I hope so too. I know that Dr. S is ānot the second comingā and that he has no magic wand and just uses the usual round of drugs but I have faith heāll stick with me, muddling along until something or a combination of meds offers decent relief. In the past, as soon as I was even marginally a bit better I was discharged from ENT or Migraine clinic care and left to get on with things despite assurances at the outset that consultants would stick with me and get me better. (I usually saw these consultants privately and in the NHS)
Dr. S has not offered to get me better or cure me but to work on a long term plan towards a better quality of life It gave me faith in him that he wasnāt promising a short or easy path to relief.
It really must be helpful to have somebody who is interested enough to be prepared to stick with you. Neither of the specialists I saw were interested, despite their adverts which stated otherwise and which were what drew me to them in the first place, and I saw both privately. They were only interested in giving a diagnosis and prompt payment. The neuro-otologist actually said he couldnāt help me further so much as he regretted it he wouldnāt be able to take any more money from me. Honest, at least. I assume specialists think GPs have the knowledge and resources to manage MAV. Some do I suppose but personally Iāve yet to meet one. Itās a sorry state of affairs really in these modern times but thatās just how it is I guess, Success with MAV, however you measure it, can depend on the individual you end up with, and their enthusiasm for their subject. @jojo65 has had success, at last and she says she has a young female neurologist who promises not to abandon her. Helen
The neuro-otologist I saw wanted paying in advance. The second, migraine specialist neurologist, sent a bill offering 14 days terms, and the very same day it arrived I had two quite abusive messages on my ansa machine (she obviously uses a debt collecting agency) saying payment was overdue! And more calls next day. I was annoyed because my husband had already posted cheque by return before Iād checked the ansa machine or she would have waited the full 14 days on principle! Helen
Hi @sputnik2 Iāve no answer to your question Iām afraid but I certainly suspect some sharp practice going on here (extremely poor way to treat you cancelling a long awaited prebooked appointment the day before!) but if you are NHS patient you have nothing to lose by seeing the ānewā bod. After all you you know the diagnosis so if he is a Professor and running the same balance centre to the same remit, Iād say heās well qualified to review your meds. Sticking my neck out here but I suspect - just like Dr S - he just works his way through his own preferred list of preventatives using trial n error just like all the others. Thereās people on here who have seen Dr S and improved and probably just as many whoāve been worked through the list and not, together with many others of both camps who are with other consultants. MAV prevention is so much trial n error. Itās not surprising. I read only the other day in some medical paper that any one particular migraine preventative is at most likely to help 50% of those trying it. Now whether the new gene sequencing technique now available in some countries will eliminate the need for so much trial n error Iāve no idea. However, here in the UK it would first need to come into use. For now we are stuck with trialling. Helen
Hi everyone - I hope you have had a good summer. Just a quick update about D S and being moved from Medway. I saw him on Tuesday 3rd Sept at Medway Maritime and he warned me that he was being moved, but still didnāt know when or where. He said that I would automatically be transferred to where ever it was with him, so thatās good to know, but I hope it wonāt be somewhere miles away. That said my next appointment is in July 2020 by telephone, so it wonāt initially affect me I guess. Jan
I wouldnāt be surprised ! I might get more of his time as a virtual patient as I was in and out in about 3 minutes this time, having queued for 20 minutes to get a parking space.
Iām so glad I read your comment. I live in York and am planning on going to see Dr S in his NHS clinic soon, Iāll be travelling down the night before and staying in a hotel, then getting a taxi to and from the hospital. If it may only be for three minutes, Iām now wondering whether to see him privately instead
I had a telephone appointment last week. Same message, clinic closing, looking for a new home but will take all NHS patients with him. He told me this same thing in December, 2018 so perhaps is having issues finding somewhere (close to home). It seems a shame when he is so renowned and itās not as if he needs any specialised faclities, just a room and some admin support. Medway doesnāt have a great reputation so you would think theyād be deighted to have a centre of excellence there. Who knows what the issue is.
@Louise , I saw Dr S privately first for a ādiagnostic appointmentā as my GP wouldnāt refer me anywhere. It was scheduled for 40 minutes but lasted just over an hour. Then a private follow up (issues with GP prescribing for me and referring me on NHS ) which was supposed to be for 20 minutes but lasted 40 minutes. Both times his private clinic was over running by an hour. (which made the waiting room with dizzy carpets and harsh lighting absolute hell). The NHS appointments: I have only gone to Medway once, in and out in five minutes, 2 phone call appointments of 3 or 4 minutes. However, he only needed to quickly discuss medication and to tell me to up it. Perhaps someone who actually saw him on the NHS for diagnosis can tell you if that appointment was longer, Iām sure it must be as he did basic balance tests with me, discussed my history (decades of it) so that took a long time on my initial appointment, explaining to me how the MAV behaves/works and then deciding what med to prescribe.
The phone number for his NHS secretary should be on the Medway letter, you might get through or you can leave a message, you could ask how long the intial diagnostic appointment lasts. If that fails I posted a note to Medway a few weeks back as my phone appointment had been cancelled and I didnāt know if the new one was a call or in person. The secretay phoned me the next day. (The old fashioned ways still seem to work). Iām sure he wouldnāt bring you all the way from York for a few minutes. Dr S told me that the idea is to get you set up on the right meds and regime so that takes time initially and then do follow up phone appointments if all is proceeding well.
I really hope your appointment goes well and you get some relief.
Certainly your best option Iād imagine. Iāve read loads of write ups on here of reports of visits to his clinic but itās often impossible to know whether the person was NHS or Private. Itās just not discussed not in the ones Iāve read. @sputnik2ās on the ball as usual. Iād not attempt to better her comments however and hereās where itāll probably get a bit political I find it intensely annoying that people need to travel such distances to see a particular specialist. It shouldnāt be necessary. Expertise should be spread more evenly over the country. It often seems āeverythingā is located in the South East. Everything except quite a large portion of the UK population that is. Particular with conditions such as MAV where travel/motion sickness occurs, thatās particularly unfair. I could never have done your intended journey at the start of chronic MAV. Even now improved as I am I doubt I would cope. In fact Iād pretty much guarantee I wouldnāt.
I find it amazing if you are in York which is a huge place in itself thereās nothing nearer home Available. Sheffieldās 60 miles distant. Ever heard of this place? Indeed has anybody heard of this place. It appears to be a Balance Centre which means it works on the same basic principle as Dr Hainās set up in Chicago Iād imagine.
They refer to MAV as āMigraine Variant Vertigoā. See under āConditionsā. Helen
@Onandon03 that places looks good. Perhaps it has not been going that long. Private, of course. Iād like to have more info on the consultant. I thought that was a bit sketchy. I like to see a history and bit about how they think.
Private balance clinics running outside the consultantās NHS hours do seem to be popping up outside of the major cities. Here is one in Belfast http://belfastvertigoclinic.com/ which has Dr Hainās site highly recommended in its links, so I would expect it would be on the right track for MAV. Perhaps, treatment and knowledge about MAV is finally improving.
Hi @Louise - I think @sputnik2 has summed it up well - I am glad that I went to see Dr S as a private patient as it speeded things up for me, plus I didnāt feel rushed, but I was also kept waiting. Interestingly I have never been kept waiting at Medway! Hopefully for an in initial appointment you will get longer than 3-5 minutes. It might also be worth investigating the Vertigo and Balance Centre that Helen has discovered - a bit closer than Medway - Dr S diagnosed me with Migraine Variant Balance Disorder which sounds very close to the Migraine Variant Vertigo condition at Sheffield. Jan
