Surgery with Mr Hughes London this Friday

General
264

Hi, have any members used Botox injections to help with pain from First Bite Syndrome? If so can they share any tips or advice on this topic? Many thanks. D

265

I donā€™t recall anyone having botox for first biteā€¦ @Isaiah_40_31 has posted some tips for reducing it, I think keeping hydrated was suggested, nerve pain meds can help, and keeping an eye on what you eat & drink. Hereā€™s a link to a couple of discussions:
First bite issues? - General / Eagle Syndrome Stories - Living with Eagle

Hope that it improves soon for you :hugs:

2 Likes
266

Thanks for tips. D

1 Like
267

@PatientD - As Jules said, the thing I found very most helpful in reducing my FBS symptoms was to drink a lot of water/herb tea throughout the day i.e. 80 oz. I believe this helped because it kept my saliva more dilute which didnā€™t seem to trigger the FBS pain as readily. Iā€™m sure a lesser amount of liquid could be consumed w/ the same result, but I expect it would need to be at least 60 oz/day of non-sugary/non-caffeinated fluid.

1 Like
268

Hi @LivvySheep i have had a second opinion. Now waiting for a diagnostic steroid jab before surgery.

1 Like
269

Hey @Hema, thatā€™s great news! Who did you get to see in the end? Did you manage to see Mr.Axon/ Higgins?

270

I saw Mr Obholzer. He is willing to do a skull base removal but first wants me to have a diagnostic steroid jab. The lady who does the jab is on leaveā€¦so waitingā€¦its a long, challenging waitā€¦

271

Dear @Hema Im so pleased for you that you have a way forward, though Iā€™m sorry youā€™re suffering and struggling whilst waiting for your injection. Keep strong :muscle:, keep going xxx. I havenā€™t heard of Mr.Obholzer, where did you find him and what made you decide to have op with him? ā€¦I must updated on forum on my recent consultations Iā€™m just too fuzzy to type more atm but I will try to asapā€¦

2 Likes
272

Dear @LivvySheep I read his name mentioned on a fb eagles syndrome group. I also have an ent friend who has gone to Abu Dhabi for a year. Him and Mr Obholzer trained to become consultants together. This friend spoke very highly of Mr Obholzer. When I saw Mr Obholzer at my first consultation, I was very pleased with his attitude and all the time he gave me. Only issue is, he wont operate without a diagnostic steroid jab. So I will have to wait. The GP has just upped my pregabalin and also got a prescription for liquid codiene. Fingers crossed, this time will pass soon. Regards

2 Likes
273

That sounds good news for uk patients. How many surgeries for Eagles (with/without skull base removal) has he done to date? D

2 Likes
274

And does he have an NHS practice or is he private only? Thanks. D

275

Had NHS call with Mr Axon today. Not helpful as usual. He has Failed to obtain reply from queens Sq since July. Learnt Mr Higgins is on long term sick leave, I had asked for his diagnostic help. D

276

He is a skull base surgeon but I did not ask how many surgeries has he done. He did mention though, that he learnt the skull base removal technique from Mr Axon. But he is a very humble human being. He gave me 45 minutes at my first consultation. He asked me if I had insurance, when I said I donā€™t, he said it is imperative that I get a diagnostic steroid jab before going into surgery. He said that without the jab, he wonā€™t be able to justify the surgery. Went through all my brian mris and the head and neck ct scans in detail showing me images and answering all my questions.

3 Likes
277

He has an nhs practice at Guys Hospital but he said there is a long wait via the NHS.

1 Like
278

Thanks for this helpful information. Glad he is helping you. D

3 Likes
279

Saw Mr Hughes for checkup at week 5. One week early as have concern scar just under ear not healing well. He told me he and Mr O know each other and work together at Cleveland clinic. D

2 Likes
280

What did Mr Hughes say about the scar? I hope that it heals up soon for you :hugs:

1 Like
281

Thanks Jules. Curved scar just below ear has concerned me. Lymph & Thor help felt might be undissolved stitch or Seroma. But Mr H was reluctant to interfere & just said needed more healing time. I have stepped up my use of Cica gel dressing on that area of scar (a past tip from member here) & am avoiding putting nasal canula behind ear now to see if that can help healing.

There are other signs now that at week 5 my operation has helped me, but family member gave me bad cold/cough this week, so that is a setback to recovery.

Take care. D

1 Like
282

Did you tell him that I am seeing Mr O?

283

No of course not. I would never talk about another member.

2 Likes