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Hi! The pregnancy went well considering everything. The permit came through as well. Wishing you a splendid day!

​@@urbanyolkcan you please help with the details of the law firm you used? Thanks and Congratulations on the permit

I heard CBD oil helps.

What is fullform of CBD Oil

I'm so glad to hear that you were able to find something good in these videos. It is tough to make them consistently so I just do what I can when I feel like I am up to it. You are the first person to have a similar experience that has contacted me. I honestly just wanted to share some information about it and soon realised how many people out there just wanted to feel connected. I'm alwaya happy to connect. Just send me an email whenever you have the energy. I'd love to know more about you. Keep well and thank you for the comment, it is much appreciated.

Thank you! Honestly, so far the experience for pain management has not been great. I will make more videos as I experience more of what Italy has to offer.

@@urbanyolk man that is tough as nails, I know this is probably something you've definitely done but as silly as it is, has massaging helped? Silly I know but I guess depending on how bad your muscular pain gets I think massaging certain parts can help, even more so if your partner is able to help. Stuff is hard no matter where you turn depending on the situation. Here's hoping you'll feel better. I bet even making videos can be tough too, keep doing what ya can!

@@PringleTheOne it does help to a certain extent. The problem with it is that it can aggravate the pain and muscular spasms as well. It is a little unpredictable. For now hot showers are my best option when I feel up to it. Some exercise typically helps too. Keeping up the strength but with the pregnancy it is much harder to do. May I ask, do you also live in Italy?

They unfortunately do not know how to assist me during pregnancy to manage the pain. They leave it up to me quite a bit. They do try though. And thank you!

It is a type of syrinx from what I understand. Typically associated with a dilated central canal.

@@urbanyolk is that I called myself syrigomylia pateint or not😢😢

@@mograkhan-bt2zk it is hard to say. It would appear to be a separate issue from syringomyelia. I would speak to your doctor to find out more or get a second opinion of you are able.

@@urbanyolk thanks a lot for quick answer my Dr say me it's a narrowing of central canal it's not a true syrinx becouse I am ex medical students I want to know your opinion also that's why I ask you thanks ans me from bottem of my heart

Goodness, quite the find. I'm glad that they were able to find these issues. Helps to know as much as possible o be address things early on. I hope yoir treatment is going well!

Congratulations! Wishing you all the best for the birth. I am planning on having a c section as well. The doctors here told me that we will discuss it in my next appointment.

Hi! There have been some success stories for syringomyelia. However, they are not mainstream yet. You will need to do a fair amount of research before making any decisions. Most people who do surgery also have chiari malformation and as such theu have decompression surgery. Some people have tethered cord and other similar issues which dictate the surgical options available. The only on available for just syringomyelia is in Spain and Italy. These are institutions performing filum surgery. They both perform it slightly differently. The theory, as far as I understand, is that the filum is too tight and so they cut it. Success seems to be varied. It is relatively new which makes it harder to understand. Most neurosurgeons seem to advise against it. I'm not sure on it yet and will spend the next year finding out more. There are a number of groups on Facebook with gopd information for syringomyelia. One is a UK group specifically discussing filum surgery. Others are mpre like support groups. It can get a little sad but there is good information and people who can answer more complicated questions.

@@urbanyolk thank you so much for your reply and advice. I have had different advice from two neurologist. One thinks it's not the cause of the pain and the other does. I'm worried as it gets bigger will the pain get worse and it's already so so bad. I don't know what I did to deserve this but it's so cruel 😭 I think I'll definitely follow some FB pages for some answers 👍❤️

@@daniellekathleen5425 no problem at all. I'm happy to help where I am able. The disease is different for everyone. I often suggest finding stability to people. The pain has never truly gotten better for me but my routine and lifestyle make it much easier to manage. The fact is that symptoms can worsen even if the syrinx doesn't grow and sometimes there are other underlying issues that are harder to discover. This is a disease that requires you to be the advocate and make the decisions for your care. I have seen many doctors, some of whom couldn't spell syringomyelia. But the giod news is that there is a large community in the world willing to take the time to help. It is a lot to take in right now. It will be for a few years unfortunately. Just know that leading a good life with this disease is possible and many have been able to find just the right balance. You've got this!

