Chiari, Syringomyelia and ADHD

10 months after surgery I became very depressed as I feel like my life, my personality and my mind are all stuck on pause whilst I wait to improve. This was catalysed by the arrival of new symptoms such as wide spread pain throughout all 4 limbs (mainly the left side), which I felt was significant as I was always told the surgery is to stop me getting worse, however, the pain specialists and neurologists I have seen just added it to the bottom of the list and have never offered any explaination as to why this is.

Any symptom I mention to my GP is immediately dismissed as a possible side affect of the medication, despite me repeatedly reminding him that nearly all of my symptoms were present the moment I awoke from surgery, and have only gotten worse since then. This includes ringing, squeaking and even loud popping sounds in my ears, head and neck. It is physically bearable but the constant fluctuation in these types of symptoms means I never get a chance to adjust to my new body/mind as my perception of the world around me changes so much. This has caused me to be confused about reality, I am sometimes convinced I am dreaming, or not real.

I still shake and twitch very noticably, struggle to find the right words and occassionally slur a bit. I vomit often and can't tell if I need the toilet or not. This knocks my confidence because I'm always being told I look well, so I worry that strangers think I'm drunk when I go into shops etc.

I read a copy of a letter from my surgeon to the neurologist which mentioned my c1 arch was removed (I didn't know this) and that there is a pseudomeningocele present on the back of my head, so I am not allowed the nerve injections I was offered by the pain clinic. This has meant that any specialist I have seen in the last 6months have refused to offer any treatment or even infomation until a more up to date scan has been done. I had the scan 5 weeks ago and have been trying to chase the results but no one has been able to tell me who ordered the scan or even which hospital I should be contacting. I saw a neurologist from Salford Royal Hospital at Withington Hospital at the request of Wythenshawe Hospital so there is generally alot of confusion and I don't know who my doctor is. I don't even know what surgery I have had or what chiari type I am.

It looks like I won't get the results of my MRI until my next appointment in 5 weeks, this appointment was originally in July but it has been cancelled twice. I am frustrated as I am aware that I may need surgery to drain the fluid, and if I do, I have to wait 5weeks before I see the neurologist who would have to refer me. This is why I ring them all the time about my scan, if I have to see a surgeon, I want to  start the waiting process now rather than in 5 weeks.

I am sure you are all aware that this is just a sample of some of the symptoms I struggle with, as I know alot of people here have there own endless list. This means you never get a good day, because if I have a good day with the head pain, I rarely notice as I will be having a bad day with limb pain or sickness.

Sorry for the rant, I have been waiting to contact anyone on here as I wanted to have something possitive to add before I moan about everything else. I still believe things will improve, but with so little information, I don't know what this might look like.

I appreciate all the messages on this site from other people, we all have quite different experiences to one another but a mutual understanding of how isolating and confusing it all is, so thank you for contacting me and please do so again if you think we can help each other. I'd love to be able to help someone else with similar issues. Thanks again.

I currently take paracetemol and tramadol for pain, which have become less effective over time. I do still get some relief from them though which is why I still take them. I take cyclizine for sickness and sometimes buccastem. I usually take anti sickness about 3/4 out of 7 days. I take duloxetine but have not noticed any effect whatsoever, good or bad. I also take methylphenidate for ADHD which is helpful.

I have had bad reactions to amitryptiline, gabapentin, pregablin and carbamezapine such as extreme dizzyness and all over rash so I have had to discontinue with them. I have tried chilli creams and lidocaine patches. The pain clinic have mentioned lidocaine infusions, do you know anything about this, or if people have found it helpful?

What is Topiramate? Do you think it is worth discussing with my GP?

I don't like to think I have given up, but I have worn myself out trying to be heard and worrying about new symptoms so have given up out of exhaustion. I do think it's time to try again though, which is why I am seeking more knowledge around CM and Syringomyelia. Thank you for all your advice, I will certainly try writing to a few people and also contact the Ann Conway trust.

How about yourself, are you saying that you have had surgery or that you are considering it?

As for the surgery, mine was a decompression that included removal of the lower part of the occipital bone, the c1 arch and opening and patching the dura. I understand that there are options to the surgeon, some don't remove any neck bone, some don't open the dura, if they do there are further options as to how they close it again. I mentioned before that I am not fully aware of what my own surgery entailed, I am in the process of finding out. My advice is to ask as much as you can before hand, don't be afraid to let them know you have done alot of research yourself.

