Chiari, Syringomyelia and ADHD

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I am an adult with ADHD, 15 months ago I had decompression surgery as I had a syrinx almost the full length of my spine and Chiari malformation. The syrinx has reduced massively but is still large. I have had many symptoms following surgery but am wanting to know if any chiari patients also have experience with ADHD as alot of the cognitive issues I am having now are similar to ADHD like lack of concentration and taking in information. From what I can find there is no official info about this so I was hoping to hear from anyone who has a personal experience of this. I don't know if I can expect to return to normal as alot of the cognitive symptoms I already had but on a much smaller scale. Any info greatly appreciated..

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  • Posted

    Hi I just found your message it was 7 monhts ago, I just wondering if you are OK now..can you share your present situation please
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    • Posted

      Hi thanks for your message- to be honest I'm struggling quite alot at the moment. I am usually quite reluctant to add my experiences to this site as I don't want to influence other patients by being negative but the truth is, I am significantly worse than I was before surgery. I should mention that I was extremely lucky to have very minor symptoms of just pain and numbness in my left arm, and eventually weakness and at the time I was very fit and healthy and working as a fitness instructor, so I struggle to appreciate the benefits of the surgery due to the comparison.

      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.

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  • Posted

    Dear Nihilo,

    I am sorry to hear about your symptom, thank you ever so much for sharing this, but dont give up please..the first instant you need to contact your gp..every one in the UK must register with their own gp..write to is the duty of the health professional to look after you''QUALITY OF LIFE'' have a look at your area..who is the head of the CCG , google it Clinical Commisioning Group and copy to your PALS if need be to your MP as well, express it to them..that you would like to have a normal life..having this type of pain is try to help the government to reduce unemployment..(you might not be able to work in the end...jut like I do..I have to gie up my I am no longer able to drive...nor walk properly)..please keep writing..finding out who is the chief executive of your hospital ..called Brian & Spine Organisation..there is a LIST of the surgeon in your area who express their interest in CM, contact Annconroy trust they will be able to help you - the nurse there can give you advice and very helpful..they give you recommendation as well who will be the the surgeon in your area..please.;;please do not give is your one will help you..the gps and neurologists not ignoring you..they just dont understand them self..get the print out from you tube if you them when you next see any you getting worse..there are few solicitors as well would like to take your case if they are negligancce and it is  must get this sorted...I am with you all the way..starting tomorrow..put a list .., start phoning...I was diagnose since 2014.each week I wrote a letter..without fail..they have done GON (blocked on my head), Lumberred puntured..medication after medication..none of them working...hence I asked anyone who had surgery..if it is worth while...whether I should put up with this unberable pain I do not know whether my condition is going to get worse without the surgery or not...but you have to get yours better..please leet me know how you are getting on ok? What medication did they giving you..have you tried Topiramate?

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    • Posted

      Hi, thank you so much for your reply. You make alot of good points that make me feel like I need to re-ignite my motivation some how. I would tell other people with CM not to be afraid to be more assertive with doctors, especially if you feel like they don't have a good understanding of the condition or even the patient.

      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?

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  • Posted

    Well, Topiramate suppose to work on all around ;;menierre disease and epilepsy, it take the headache, the dizziness, if deluxitine wont work ask for mirtazipine as its work on both nerve deluxitine only SSRI, sometime when patient don't get on with SSRI they give mirtzipine but deluxitine is quite a clean SSRI compare with others. Try to drink plenty of water min. 2lts a day act as our body need lots of water mostly when you take so much drugs..see our Health sytem is very good even the NICE guide line always advise the GP to ask the patients to first change their life style by eating properly, stop smoking, consume less alchohol and at try doing 20/30 minutes exercise - (I am struggling-but I am make sure I do 20 minutes each day) - try not to eat any fried food, less wheat, more protein (eggs, fish, meat (not welldone), pulses, fruit, veg. Believe me this days gps trying their best to provide the best care for their patients, but they also have a pressure of providing the admin.stuff due to the change of this NHs sytem (they abolished PCT) now they had CCG, that is why I said to you, you need to find out who is you CCG in your are - google it, or ask your GP, when you go and see your gp again..explain it properly how do you feel,  and empatise them that they might not have that much understanding about your condition but say to them this is really effecting your QOL (Quality of Life) - If I were you - I will go to the A&E if you got another attack, do not let them discharge you until you feel is their role to treat the patient..the problem is..patients feel uneasy to stay at the hospital but you have to remember is not free we have paid our tax (NI) so you have the right to be treated.. PLEASE THINK about your HEALTH as if you are healthy you can do more not only for yourself but also for your community.

    AS for me..I am struggling each day..but I try to walk..I gave up my job last year..I am seeing Neuro Surgeon tomorrow at Southamton Hospital - I am not sure - what he is saying - What do you think - did you glad you had operation?, I just joined today another CM support group called Ben ...something (its in State again) just to find out from others what their experience in regard our according to them..after operation it will take between 6 - 9 months before they healed properly.. so did you glad you have done the operation or you have wished that you have not done it?..I think once everything is should be others..but make must insist not to go home after going to A&E make sure they amend it..OK? but please let me know how are you getting on..I will update you how my visit getting on.

    Please..look after yourself..keep up do not give up ..

