So for the last 17 years of my life I have been having frequent dislocations of my jaw to the point that I don't even count any more. Well today I finally saw the maxillofacial surgeon at the Bristol Dental Hospital. I arrived at about 15mins early and then the clinician was running nearly an hour late. This is not unusual in a busy clinic, I should really have taken something to do while I waited, something to think about next time.
The surgeon I saw was a very nice chap and asked how long I'd been having the jaw dislocations, how often and can I get them back in myself. For me luckily I can get it back in myself whereas some of his other patients are frequent A&E visitors, I avoid the hospital as much as possible.
I'd had an X-ray the last time I attended the dental hospital so he'd taken a look at that and said that my jaw joint was an abnormal shape. He wanted me to go for a CT before a decision could be made about which surgery I was going to have. It was nice to know at he'd had another patient with EDS who had surgery with him and came through ot well. I mentioned to him when he'd asked if I'd had any other surgery about my top surgery and it turns out he'd worked at Charing Cross in the past and knew of the GIC team there, I swear most of my specialists have done a stint at Cahring Cross.
All in all it was a short but productive appointment. I should receive a letter in the post about the next appointment and one for the CT scan too. They are hoping to do the surgery once I've recovered from the lower surgery. As it has already waited 17 years I'm sure a little while longer isn't going to do too much damage.
Showing posts with label HMS. Show all posts
Showing posts with label HMS. Show all posts
Wednesday, 24 September 2014
Tuesday, 9 April 2013
Stanmore, 1 year on.
On Friday 5th April I went to RNOH Stanmore for my 1 year follow up appointment. I still cannot believe that it has been over 1 year since I was in, the time went by very quickly. The last time I was there the ward was still closed after the flooding under the floorboards had happeend. Now that has all been fixed and they have swapped the mens and womens wings around so it was quite disorienting.
The first part of the follow up involved a group session to refresh things in our memories, catch up with how everyone was doing and any helpful tips that people have picked up along the way. It was very interesting and I was quite pleased that on the whole it was a positive experience with very few negative comments. It was nice to see some familiar faces, I got chatting to some of the people who had been on a previous course too. They hadn't heard of e-motion/power assist for manual chairs so I told her about that, so I was useful for something!
After the group session I had a one to one session with one of the psychologists. I had seen her for a few sessions in the last week before I had left. We talked about how I was doing and what I wanted to do in the future. I expressed some concerns about ongoing needs going forward once I am discharged from there. I was very concerned about the lack of knowledge locally, most drs don't know what to do with me. We also talked about a possible second stay, 2 weeks instead of 3 weeks. Part of the plan for the second stay would be intensive physio and psychology sessions, I won't need to go in for all the other sessions that I had already been to last stay.
They have made some changes to the program since I was last there. One of the big things was that before you only routinely went to the psychology sessions if you were on the pain management program but not the rehabilitation one. Now both groups of people do the psychology sessions, as they figured out that both groups of people had needs for them. I think that was one thing that was overlooked while I was there, as for my group you had to ask for the help and I wasn't confident enough to do so until the last week, days before I was leaving.
The psychologist is going to put forward the recommendation that I go for another stay, then it will be up to Dr Cohen to say yes or no. Apparently I shouldn't have a problem getting in for another stay because I can show that I'm trying to do the right thing and am applying the things that I have been taught so far. I'm seeing Dr Cohen in May so hopefully it wont be that long of a wait until I know whether I will be going again or not.
The first part of the follow up involved a group session to refresh things in our memories, catch up with how everyone was doing and any helpful tips that people have picked up along the way. It was very interesting and I was quite pleased that on the whole it was a positive experience with very few negative comments. It was nice to see some familiar faces, I got chatting to some of the people who had been on a previous course too. They hadn't heard of e-motion/power assist for manual chairs so I told her about that, so I was useful for something!
After the group session I had a one to one session with one of the psychologists. I had seen her for a few sessions in the last week before I had left. We talked about how I was doing and what I wanted to do in the future. I expressed some concerns about ongoing needs going forward once I am discharged from there. I was very concerned about the lack of knowledge locally, most drs don't know what to do with me. We also talked about a possible second stay, 2 weeks instead of 3 weeks. Part of the plan for the second stay would be intensive physio and psychology sessions, I won't need to go in for all the other sessions that I had already been to last stay.
They have made some changes to the program since I was last there. One of the big things was that before you only routinely went to the psychology sessions if you were on the pain management program but not the rehabilitation one. Now both groups of people do the psychology sessions, as they figured out that both groups of people had needs for them. I think that was one thing that was overlooked while I was there, as for my group you had to ask for the help and I wasn't confident enough to do so until the last week, days before I was leaving.
The psychologist is going to put forward the recommendation that I go for another stay, then it will be up to Dr Cohen to say yes or no. Apparently I shouldn't have a problem getting in for another stay because I can show that I'm trying to do the right thing and am applying the things that I have been taught so far. I'm seeing Dr Cohen in May so hopefully it wont be that long of a wait until I know whether I will be going again or not.
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