One question I always have in regards to any treatment is "what will happen if i don't?".

I was never offered a choice because the surgeon said if I didn't have surgery then I would become quadraplegic, he said he couldn't understand how I was still able to walk. He admitted that before seeing my scan, he always thought that the size of the syrinx dictated the severity of the symptoms. He said the syrinx was "as extensive as they can get" but I presented with the most "trivial" symptoms he's ever seen. This is yet further evidence that even the experts know very little about the condition.

Because I was a fitness professional, I am well practised at using diet, water and exercise in order to give your body the best chance to heal. I was extremely active and strong. This means that I have no comparison to appreciate the benefits of the surgery. From my perspective, I was very healthy, had surgery and became very ill. This makes it seem like surgery was not a good idea. I often catch myself blaming the surgery as the turning point in my life, but I remind myself that I was already ill, even if I didn't suffer much with it. It is easy to ignore the fact that without the surgery, things would have been very much worse. Even now most of the syrinx has drained, it has caused damage to my spinal cord. I have been very lucky and have seemingly had a very easy time of it compared to others who struggle for years with incorrect diagnoses. I try and remind myself of this alot, otherwise I would only see the surgery as a bad thing.

I would say to anyone considering surgery to be prepared for a long recovery. Most doctors tell me different time scales, actually they keep moving the goal posts! I am currently told the average recovery time is 2 years. I would agree that a minimum of two years is much more realistic.

One of the hardest things to get across is the fact that everything is different after surgery, my hearing, vision, movements and thoughts. It's as if I spent 27 years living one way, then woke up somewhere completely different in someone elses body! My previous level of strength meant that I was able to do alot of things that others struggle with, such as standing/sitting smoothly to avoid straining and pain.

So in all honesty, no I'm not glad I had the op but I do still think it was the right decision for me!

I would be more than happy to discuss any thoughts or questions you have about surgery, no matter how big or small, especially because the longer the list of symptoms the less you get to discuss with the doctors. I can only give my opinion based on my own experience, but hopefully I could help, even if it's just to listen.

Take care, thanks again

I am going to talk to my GP about what you suggested, I would like someone to look at all the aspects of my treatment in order to stop this lack of communication between departments.

Please keep me updated on your progress and I will do the same. I wish you all the best and hope you keep up your strong attitude.

Thanks

I never try to think of myself as better or worse than someone else because I think it is very subjective. I can tolerate very severe headaches because I have to, but if someone else suddenly got them, they would be worried as to why which means they would suffer more. I used to get impatient when people moan about having a cold or a headache without considering what I put up with, but now i really believe that if I have a terrible headache but feel reasonably relaxed and someone else gets a splinter and starts stressing, then they are actually worse than me at that time! I know it sounds weird but after everything I feel that one of the worst apspects of pain is the distress that comes with it. This helps me be more tolerant of people who have no understanding of CM, because I hated the fact that I was resenting people for simply not understanding (and how could they?!).

I will talk to my GP about Mr Flint but I'm unsure if this is the right thing for me, as I have had surgery. My surgeon was great, I was very happy with every appointment we had, but now I have been discharged from neurosurgery and am told if there is nothing surgical to do, then a surgeon is not the right person to see. I agree this makes sense but I miss the reassurance that the person in charge knew what they were talking about! He kindly offered to see me again if I wanted, so I think I will take a leaf out of your book and write him a letter.

I used to write my daily goals down and will do again as I did find it helpful, especially because my ADHD makes it a bit harder to organise my time. My new plan is to set a date every month to assess myself! I will do this so that it will stop my just bobbing along on auto-pilot and give me the motivation every few weeks to ask myself "What has been working? What hasn't been working?" and most importantly "What is my new plan to try moving forward". I will try and do this even if it is a minor thing, such as trying to drink more water, or changing the times I take medication.

I know I have it in me to do this, but I kind of gave up out of exhaustion. Thank you so much for inspiring me to try again and keep a possitive attitude. It has helped me more than any pain treatment I have had, so please take alot of pride in being able to do that, because being able to help someone else whilst battling to help yourself is very impressive. Your strong attitude is your greatest tool to cope with what you are going through. I hope I can return the favour if you ever feel worn down and need a boost :-)