HI Allie: Her recovery has been a miracle. She is in school (3rd grade). She is 90% back to herself from a motor standpoint. She still has minor balance and coordination issues, appears clumsy and walks into things. Academically she is a little slower and needs more time to complete tasks. We are having problems with sustaining attention and there are elements of depression and lack of desire to socialize. All of these are a blessing compared to what could have been much worse and we are helping her every day and grateful to god for saving our child.
I would like to thank you very much once again for all of your messages of comfort. Hearing your stories and hints have really helped me to either boost our hopes up or understand better everything she is passing through. Thank you! . And I am really sorry for not answering you sooner, these months have been completely upside down as you can imagine.
I’d like to give you a bit of an update on her status. Hopefully she will be able to come here and tell everything by herself soon, but for now, I’m writing you and reading your answers to her as well : ) (I did that and she nodded a big “yes!” to many of the things you’ve talked about before :).
She went to an intensive care rehab where she has stayed for unfortunately only ca. two weeks. She was making good progress. Was able to sit longer on the chair, beginning to move her arms and legs better, and her eyes (that became decentralized after the surgery) were slowly getting back to normal - even though her most affected side, the left one, was still quite impaired. She was able to slowly start speaking. At first it was very tough (and she has really little breath and cannot still swallow properly), and her voice is completely changed with other tones, but by the end of a few weeks she was spelling things much better and being able to withstand the speaking-with-a-tracheostomy longer. She has had many anxiety outbreaks in between, and a few rough nights, but with love (and sometimes a few meds) we were able to overcome them.
She was then sent back to the hospital for she was presenting signs (headaches and vomiting) of hydrocephalus, which was confirmed. But due to the huge damage on her cerebellum, she developed a weird type of hydrocephalus in the area. The doctors then spent 3 weeks trying to figure out and making tests to see wether she would indeed profit from having a VP shunt inserted to manage it. Due to the strange type of hydrocephalus she developed, the surgery was not going to be so simple.
On last Friday (roughly almost 5 weeks after she was readmitted in the hospital, were she receives only partial rehab) she made the VP Shunt surgery, which was a success. On the day after the surgery, she woke up for about 1h and showed signs of incredible improvement on her left side (maybe because her remaining Cerebellum was then decompressed). But shortly after, she developed once again a hydrocephalus in a Ventricle on the top of her head, and needed a 2nd Shunt placement (!!).
She is now presenting signs of hallucinations and paranoia, confusion of thoughts, no sense of orientation and etc, which are all new and have nothing to do with her cerebellar bleeding. The sudden improvement on her left side is apparently gone (and no doctor can explain why!). But the CT scans show that her hydrocephalus is now gone too, and there are not signs of new bleedings and her brain is stable again.
This has been a very long road. It may be that her new clinical signs are linked to the ups and downs of her hydrocephalus during the past weeks, the meds, and the fact that she is lying down on ICU hospital bed for weeks. I am honestly quite afraid, but the doctors say that the exams show nothing new. They keep not wanting to do an MRI scan of her brain even though I ask them to. This is quite frustrating - I wanted to know if the VP shunt surgeries somehow caused more damage to her brain - and even worse, to areas where she originally had absolutely no problem. At least to rule such option out would bring me peace… but it is a tough thing to convince a german doctor to do an exam, apparently. It makes me remember when she had a big headache two years ago, and we have both insisted to 2 doctors we’ve visited to perform an MRI, and they both said there was no reason to for it was probably just a bad migraine (we would back then have been able to get hold of the AVM before it bled causing the huge damage of the moment…).
Hopefully she will soon be back to rehab. My family and I also thought such tense days were over, but it seen that the shadow of her initial AVM bleeding still hunts us all. We hope this was her last one, and now she can come back to her rehab, and soon be able to feel like herself more and more. At the moment I sincerely hope her psychotic state is really only a post-op state and will not stick.
