With regards to the headaches Morgan has been having, we had a telephone appointment on 7 May with the neurosurgeon to discuss the results of the MRI.It was really good news that theresults were ‘stable’ and nothing has shown up from a medical perspective.
Morganupdated the neurosurgeon on the physio and other exercises she is currentlyundertaking to try and help the headaches as she doesn’twant to be taking pain relief. The neurosurgeon thinksthis is all good and is confident that more time to recover from the two operations will make a big difference.
I asked aboutthe sleep studyfor whichMorganhad been referred by her spinal consultant. It was agreedthat this should be carriedout. As a resultMorgan has now had this done at home and all readings, apart from her CO2 levels being slightlyhigh, were within the expected limits.
The appointment was replaced by a telephone appointment, as there are no x-rays etc required at this review. It is carried out by a spinal nurse who asks a number of questions. Morgan updated the spinal nurse on how she has been, her pain, what activities she is now trying to resume and also on the numbness in her back, which the spinal nurse said can affect some patients longer than others. The spinal nurse said that Morgan can now do pretty much anything providing she feels comfortable! So Morgan can now go rock climbing, skiing, hand-gliding, trampolining (as long as there is a net!), climbing trees, horse riding and falling downstairs are all ok as her back is now quite strong. From my perspective, I am pleased to say that none of those activities appeal to Morgan so there is no fear of her participating – she just wants to get back to dancing, singing and acting!
This is recent photo of her scar. It looks really good and over the past few weeks there has been little change in its appearance.
Morgan’s next appointment will be at the end of September/beginning of October which will be her one year post-op review! At this appointment it will be full scans, x-rays etc etc.
Apologies to anyone following my blog for not keeping it up-to-date, but clearly the events that are happening at the moment are having a major impact on everyone and everything. However, despite all the uncertainty, we somehow find the strength to carry on. For Puddle this has meant continuing to live with the headaches, which on some days are worse than others. After giving her pain relief including Paracetamol, Ibuprofen and migraine tablets none of them appear to have worked. Her school have been supportive in that she is sitting 3 mock exams at home. Little did we know when we made that arrangement that the actual GCSE’s would be cancelled for this year’s students.
Since my last post Puddle went back to the hospital for an MRI on 24 March and we are awaiting the results. As previously mentioned, we are hoping to rule out any medical reason for the headaches and are hoping that given time and more rest, Puddle will feel better.
Puddle was seeing a physio twice a week who was working on her back using massage techniques to help the muscles. This has been extremely beneficial but now the lockdown has been put in place, it has stopped for the time being.
Puddle is continuing with her exercises and she is trying to work towards rebuilding her strength and flexibility which is going to take time.
Well everything was going as reasonably as it can but Puddle’s headaches are now more frequent and can be really bad, to the extent that it is affecting everything in some way. There are some days when I collect her from school and she can only walk very slowly because it makes her head pound. For this reason, the arrangement we have with school is a relief as she is only there part-time and studying at home the remainder of the time.
I am in regular contact with the neurosurgeon at the hospital regarding Puddle’s symptoms. We have tried giving her regular Paracetamol for 3 days but it didn’t appear to do much to help her. Further to another conversation with the hospital,she is now taking regular Ibuprofen and I have to contact the hospital later this week. Puddle has an MRI booked for 24 March, but in light of how she is the hospital are trying to bring the appointment forward.
I have discussed with the hospital if the headaches could be worse due to the amount of studying Puddle is doing. Or could it be the start of migraines. All this is still being discussed but I am hoping that after the MRI has been done we might get a better idea.
Puddle has had a reasonable week despite her shoulder pain and headaches.
She has been back to the physio and had very gentle massage which seems to be helping Next week we have two sessions booked.
With regards to dance she is still only doing lower level classes and it can be frustrating for her at times because she can only do so much. Her teacher is brilliant and is really supporting her. Balancing school, dance, singing and piano can be difficult at times to ensure she isn’t overdoing things.
Today Puddle sang a variety of songs at her grandad’s care home. Her grandad was diagnosed with Alzheimer’s about 10 years ago, so she regularly goes and sings for him and the other residents as they love listening to music. It also makes it extra special because it is his grand-daughter singing!
Along with singing some current and musical theatre songs, Puddle also sang a mixture of older songs as the residents were able to join in. Some residents found the war songs quite emotional and commented on Puddle’s excellent singing.
The carers and relatives of the residents were also very interested in learning more about Galaxy UK Pageants,and Puddle was able to raise some more money for her chosen charities. Overall it was a very rewarding day as she was able to spread some joy!
Puddle continues to recover well. This week is half-term from school and we are trying to balance school work and have some time out.
We are continuing to find ways to help Puddle with the pain she has rather than resorting to tablets. We hope that regular gentle massage might help and Puddle has been for her first appointment this week. It eased the tension in her neck and shoulders and she feels this could benefit her by going every week. Fingers crossed!
Today we were back at Sheffield Children’s Hospital for Puddle‘s follow-up appointment subsequent to her CT scan in December last year. The headaches and blurred visionhave been a cause for concern as Puddle never suffered from headaches before her first operation.
Theneurosurgeon saidthat some patientssuffer withheadaches and vision post-op. Theycome on out of the blue and can disappear just as fast. She checked Puddle to see if there was any swelling at the back of her neck which there wasn’t and checked her vision. She stills wants her to have an MRI just to be sure so an appointment is being arranged.
She did remind Morgan again that she has had 2 major operations and years ago she would have been in hospital a lot longer recovering and not sent home a few days after surgery.
She thinks gentle massage could be beneficial to Morgan as being in exam year is not exactly the best time for her and this could be having an effect on her symptoms.
She recommended plenty of rest, fluids, and stopping screen time running up to bedtime. We have been doing all that anyway.
So I guess we have to keep going and hope it all settles down.