@@urbanyolk I was such an active and happy person and it's so hard to adjust. The thought of peeing my pants or not being able to walk terrifies me. I will probably never come to terms with it but I'm so grateful for people like u that make me feel better...even if its just for a minute. Best of luck to u too....❤️

Sure, yeah. I struggle with medication as a main form of pain management. I have taken a lot for many years and over time I started to become tolerant to the ones that did work. The ones that didn't caused adverse reactions. Eventually it got to the point where the medication I was on caused severe symptoms themselves. Including losing my memory, insomnia, intensified brain fog and so on. It eventually became a bit of an addiction as well. I couldn't work and just showing up for the day was difficult so I changed my ways. I'm much better now. At the moment things are difficult which is affecting my mood. But now after years of recovery from the medication I do take medication when I need it. So, I'm not opposed to it by any means. I just found a balance that works better for me.

I hope you're able to get all the support!

I have found cannabis to be far more effective at helping with daily pain as it has far fewer immediate side effects for me. Not everyone has the same experience and it really does depend on your reaction to the product. Also the legality will influence your accessibility. Painkillers in pill form can have very high side effects which can make it harder to maintain a good routine and standard. I was on many painkillers, anti inflammatories, stomach medication and topped with nasal sprays and cortisone. All of these had side effects that needed to be managed by other medication. My stomach was a mess and struggled to eat. I was constantly drowsy and had even more fatigue. Just to outline some of the issues I experienced. My solution is not a cookie cutter recipe that will work for everyone. Each of us need to evaluate what the best method is for ourselves. I do believe that painkillers have a place and should be used when needed. However, for daily use on a permanent basis has the potential to cause a decent amount of harm. I have found a good balance with only needing painkillers at times when I cannot manage at all. The cannabis makes a huge difference in my ability to manage the daily pain and it helps my appetite a great deal. Though I find straight CBD does nothing for my pain. A small amount of thc is needed to work without getting one totally high. That defeats the whole point.

​@@urbanyolkthank you for this detailed reply. Very helpful.

Hi! Apologies for the late reply. From what I understand, once you have your residency card your husband can come through on a tourist visa and then apply to the questura (police headquarters) of Florence for family cohesion. The process should in theory take 6 months but as we have seen with my husband, we are almost one year into the process and still waiting on his permit. It can be a time consuming process and you need to be able to take time to go to the questura to follow up on the visa. You will need to provide a maintenance letter, showing that you are willing to pay for any costs related to your husband. This includes medical costs. You will also need to provide 6 months banks statements to show that you have enough money. If they feel that you have adequate savings they will grant either a 2 year permit or a 5 year permit. Depending on the length of your master's program as well. However, this is not necessarily a sure thing as your stay would be temporary by default. Another option would be to look at the visa for accompanying family members (“familiari al seguito”). This might be a better option. A student my apply from their home country through the embassy to get permission for the spouse to accompany them to Italy and stay for the duration of the visa. You still have to prove that you have adequate funds and housing along with other documents such as marriage certificate, nulla osta and so on. I would suggest going to the Italian Embassy closest to you and ask about the familiari al seguito visa for your husband, if it is possible. This way you might be able to get him to come over with you with a permit in hand. The University of Florence may be able to offer some information in this regard as well. Essentially ask the embassy and the university for information as they will likely have the best information. With your time frame, I would go as soon as you are able to and find out what you can from the embassy. I am not an immigration expert by any means but I have done a fair amount of reading and hope that this information will help you find the path that will work best for you.

I'm sorry to hear that you have to deal with other conditions on top of sm. It is already a troublesome disease. I hope you are able to find stability.

Forgot to mention, syrinx runs from chiari to s1

Goodness... That is quite severe. That truly sucks man. I hope ypi get results you can work with to create a treatment plan. Wishing you all the best in this time!