Her family is back in Brazil, and even though we have friends that support us and visit us from time to time, I am the only one with her from 8 to 24h a day. I don’t want to spend any more time talking about my side of things, but this has been a never ending nightmare for me. I wish I could make the world stop for months, until she is better and makes the world spin in the right direction again. But well, that’s life. And I am really happy to be with her all this time, I cherish every second.
Thank you again for all of your support! And I send you my warmest regards to your recovery as well.
It is great to hear from you again and I’m really happy to understand the progress that your wife has made. I’m glad that we helped you both, a little. I’m equally glad that sorting out the intracranial pressure has had such a dramatic effect on her. I watched a film a year or two ago about a gentleman who had had a stroke and it was the proper balance of pressure in his head that set the seed for his remarkable recovery.
I’m sorry to know she is showing the hallucinations and paranoia. I’ve no experience of these things other than a very elderly person with vascular dementia showing hallucinations but I’ve no idea which part of his brain was being affected to induce hallucinations. If I were to be simple and positive about it, it could just be the level of change that she has gone through but I have no idea. I have to agree with you that using some tool to have a look to see if there is anything to see sounds like the right thing to do, so if I were you, I’m sure I would be arguing for an MRI. So I say carry on arguing!
I do hope it is a matter of everything settling down and I hope you will see improvement merely through time. But do carry on arguing with the doctors!
Very best wishes for a much improved 2019 from me!
By the way, you are still doing brilliantly, and you still need to be careful to look after yourself!
It’s been a massive journey for you all and I can fully empathize with you.
My experiences here come from a multi faceted view. For many years (10+) I worked with people with disabilities, everything from intellectual disabilities, to physical disabilities to brain injury to sensory impairments. I have had family members with brain conditions, one of whom passed from brain cancer. And then I have my own situation where I have an astrocytoma which has required multiple neurosurgeries including a craniotomy and the placement of a couple of shunts to drain CSF. So I have both a professional and personal experience in dealing with (well, trying to deal with) the realities of it all.
What I am about to say may sound rather rude but that is by no means my intent, so please do not take this the wrong way.
The medicos need to have an emotional disconnection from it all, if they didn’t they would become easily burnt out with in week. But their emotional disconnection does not assist the family, in fact can seem rather rude and insulting. At times it can seem that they treat the family a bit like mushrooms ie Keep them in the dark and feed them up on ‘bull#$%@’. They often have a theory that the less family know of the realities of it all the less stressed they will be, when in reality this couldn’t be further from the truth. We now all have access to the internet and the wealth of information this provides. The unfortunate part about this is that often the exact relevance regarding the info online can be difficult to align with our personal situations. We can easily read a worse case scenario and draw the wrong parallels between them and ourselves.
I can assure you that it is not only German doctors who maybe less than willing to do an exam that may prove that a procedure has not been completely beneficial, despite being clinically necessary such as the placement of a shunt. The human brain can be correlated similarly to a computer. If we opened the computer box and threw in a handful of metal flakes there would be short circuits and malfunctions all over and similarly by opening the skull and disturbing the fine circuitry within there must be flow on effects. Doctors are less than willing for such questions to be asked nor investigated as this could bring their practises into suspicion. I say this from my own neurosurgeries and resulting symptoms. When I questioned the surgeon he became insultingly defensive, querying if I intended to legally sue, which I had/have no intention of doing. In my view if they hadn’t operated I’d be dead. But in his view I was questioning his professionalism.
