Jump to content

Spinal Adhesions


Recommended Posts

Hello all,

 

Thought I would post a bit of an update and maybe also see if anyone else has any experience with this.

 

After posting about my movement issues back in November I had a meeting with my OT and she had me reassessed by the physio who I had been seeing. From this I was told that my movement issues were actually now different to what I had upon first leaving the hospital and I was showing signs of neurological damage in the lower limbs that was not there before.

This was on the Friday and I went to see my specialist on the Monday as I had already been in contact with them about it too. They sent me for an emergency MRI that afternoon to see if there was anything happening brain-wise. This came back with no change from my last MRI in summer. I was then referred for a full spinal MRI which I had on New Years Eve.

 

On Tuesday I received a phone call from my specialist. The spinal MRI has revealed that I have developed adhesions on my spinal column around the lumbar region. This is as a result of the SAH and hydrocephalus. It is extremely rare and only occurs in the most severe bleeds. At the moment they can give me no prognosis. Adhesions form over a period of months and then usually stop. I will need to see when they stop and what damage is done then.

 

At the moment I walk with the limp continuously and need a stick for any distance. I am losing feeling in my right leg and sometimes drag it, but I can still get around.

 

I have been told that I can still start my return to work so had my first day back teaching yesterday, which was good :-) I am now waiting to see the spinal specialist to discuss my options. My neurosurgeon has said that it is permanent and the only real option is spinal surgery, which I will have to think very carefully about as I imagine it will carry some quite severe risks.

 

Having been told how rare a complication this is I know this is a long shot, but has anyone on here come across this before either personally or in their role as a carer? I am obviously not looking for any medical advice, but more to see if anyone had an experiences to offer.    

 

Happy New Year to everyone :-)

Gemma x

Link to comment
Share on other sites

Hi Gemma - I, personally, have not experienced anything as you have described.  However, I do seem to add or change some new phenomena as I go along.  I won't bore you with them as they are peanuts compared to what you are going through.  I'm so sorry this is happening to you.  It seems like we go through enough recovering from sah but the healing goes on.  

 

Keep "hounding" your docs and think carefully about what you should go forward with.  I don't know how your insurance or your medical things work in UK - so I don't know what options you might have for multi-specialist opinions.  Our insurance in US is all about money and is hard to deal with when you are sick or severely ill.  

 

Take good care of yourself.  Do not lose hope.  Picture yourself walking perfectly without a cane - even when you have to use it.  Keep your chin up, keep positive, see your future as a great thing.  Believe in it.  

 

Love and positive thoughts on the way

Carolyn

  • Like 3
Link to comment
Share on other sites

Hi Gemma

 

So sorry to hear about your spine, must feel like a real setback. Only time will tell by the sounds of it which must be daunting,  not knowing what the future holds.

Glad your first teaching session went well, what age do you teach? I used to work in a primary school with Year 6 - I loved it!

 

I hope somebody here has some advice for you,  in the meantime continue being as strong as you have been. You have been so sympathetic and supportive to me and I will be rooting for you!

 

Take care

Clare xx

Link to comment
Share on other sites

Hi Gemma,

 

I was told I'd never walk after my SAH, and my back aches, lower back pains. 

 

Firstly it made me angry to go through all what we did, then to be told "What makes you think you will walk again"  so red rag to a bull.

I tapped my feet anger signs lol  looked at him and said "What makes you think I wont" he just shrugged.  I was bed bound then and couldn't get to the toilet on my own and needed my dignity back.

 

So 6 years later I can go to the bathroom alone, seems little but I am getting there.  The other night I walked 2 aisles in a Supermarket.

Little steps but I feel better.  So never give up !! When they say it cannot be done tap your feet and say I will do it. 

 

My back really hurts after walking but I feel shattered but good that I walked 150 yards,  tomorrow Everest lol. Also when I went swimming the man said we will get you walking, and he said to me if you don't need your stick do not use it. 

 

Good luck

I hope your back feels better and everything goes well for you.  My aim is to stand and have a shower.  xx

Love

Win xx Good luck in all you attempt xx

  • Like 1
Link to comment
Share on other sites

Hi all,

 

Thank you for your replies :-)

 

Carolyn - I have been referred on the NHS so will see a spinal specialist within that and be referred on if needed. I am planning on calling my neuro specialist next week to check and see how things are going and discuss my options further with them. Thank you for your positive thoughts - I hope you are doing well and not experiencing too many post SAH issues.

 

Clare - yes it does seem rather a big setback at the moment, especially as I am trying to make my return to work. I teach History and Geography in a secondary school and was also in charge of Gifted and Talented and also a pastoral leader prior to my SAH. I have already dropped the G&T to concentrate on getting back to the teaching, but am leaving my decision about the pastoral role until a little later in my phased return.

 

I do not know how the back issues will affect my going back to work, but hopefully I will be able to make a sustainable return in some capacity - I enjoy doing my job so would like to continue doing it, even if it was less than full time. Thank you for rooting for me :-) It is much appreciated.

 

Win - You are right about never giving up. I do have a stick to use when I get really bad but am trying to use it only when really necessary. Thank you for sharing your experience. I am always in awe of how much you have overcome and your positivity :-)

 

Gemma xx

  • Like 2
Link to comment
Share on other sites

  • 5 weeks later...

