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AVM Survivors Network

Let's reach out with a welcome and some support for Tariq

#1

Seenie here from Moderator Support. I received a message today from @Tariq, whose mother was diagnosed with a spinal AVM. He is desperate for support and advice for how he can best help her recover.

To give him a bit of time to figure out how to make things work here on the forum, I offered to post his profile story to introduce him to you:

Problem starting with urinal infection, she often been in troubled with it. Then we met a senior Urologist doctor in my city to cure of urinal infection but in my view he is the world worsen doctor because my mother always used to say him about symptoms which she felt which is: numbness, tingling, heavy leg, weakness on leg, constipation etc. but he didn’t bothered and just continued with urninal infection medicine over a year which never been cured. These all are very clear and visible symptoms which easily can be recognize by any doctor. He never suggested for a Neruosurgeon and treating his own expriement later which become fatal. However, I remember the day when she fell down. On 10th October 2018 morning she loosed movement, sensation of lower limbs due to spinal AVM attack. Afterthat, she undergone with surgery by an expert Neurosurgeon, as per doctor surgery went well and it takes healthy time to recover the damages. Current Situation - Gradually, she is getting sensation and movement but she is very irritated as loss of control of the urinary bladder and bowel. Can someone help me how we can overcome from it. I want to see her again back to nornal. Need your help and advice.

I have no any other story to share except my mother AVM’s. Verily, I encountered with such rare illness first time in my life which shattered me internaly to think how could this happened with my mother.

What a lucky woman Tariq’s mother is to have a son who wants to help her so much . What support can we offer him?

Seenie from Moderator Support

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#2

Hi @Tariq

It’s good to have you join our community! Your mum has a great son! Much of the experience that your mum is going through is common to those members in our @Spinal community, so I hope some of those will be able to help you in offering their experience, how long it takes to get better and that sort of thing. My understanding of spinal AVMs is that it can take a very long time to get better, not everyone gets better, to be honest, and not all aspects get better.

We do, however, have quite a large spinal community, so I have added you to that group. We also have a category for Spinal members to talk about how they are doing here:

https://www.avmsurvivors.org/c/types-of-avms/spinal-avm

So do have a look through that category for people’s stories – there may be much useful information to read.

It sounds like your mum is doing well, getting sensation return. I hope she carries on getting well, consistently.

Very best wishes,

Richard

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#3

Thank you so much Richard.

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#4

Hello Tariq,

I’m glad you found our group. I hope you will find this forum a great source of support and information to help you cope with what your Mother and you are currently experiencing.

The first thing you need to understand is – there is no magical formula. Everyone is different during the recovery phase post medical intervention. It might not seem like it but the most difficult part is done. Your Mother has been diagnosed and she has had the medical intervention needed to obliterate the AVM causing the progression of symptoms (fingers crossed).

Now … what can you do to help? Well I’m glad you asked! Learn everything thing you can about your Mother’s AVM. What it was, where it was located, what was impacted as a result, etc. Read everybody’s stories here. Read the medical studies published online. Read every minute detail of your Mother’s medical reports (if she doesn’t have them – get them). Become as completely informed as you possibly can.

Then step back. Pretend all that information is just sitting there swirling around in a sphere in front of you. A pattern will emerge. My point is, don’t focus on the particulars of each bit of information and try to relate it directly to your Mother’s situation (it’ll drive you crazy) but instead look at the totality of what you have learned to better understand that what your Mother is feeling and how she progresses day to day will be in flux – BUT that is now NORMAL and OKAY!!!. AND she (and you) need to know she is not alone and there are others going through similar struggles every day.

I am 6 months post-surgery and am now walking with a walker. I can handle short distances with a cane and walk around my house without a cane as long as there is a wall or furniture nearby to help with my balance. I have to self-catheterize a minimum of 4 times a day or I too will suffer a Urinary Tract Infection. I’ve learned not to track my “progress” on a daily basis, or even a weekly basis. But month to month I can say there has been no regression and a little improvement. However, after six months compared to where I was prior to surgery I can see there has been a marked improvement. The nerve pain, neuropathy, spasticity etc. are still prevalent from my waist down but there has been some slight improvement. It will take time. How long? I don’t ask that question anymore. I just stay positive. Ask me again in six months. It really isn’t that long of a time after all.

There is nothing she (or you) could have done to prevent the AVM from occurring. It’s easy to blame her Doctor for not diagnosing her condition earlier. But that will just take you to a dark place you don’t need to be – trust me on that! Your Mother doesn’t need to hear negativity. You have to be a beacon of hope and positivity. Is it going to be tough? Probably. But that’s why we are here. Reach out whenever you feel the need.

Brent

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#5

Brent,

Sorry for delay in anknowleding your message. I was away. Thank you so much as you have written a lot for me.