I can completely appreciate the ‘seesaw’ you and your family have been on, this is not an easy route and I’m sorry to say but it will be a continual journey, hopefully not with as many ups and downs. The VP shunt will assist in draining and maintaining the appropriate pressure within her skull BUT these devices (often referred to as ‘appliances’) are plastic and have a tendency to deteriorate over time. The tubing can break or fracture and the valve can develop a fault. I have had of these faults occur, which has required further surgery and replacement of the appliance or part thereof. There are a couple of differing valves, 1)A fixed pressure valve and 2) a variable pressure valve. The fixed pressure is exactly that, non adjustable. If there is any fluctuation in pressure there is no way to alter the valve to compensate. The variable pressure valve does have the ability to be adjusted. The adjustment is done via a magnet contained within the valve. If this is the valve which your wife has this maybe why the medicos are less than willing to request an MRI as this can alter/disturb the settings and depending on the availability of a ‘wand’ to reset the valve may explain their reluctance to request such a scan. BUT, in saying that a CT scan can be conducted without such concerns. I have had both valves and presently have an adjustable, I have recently undergone a CT, just to check fluid retention. There is also a scan known as a shuntogram where they can trace the flow of fluid to ensure appropriate flow through the entire shunt system. But none of these test can prove concisely the exact damage nor its impact.
My last few surgeries were back in 2013 and initially I was told that my ongoing pain was recovery pain, but still today I have some severe symptoms and have been given all sorts of reasons and diagnosis as to why. Everything from psychosomatic to nerve pain to migraine and been trialled on every sort of medication they can think of, none of which has helped. As much as I have tried to find an answer, and believe me I have tried, I have not been able to find that ‘magic cure’. For me now it has become a case of symptom management.
Luiz, you state that “…I don’t want to spend any more time talking about my side of things, but this has been a never ending nightmare for me…” and this I completely comprehend and understand BUT you MUST look after you through this whole process. If you do not look after yourself you WILL burn out, this is all a heavy load to bear for ANY individual and so you don’t burn out you need some way to release that pressure in a safe manner. Here there are community services that can help and assist. I am unsure of what services there maybe in your locale but I would strongly encourage you to speak to your local doctor to establish the availability of such services. Taking all of the weight on you yourself is not fair on you yourself. We all need ‘a timeout’ from time to time. Asking for such help is NOT a sign of weakness, but rather a sign of strength, a sign of recognition that we can’t do it all by ourselves. And that takes some self insight.
Please know that we are here to assist, even if it is from behind a keyboard, so please ask if we can assist, we will.
Merl from the Moderator Support Team
P.S. sorry for this LONG post.
Merl, double for that post!
Luiz, we are here to help and make sure you look after you. Richard
Dear Richard and Merl,
Thank you so much for your empathy and support!!
Her hallucinations and paranoia are slowly diminishing, as well as her orientation in time and space seem to be getting better slowly. It all seems also to be correlating to the right amount of drainage of her CSF (she does has a programmable shunt that draines from 2 separate ventricles). She is also surprisingly starting to write better as she was before the surgery, so, once again, a good sign! She was able to play “Monument” (an iPad game that requires lots of logic, visual perception and coordination) all by her self! And that is something she really couldn’t do before the surgeries…
I’ve kept insisting for an MRI exactly to know what to expect regarding new damage that might have been done to her brain. I too, am 100% grateful to the doctors who have saved her life and keep doing so. They do regular CT scans, and they do not show any new bleeding or stroke, as well as show when they need to set her shunt parameter to a higher or lower level of drainage. I think they are now finally finding the “sweet spot” and she seems to be getting better.
And your analogy makes a lot of sense, Merl. I think that is one of my biggest sources of anxiety every time I hear about anything needed to be done in her head. I do hope that most of it can be resilient to any failure and recovered with time and patience… more than a computer would do ; ). And your description of the emotional distance of doctors also made a lot of sense, as well as made me feel more empathy to them.
And thank you for your concern with myself as well. I did take this to the heart. I am accepting more a helping hand as what I’m used to (I’m unfortunately the type of person who thinks that can handle it all, though since everything happened, I did change a lot).
One of her doctors offered me to have a psychological counseling for myself and I’ve agreed. It might be indeed a good point to, for these ups and downs certainly affected me greatly. But… seeing her getting better and better is what really makes me survive at the moment. When she was back at rehab and improving I could even come back to work part time. But I do know one thing. This whole history will make us evermore stronger once this is only a part of a distance past, a history of her resilience and strength.
