Advice please from those post SCT about dentistry

[Marchhare7]

Hi everyone, thank you for reading. I'm now 2.5 years post transplant for myelofibrosis. My treatment was very intense which had left me with alot of long term issues. One of which is extensive nerve damage, ive worked with a pharmacist to get the best optimal (tolerated) dose of pregablin (now75mg bd) I have alot of mouth pain; tooth, gum, jaw ache and mouth ulcers (gvhd is minimal) in doing everything im told by my dentist but at my last visit i had a horrid experience and need your advice please. My dentist keeps telling me i need to brush more and the pain will go away, when i get tipped back in the chair i get vertigo and become disorientated which meant i couldn't follow his instructions. When he attempted the clean i couldn't tolerate the water in my mouth never mind the tools to clean, i said id rather not do the clean he shouted at me to get out the chair. I've got my next check up in a few months how do i approach my next appt?? Any advice welcome.

Ps, i only have oramorph as pain relief which i can't use before as it makes me drowsy. I have allergies to other painkillers

[Scaredy_cat]

It sounds as if the dentist needs things explained to him. Perhaps writing a letter with your issues explained to him without the anxiety of being in the surgery would help or get another more sympathetic dentist. As your sct was a fair distance away I assume your platelets are no longer low. I returned to the dentist last winter and went to the hygienist where I found the water far too cold and she had to do the clean without it. What with covid and my dentist changing buildings the water provided is different. The old stuff was warmer. Also while going through my sct I'd been on high fluoride tooth paste. I've switched back to sensodyne. When I visited the hygienist on Wednesday it was better and I could tolerate some water cleaning. Also I had a different hygienist and she was better, giving me lots of breaks.

[Marchhare7 in reply to Scaredy_cat]

Hi scaredy-cat, thank you for your advice. I will write to my dentist explaining everything.

Yes my platelets are great, holding up around the 200 mark consistently. All my bloods are great. I did have a few complications along the sct road and blood clots. I've had another one recently so I'm now on apixaban for life. I have been diagnosed with chronic pain and fibromyalgia as well which did add to my problems at the dentist, but wasnt considered, I am aware of the challenges around perception of this condition.

I can only use warm water at home, at my dentist is freezing cold! I will not see the hygienist at my practice as she is another one who screams at her patients! Thanks again I will spend some time drafting a letter.

[Ebot in reply to Marchhare7]

This sounds like a pretty awful dental practice. I’m not sure hygienists who ‘scream at their patients’ are the best recommendation! I’m guessing this is an NHS dental practice and things being what they are, you don’t have much choice. Lucky to have an NHS dentist at all and all that … Otherwise, I think I’d be hot footing it to another dentist. I hope you can resolve this.

[Marchhare7 in reply to Ebot]

Thats Ebot, yes NHS dentistry. When i had very low platelets and was bleeding alot she was sitting at me about not flossing, it's was quite ridiculous looking back so i put her in her place, told her to get educated or at least read my notes! Refuse to see her now , one because she's so expensive for what!? Anyway im hoping my dentist was maybe just having a bad day, fingers crossed for me. I know i don't communicate well verbally so I'm off to write that letter, thanks

[Ebot in reply to Marchhare7]

Yeah. Hygienists. They’re a mixed bunch!! Have to admit to having steered a careful path in the past! Good luck and much strength.

[hunter5582]

The behavior you describe is unprofessional and unacceptable. At a minimum, suggest you fire this dentist and find another. There are dentists who emphasize low-pain dentistry. you would likely fare much better with a better dentist.

[Marchhare7 in reply to hunter5582]

Hi hunter, thank you for your reply. It is something i thought about but unfortunately our dental system in the UK is in crisis no dentists are taking on new patients, im lucky to have a dentist. I will say I have been there years and have anyways had good experiences with him, even recommended him to others. But since being poorly things have not been good, i guess it's a mixture of pressures he's under and my pain. I'm going to write to them as i don't express myself well verbally, wish me luck

[Ebot in reply to hunter5582]

Unfortunately, if you’re in the U.K. and you are lucky enough to still belong to an NHS practice you can’t just ‘fire them’. (I suspect we would just ‘change dentists’ in any event!!) The chances of finding another NHS practice willing to take on new patients is currently slim to nil.

Whilst we (thankfully) don’t face the kind of issues patients face elsewhere across the globe especially in the US in terms of ability to pay for care and access to drugs, access to free / low cost dentistry is currently not the UK’s finest healthcare claim.