Spinal compression t6 to t9

User

Posted 04 Sep 2021 at 15:44

Hi all

Have updated my profile earlier in year.Enza failing after less than year.Last week lost leg function out of blue during routine hospital visit.Kept in .Latest PSA 17 so cancer on march.Enza discontinued.Treatment 5 zaps of radiology just completed.Next week cabazital started with zeledronic acid and continuing of physio.Any advice out there from the community appreciated as it's all a lot to process.

Things like timscale to best recovery made.Am able to move feet and legs but not able to walk but they say early days. Getting physio everyday but having to have new cycles of chemo is going to impact on my progress I suspect.Physio evasive about whether able to drive again and says may be insurance issue without car adaptions.Appreciate any feedback from community on any aspect including any tips on things to aid recovery.They are keeping me in hospital for first cycle of chemo so no hassles with journeys home Also live in 2 story house not adapted for disabled.Suspect they will want bed back after that.Talked about residential rehab near home which is 10 miles from hospital.Prefer something like that than parked at home between physio and remaining chemo cycles

Regards

Norm

Edited by member 05 Sep 2021 at 08:15 | Reason: Typos and expansion

User

Posted 05 Sep 2021 at 20:10

Okay - is the physio also requesting that an occupational therapist comes to visit you and also goes out (possibly with the physio) to see your home and see what can be done to make it safe for you when you are ready to go back home? Is there anywhere the bed can go downstairs? Don't give the bed up too easily!

Have you been referred to the local hospice or Macmillan team? They usually have staff or volunteers who can help you with an application for financial help from the government - this is to help you pay for equipment and or home assistance if you need it.

You probably need to concentrate on getting mobile and finding safe ways to live in your own home before you worry about the car.

Some men find cabazitaxel fairly tolerable, particularly if they coped okay with the docetaxel. Don't have any dental work done while you are on the Zometa!!!

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 06 Sep 2021 at 05:05

Hi Lyn,

As always many thanks for your helpful advice.Ironically there are 2 of us opposite in the same ward admitted on the same day going through this process so this is very helpful to us both.Yes the occupatinal therapist person has looked in after being referred by the physio.I offered to do a walk through video by my son so they could see the set up at home However my wife's intuitive reaction was not to until we see how my recovery goes. Although coped well with 5 cycles of radioolgy and at my request only now on one parcetmol because no pain having to start cabiza and acid straight away is not going to help with physio maximum quickest recovery but as only way to slow down cancer Hobson's choice.Will see the consultant tomorrow for the results of all MRI ,CAT and Bone scans as base line for treatment plan. Is asking how bad damage is going to give me a handle on prospcts of full recovery.Prefer to know facts and not have things sugar coated so can plan ahead whilst trying to remain possitive.Does the fact am having acid rather than emergency back surgery indicates less severe end of back damage possibly ? This is all a bit scarey but want to get as fit as possible within hospital invironment to hopefully better cope with chemo etc.Being stuck at home parked in upstairs bedroom between trips back and forth to hospital for chemo and physio would be too depressing until full mobility as possible recovery made .But like any spinal injury may take time days/weeks/months ? When will they be able to give me a honest answer yet albeit with caviats?

Anyway am rambling on a bit now but this has come out of the blue .Am just trying to navigate best way ahead for me which may not be compatible with NHS hospitals brief to get me off their bed blocking list soonest.

Again many thanks for your swift and helpful reply.Will update my progress through this thread which may be of help to others in the community .

Keep safe and best regards

Norm

User

Posted 06 Sep 2021 at 13:20

It is true that the hospital may operate to stabilise a crumbling spine or other major bones such as hip, whereas Zometa helps to strengthen the affected bones over a period of time. Whether you are being given Zometa rather than surgery indicates less of a problem is debatable as you have already had SCC and are not mobile - it is worth asking the doctor why they have chosen one over the other.

We have had members who never walked again following SCC, and others who have recovered ... if not fully, at least enough to be able to get around. The fact that physio is saying it is too soon to tell is perhaps a good sign that the damage wasn't so catastrophic that there is no chance of recovery.

Get that PIP / disability living allowance or attendance allowance application in!

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 06 Sep 2021 at 13:50

Hi Lyn,

Many thanks for that.Dr visited earlier and said choice of acid or surgery is dictated by evaluation of individual patients scans.What surprises me that this has happened now with having scans end of 2020 and given ok and PSA only going up to 17 albeit have had number of urine infections which can apparently affect readings.

The occupancial health have also looked in to say thinking about moving me to specialist rehab unit until start cabz in 2 weeks as my initial progress is "encouraging" However with the first acid injection soon side effects can be bad and monitoring would be good

Moreover leaflet given for radiology after zaps says side effects may become worse for 2 weeks after zaps .My inclination is to try to hang in here as will be given twice daily physio which is excellent

Regards

Norm

Edited by member 06 Sep 2021 at 14:06 | Reason: Typos

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