Post Neuro I am told my Hippocampus is larger on one side than the other, which I saw myself in the MRI yesterday. My Neuro tossed a name around M V Stenosis? She said not to Google it until the EEG. The radiologist whom read my MRI said not to rule it out but not enough to see if it's there.

I plan to show her your post. Thank you. Let's keep talking. Have you had your follow up?

Link to comment
Share on other sites

Hi Golden Willow,

 

Thank you for posting - it is interesting that they think your MRI has shown something up. You will have to let us know what the follow up on it says. I know the adhesions I have been left with are quite a rare side effect and from things I have been told and found since I now know that I did have some of the risk factors for them (such as a high grade bleed, being in a coma and immobile for a period of time and having to have a shunt fitted).

 

As for me at the moment I *think* I might have stabilised somewhat, which might suggest the adhesions have stopped forming. I see my physio every fortnight and there has not been a deterioration in my movement or feeling over the past couple of weeks, so that is good. I am going to see the spinal specialist on the 22nd of Feb so it will be interesting to see what they say. Will let you know.

 

Take care,

Gemma

Link to comment
Share on other sites

Thank you for sharing indeed. Both situations are very different,however, I am willing to show only Neuro situations such as your that, when I read, if I get a twinge, I review it further.

They also want to do an MRI on my spine, which I wish was done during the head MRI. I asked why they didn't, said they couldn't because it wasn't ordered. Urgh. Moving forward.

Thank you.

  • Like 1
Link to comment
Share on other sites

  • 2 weeks later...

Hello Golden Willow (and anyone else looking in),

 

Had my appointment down in London with the spinal specialist yesterday. It was quite interesting as I got to see all the MRI scans for my back and spine, which I had not seen before (on a side note I was quite surprised at how big the shunt in my head actually is!)

 

Anyway, the specialist talked me through all of them and from what I have understood I do have adhesions on my lumbar vertebrae from the bleed, which might be causing some issues, however they are not that concerning in the grand scheme of things and there is not anything that can be done about them.

 

What is more concerning (apparently) is that I have pockets of CS fluid near to my thoracic vertebrae between my shoulder blades and it is these that are causing all the issues with walking etc. From just my scans the specialist had expected to see me yesterday and book me in right away for surgery, however having now met me he has agreed to hold off for a short while. He was surprised at how well I was still mobilising (I only require a stick when out for a full day in town, not around work or home) based on the issues with my spine.

 

What we have agreed is that I will have another MRI in April to get a more detailed view of my thoracic vertebrae and will then see him again in early May. He says my only option is surgery and he wishes to do it sooner rather than later as all the surgery will likely do is stabilise me at the point I am currently at, therefore the better I am going into surgery the better my long term prognosis is likely to be.

 

I am quite glad he is going to hold off for a short while as I am currently trying to return to work. I am also currently out of sick pay, having just spent a year off work recovering from the bleed. Luckily my sick pay will resume as long as I am in work on April 1st, which will take some of the financial pressure off at least.

 

Our current thinking is that I will have the surgery in around June/July as then I can have the summer off to recover and then hopefully return to work come September. My plan was already to return part-time after my phased return and now I know I am likely to have these movement issues forever then I will lock in a part time timetable prior to my surgery. I am currently going into work for 3 days a week and teaching 11 lessons as of this week. I am hoping to see around April/May time what I am happy doing and then agree to that for the next academic year.  

 

Anyway - that is about it. Not sure it will be of any use to you Golden Willow or anyone else, but thought I would post it in the off chance that it is. It is disappointing that it seems spinal surgery is my only option, however I guess I am fortunate to be near a hospital with such as specialist team.

 

Gemma x

  • Like 3
Link to comment
Share on other sites

Hello Gemma- thanks for your update. You do seem to be fortunate in the support and advice you are receiving from the specialists. It must be reassuring to know where things are medically, and that you now have a plan in your mind for how the next seven months will shape up.

 

Your teaching vocation certainly will help in your recovery this year with that valuable time off in the summer, to check your progress and decide realistically what is best on your return to the Autumn term.

 

More surgery is always a time of apprehension but it is great to see your positive approach, and I hope the months ahead will help you make the right decisions.

 

It is always that fine balance of wanting to get the best recovery as quickly as possible tempered with knowing when to accept that you also need time to get the best results, and of course the courage to adjust your expectations along the way.

 

Wishing you well

 

Subs

  • Like 5
Link to comment
Share on other sites

Hi Subs,

 

Yes the specialists I have seen have all been excellent. I have also been very fortunate with my workplace. When I informed them of this latest turn of events yesterday they said they were happy to accommodate me. The plan remains that I should continue on my phased return until after Easter and then get my timetable set up for September and then hopefully have the surgery around June time.

 

More surgery is definitely causing some apprehension - especially as my SAH occurred during surgery/ To be fair I have obviously had a number of subsequent surgeries since then to deal with the bleed and hydrocephalus, I just don't remember any of them! I will simply have to trust in the medical team and hope for a good outcome. Having the time off work and the summer off will be a bonus which will hopefully allow maximum time for recovery and then allow me to return to work part-time in September.  

 

Gemma x

  • Like 1
Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Guest
Reply to this topic...

×   Pasted as rich text.   Restore formatting

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

 Share

×
×
  • Create New...