Report From Prof. Aziz

I received a full report of my visit to Prof. Aziz on the Monday after meeting him that Saturday. It arrived very fast and it covered everything and a few things I had left out in my last blog post about the trip, so I said I’d go through it now.

In the report he outlines everything he went through during the visit.
He goes through my Diagnosis, My investigations to date, Current Symptoms, Medications and then he goes on to outline the visit in detail. Listing everything we had gone through and explaning the examinations he had done.

The main bulk of the new information about my abdominal pain is as follows, from the report itself:

On examination in addition to features of joint hypermobility she had severe allodynia which extended all the way around from the right side of her abdomen to the back, there was superficial tenderness over her abdomen, she also had severe tenderness on the left side of her abdomen, although less so than on the right side. She had evidence of angular stomatitis.

I feel that at least part of her abdominal pain is related to the anterior abdominal wall and she has a number of tender trigger points and there may be an element of anterior cutaneous nerve entrapment syndrome. The possibility of spinal nerve root compression causing pain, particularly all the way from the right side of the back to the abdomen also needs to be considered.

She has features of small intestinal bacterial overgrowth and likely has vitamin and mineral deficiencies. We also discussed the side effects of the drugs that she is currently taking, particularly opioids etc which will significantly affect her gastrointestinal function.

I have added links to explain all the new terms in there so be sure to click in and read those, I know I had to look them up!

His recommendations then are as follows:

  1. Slowly reduce Opioids as they are slowing gut function. Stop, Reduce and increase some medications as explained during the appointment.
  2. For small intestinal bacterial overgrowth I have suggested a prescribed antibiotic twice a day for 2 weeks following which she should take a probiotic.

  3. I would suggest that she sees a senior pain management specialist locally to consider splanchnic nerve blocks but it may also be helpful for her to have a spinal MRI of the thoraco-lumbar spine to make sure that there is no nerve root pressure.

  4. I have given her detailed dietary advice and have generally suggested a diet low in sugar and grains but high in white meat, vegetables and healthy fat such as olive oil. Overall I have also suggested that she should reduce the histamine content of the foods that she eats and have suggested some resources that she can look at. I have also suggested vitamins and minerals such as vitamin C, B complex, omega 3 and chelated magnesium.

That outlines the most of it, the next thing now is to make sure my doctors here get a copy of the report so that I can get the nerve blocks and other bits and pieces sorted out so I can properly start this diet.

I have started the food related side of the diet already and find it good, I just have to sort out the probiotic, vitamins and minerals now to go along with it.

My GP got a copy of the report this morning and my next appointment is for my Pain Specialist next Friday and I will fill him in on what needs to be organised regarding the nerve blocks and the MRI.

Thats it for now, I just wanted to fill you all in on what the report said. Thanks for reading this humble little blog and if you are out there reading, leave a comment to say hi! 🙂

Lette (Fainting Goat!) xxx

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Holy Nerve Blocks Batman!!

Hi everyone, (all maybe 2 of you who read this humble bloggie! 😉 )  I hope you are ‘both’ keeping very well? :p

Thursday, this week, was the day to get my Sacroiliac (lower back/top of pelvis near the hips) and Occipital (Back of the skull near the very top of your neck) Nerve Blocks in Croom Orthopedic Hospital with the Good and Great Prof. Pain Specialist (as I shall refer to him!)

I really like this guy, he is friendly, thorough, very helpful and LOVES History! 😀 When he speaks with you, if he gets a thread of a piece of history he may know about in the conversation, he will pull that thread and see where it goes! He likes to talk and looks like the epitome of a Pain Specialist, Tall, Slim, White Lab Coat over a nice suit and tie or sometimes he may be in blue scrubs, and there he stands with an ultrasound probe in one hand and an intimidating looking injection in the other and usually a large grin on his face! :p

Anyway! I had found the last 3 weeks or so very bad with pain, especially at the base of my skull and the top of my neck and shoulders and as I have been given admission in Harolds Cross from the 8th of February for at least one week and perhaps more, so I needed these before going, gladly, I had the appointment already given to me since my last admission in October where I had gotten my first Occipital Nerve Blocks.

It was a really long wait, my appointment was at 12 and I didn’t get in for the injections until after 2pm! He asked me how I was doing, reviewed my pain and pain meds and went in for the kill!! These injections are sore but not impossibly so. They have anesthetic in them so there is a numbing effect which kicks in after a couple of minutes, but the injection itself will make you squirm, just a little.

I got the injections under ultrasound and while looking at my neck he said he wanted to send me for an xray and following that an MRI. I will be called for those soon but he said he wanted to check for possible instability or anything that might give away what might be going on in my neck. He said it sounds like instability of the neck to him but it cant be seen or confirmed without proper scans and tests.

He explained that the clarity and contrast between a regular xray and an MRI wouldn’t have much in the difference but that it would be a proper start to the investigation of what is going on in my neck. Depending on what shows up or what doesn’t show up on these xrays, my next trip to London may involve an upright MRI to investigate deeper for instability or other complications.

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This is the pain progression from when I woke Thursday morning (First Line) during the hospital wait and injections (Second Line) to when I finally got home after the injections!

While behind me giving the injections in my sacroiliac joints he grabbed my ponytail and said,

“Perhaps getting this hair cut may help ease your discomfort? especially before starting in Harolds Cross”

When I asked if he really thought it would help he said he didn’t see why it wouldn’t at least help ease the pain, anything to cut any bit of weight off the neck is a good thing and that having to deal with hydrotherapy, pools and showers on a daily basis while in Harolds cross, would probably add more stress and strain to the neck so he thought it would be best to get it cut sooner rather than later! …so, I will! 😮

I had been planning for near months to get the mop cut anyway, its been over a year and its in dire need of a nice new doo!

My plan then for this week is to get ‘mah hurr dunn’, Relax and recover from the nerve blocks before starting in Harolds Cross. They take anywhere from a few days to a few weeks to kick in properly to kill the pain, so there is a small improvement at the moment, nothing spectacular just yet but I am hoping as the next couple of weeks go on, the pain will ease even more (I hope!) I have had them done many times before and sometimes they have worked great for a few weeks and then sometimes, I felt they didn’t do much at all. I will just wait and see how these go! 🙂 I have a Pots outpatients Clinic Monday Morning at 10am and have to meet my GP during the week to sort out my scripts to have ready for going up next week.

I have nothing major planned until I head to Dublin on the 8th of Feb, when I start in Harolds Cross, but I do want to update you while I am there also. I need to sort my WordPress app out on my phone, if not I will have to just take notes and do a full fill in when I am home!

Either way, I hope to find out if it is worth it for people like us.
I reaaaaaally hope it is! It would be lovely to have a place that provides safe respite for people with rare musculoskeletal conditions. I will keep you posted!

Until then, please keep up to date over on the Facebook Page, Twitter and of course The Private Support Group if you would like to share your stories, experiences or questions with like minded and like bodied people like ourselves in a private and safe environment, please feel free to join us, just send a request and ill be sure to let you in 🙂