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    • Posted

      Hi. Thank you once again for taking the time to help me, you have given me lots to consider and plenty of options on how to move forward. I really appreciate 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


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  • Posted

    Hi Nihilo,

    It is nice to know, my health is just the same as back ground is science, I also learned nutrition so I have paramount of knowledge and I have a healthy life style just like you are until I suffer from this CM, I suppose you have to except your condition, you are not the same as you are before you have this condition, as for CM, even after the OP there is no cure but it would be better in term of headache - dizziness, perhaps GOD would like you to do different thing, every one have a purpose in life you don't be down, thing to enjoy each day no matter how difficult sometime, if you look in the news, at the people in Syria,how they risk their life to come to UK even they drawn and died, so we have to thank GOD that there are an excellent health care here. Well I went to see Mr Mathad today from Southampton Hospital, he was very honest, he asked me about my symptom etc..what I expect from the surgery..because there is no treatment ..and also the risk of the treatment..he was very blunt and also quite scary..the lenght of the operation..the result..I could be comeback hopefully not, the success rate..etc..etc..and also advised me do not hope that there is always smoothly..because sometime there is some complication..ya..diya..di ..ya..but he also asked me to get 2nd or 3rd opinion..he also said he does not mind if I do not come back to him, he also recommended me to go to the best CM surgeon (They have the best success rate and had done so many CM surgery they are  Birmingham/Nottingham) so I was really thanked him for his professional, ethical and could do the same, why don't you ask your gp to refer you to these two his name is Mr Graham Flint or you ask to refer to Mr Aspel of Nottingham both of them are brilliant...So that is what I am going to do, tomorrow I am going to go to my go and ask them to refer me to both of them to see is worth while at the end of the health is most important - I have paid my contribution throughout my life so....I don't owe anything to anyone..its time to get my insurance back because if I am healthy I will be able to work again and start paying contribution, but I do not expect that I will be able to work like I use to be gathering from talking to some of post OP CM patients their life are totally  change no..some of them can no longer work full time..some other change their career you are not alone...but s time goes by you will get better... I will keep update you..

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    • Posted

      Hi. It's good to hear that you are getting the information you need to make the best decision, I am glad you might be seeing a different surgeon in Nottingham/Birmingham. It will hopefully reassure you that you are getting the best care possible.

      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.


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  • Posted

    Hi NIhilo,

    I write to my GP last Friday, I followed it up today (Wednesday) as gp are often busy unless you are on the ball they forget sometime (not that they do it deliberately) we always have to think positive..don't think that other people negleting our health is our responsibility..waht is important to us..might not be that important for others (as they have other priority as well) you have to take control of your life (I always write it down daily what I NEED to do..)some time I could not cross what I wrote on that day and have to bring that forward for the next day..and its good because its make you focus..well. my gp have writen referrel today (LOL..due to my call) I spoke to Mr Graham Flint's PA as well, she said that the soonest that she get my GP's referral letter she will book appointment for me and she reckon I will be sseen by Mr Flint in November - but when I have a chat with her..she really reassured me that he was the best of the best in the why don't you..get 2nd opinion..apparently he was the one who setting up Ann Conroy assertive to your GP..say that it is effecting your QOL..and you really have have enough dealing with your pain.. (I had..and  am not as bad as you are....) just remember if you ever feel fed up..and..down..I am only here by your side...

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    • Posted

      Thank you I really appreciate you taking the time to help me.

      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 :-)

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  • Posted

    Dear Nihilo,

    I am glad I ll be able to help you in away how all my friends are, the problem is we look ok..just llike you are I used to be a manager and have more than 30 team..they thought that I was quite a firm one..I just couldn't stand when people ill, because for me headache, fibromyalgia, cold and flue, cough, nothing compare with what we I was right..I was not being strict..perhaps I expect myself too much..and I was expected people to do a likewise only now I realised that every one immunity and strenght and attitude are different..but in life I do believe thing become is if you act/think negative it will come true negatively but if you think/act positive your life will be filled with positive outcome in term of Mr Flint of Elisabeth Hospital in Edgbaston do not be discourage do not write directly to them you can contact his PA (Michelle/Emily) express what you would like to do..then speak to  your GP. Yes , mostly after your operation..that even most important..because you would like to have second opinion now as you have been discharged, that is giving more reason to do so..please do not be assertive it is your heath you are talking about...and our condition is very is not cancer or tumor.where they get use to operate and done is a very very rare case..even the first surgeon  who I saw told me that its very rarely the neuro surgeon would like to do this type of task..please have it view by Mr Flint..he is the best one in the UK..if you get you GP to refer you he will be able to see within 6 - 7 weeks after the letter, he does not see private patient, as i ASKED.

    Remeber if you are is effecting your mind as well then you become be patience..think of NO ! (YOU) like today I can't wake up at all..I don't know I just lie down up to 10am..when I try to stand my head was really painful..then  I just sit in  the lounge and have not moved I feel a bit better now when I write this to you..I am still on my PJ and dressing gown..I have been just drinking warm water mix with fresh ginger and lemon..don't feel like eating anything..just walking around my dining I checked on my diary..I could not understand..I do not do anything different and body for some reason just really so weak..and I just said to my self and lite my candle and pray thanks GOD that perhaps He wanting me to take a rest and stopping me to keep studying and give my brain and body a rest...and thing is must be for a matter whether we have a bad or good day.

    So, always chin up my friend..they will be a light at the end of this tunnel...

    Let me know how are you getting on with your GP ok?

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