the countries top ent surgeons,Mr Irving, but he too refused because of the carotid artery and 2 main nerves involved.I was then diagnosed with breast cancer and have had 2 years of surgery,chemo and radiotherapy so the eagles had to be put on hold.I am seing my surgeon tomorrow and I hope you dont mind but I am taking your letter with me.I know this is a big ask Ang but I am desperate.Could you give me your surgeons details?I could ask my ent to speak to yours for advice to doing the op.I would be so grateful if you could please.I am so glad that you are recovering well...........yrs sincerely Jan x

sorry Ang>my reply is further down! x

Thank you for sharing your story Ang…very uplifting and gives me hope!