After reading, there is no word that can contain all that I feeling for you.

I will write soon after getting all relevant information. Please accept my delay and stay connected.

Thanks

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#6

Hey Tariq,
Welcome, I’m pleased you found us. There’s a lot of good people here with a lot of good first hand knowledge. And as for Brent’s information, I could not agree more.
Some of his points I can only reinforce, they are 100% correct.
Pre neurosurgery I had plans. I was going to have the operation, give it a month and then get back to my normal life. Post neurosurgery… …well, that didn’t happen. I was told by the medicos to keep a ‘pain diary’ to track my progression, which I did. The problem for me was there was no progression, it served as a reminder of how bad things were, which was not good for my psychological wellbeing. I have now learnt this thing called ‘recovery’ is a L O N G journey. It’s a marathon, not a sprint. I was trying to sprint through it and fried myself as a result. Some abilities I have regained, some I have not and that is frustrating to say the least. For a while I used to beat myself up for not reaching the goals I had set myself. I can look back now and see that those goals were unreasonable and unattainable and this only added to my frustration. Acceptance was my nemesis, I didn’t want to accept THIS. The reality was I had no choice.
Again as Brent has stated keep yourself informed BUT do not be drawing any direct parallels between your mother’s situation and others. No two neurosurgeries are exactly the same and nor are the results. I have now had a few neurosurgeries (6 so far) and no two have had the same results nor recoveries. Many of us have that question of ‘How long?’ and my answer now is ‘How long is a piece of string?’ there are simply too many variables to answer that question exactly. I have good days where I feel I could conquer the world, but then I have bad days where I hibernate in a darkened room. It’s all a case of management and that management varies from day to day, it can even vary from hour to hour.

Tariq, your mother is lucky to have you to support her, just as I am lucky to have my wife who supports me. But in saying that you must also look after yourself. If you fry yourself you will be of very little support for your mother. So you must also balance things out for yourself too. Have some time for you in amongst all of this.

Merl from the Moderator Support Team

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#7

This is important. I completely concur.

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#8

Hi Tariq,

I’m so sorry to hear about what your mom has been through. She is so lucky to have you caring for her. I was diagnosed with spinal AVM summer 2018. I think for many individuals with our symptoms, it takes a long time to finally get correct diagnoses. Which is so frustrating. After my surgery, my neurosurgeon said to expect the most recovery in terms of muscle strength. He said next to improve would probably be balance, then bowel/ bladder issues would be the hardest to get back to normal. I think it’s because of something related to structure of nerve fibers and their positioning with regard to spinal cord but I’m not sure. I didn’t like wearing incontinence underwear in public at first but I’ve had enough accidents that I really appreciate having them and I don’t have any problems anymore wearing them. I also saw a gyno-urologist regarding my bladder leaks but there’s not much they can do I think besides hope that my symptoms improve. Since I’m basically emptying my bladder every time I pee, I don’t have to self-catheterize. At home I try not to go everytime I feel the urge; instead hold it for certain period like every 2 hours. That way there is more liquid in my bladder and more likely the bladder will fully empty, which reduces likelihood of UTI. Still, I frequently get UTIs so I drink cranberry tea every day. My bowel issues have improved a lot. I used to have bad constipation (I eat tons of vegetables and if that doesnt work I take magnesium pills) and sometimes I had bowel incontinence accidents but that hasn’t happened in awhile. I also try to avoid caffeine and alcohol and foods that might irritate bladder (citrus, tomato). I also Google and watch videos online about “spinal cord injury” to get ideas about how to deal with symptoms. Recovery is slow but the most important thing is to keep a positive attitude and be gentle on the recovery process itself.

Best wishes to you and your mom and family,
Stephanie

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#9

My spinal AVM was diagnosed and intervened in July 2012
Doctors told me that my future was bleak at best . I left the
hospital in October with very similar symptoms Tariq .
I now have some feeling in my legs and have B&B control,
and walking . My story is very long and dramatic , I wont bore
you with details , but I will tell you this . Don’t ever give up .
Get blood pumping no matter how painful it may be . PT was
a joke . I actually had a friend that pumped my legs 3 times
per day for 1 hour each session . Gradually the feeling came
back and I took my first step in February and I was walking
unassisted by May . I still struggle but notice small improvements
monthly . Good luck to you Tariq , and remember…Don’t
believe naysayers and never ever give up , EVER

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#10

I was there Stephanie and am here to tell you that what helped me the most
was blood flow . Get yourself on an exercise bike if you can . If not , have somebody pump your legs like there’s no tomorrow . Dismiss any negative
diagnosis as doctors are just guessing . Every AVM is different …Do Not Give In .

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#11

Mega Dittos

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#12

Hi my name is Roxanne welcome to the group

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