Hi, and I am still eager to hear more about all sorts of activities that made you or anyone improve the most during rehab, specially the first months in the acute station.
I am quite concerned that her current rehab (or the one she’ll be back to) is only offering to her 30m of PT + 30m of OT + 30m of ST and a regular visit from the psychologist. But I went to different other rehab clinics in our town (Berlin) and it seems that all of them are quite understaffed, so this would be the same for all of them. This does concernes me for she tells me she feels it is too little and she could do more - I do know how this sounds, as if she is trying to “rush things down”, but I assure you this is not the case. I spend most of my time with her practicing things, which I think that a therapist could do a much better job…
Going to another town is unfortunately out of question to us, for I depend on my job (and correlated visa) to sustain her recovery, as well as sending her to a rehab clinic far from our home and her dearest friends would definitely have a negative impact to her mental and emotional health (she does feels really alone and anxious all the time, even with me visiting her daily).
What do you think? Are we making too much out of her rehab session time length? How else could I help?
Thank you again!
It sounds like you’re both doing well. I’m really glad the hallucinations are fading and the doctors are managing her intracranial pressure well. As Merl say, it sounds like CT is appropriate for a scan where MRI is not if you have a shunt fitted.
The only thing I know about physiotherapy is what the doctor on the film I shared with you said, which was that he doesn’t understand why some hospitals offer rehabilitation PT only five days a week: his view is that seven days – no gap in which to regress – is much more effective. So, I think get as consistent a PT regime as you can. Not to be rushed at, though determination is a good driver to keep at it.
I am sure it will take a long time but you might discuss the pace of PT with the hospital and whether doing more would be beneficial.
Really good to take up the psychological counselling! Well done! Especially for a man: we are rarely good at allowing ourselves to take up help. Keep doing the right things.
I still think you’re doing brilliantly – now, both of you!
I know that “I want to do more” thinking. Ohh boy do I know it… …and it still plagues me today. But it takes time for the body and mind to heal and adjust, pushing it is not, NOT, a good idea. I had the view I want to be right, and I want it right bloody NOW. I did push it and pushed too hard, too soon and ended up doing myself major harm. ahh, don’t do that. As you both are finding, over time there is improvements and some days they may seem small but push it too much and things can end up going backwards. It’s at times like these that we learn to celebrate the little things, even days of exhaustion can be a learning, a learning of our limits.
As for your '…accepting more a helping hand…" Good to hear. We, males, have a societal expectation placed on us ie “Ugg, I man, I strong”. I call it the ‘Caveman mentality’ but having the self insight to see that we need help makes us a better person. That self recognition takes real courage to see that we are vulnerable and to acknowledge it, well, that takes balls. Many ignore it and become angry and self destructive (well, I did). Again, don’t be doing that. This whole process is something nobody ever wants to go through, EVER. We can use it as a negative and get angry at the world or use it as a positive and learn from it. Learning from it can only make us a stronger better person in the long run. And you are doing that, so congratulations, well done you.
You state “…I spend most of my time with her practicing things, which I think that a therapist could do a much better job…” I disagree. A therapist maybe able to give clinical direction. But that love and support can only come from you and that is worth 1000 times what any therapist can give and the same goes for sending her to a rehab clinic. Rehab is good, but psychologically friends and family are much better.
This thing called recovery is a marathon, not a sprint. Trying to sprint for the first kilometre will kill you before you are even 1/2 way through the journey and believe me it’s a long journey. Slow and steady is the only way to survive it for you both. (I say this now, but believe me, I too wanted all to happen yesterday too).
Luiz, you are doing OK. You are probably stronger than you think. You are acknowledging both your wife’s and your own needs in a very balanced manner and that takes some real insight. Many do not have such insight I can assure you and it all becomes overwhelming. Look, we all have ups and downs along the way but your doing OK. You should be giving yourself a big ‘Well done’.
Merl from the Moderator Support Team.
Thank you Richard and Merl! As always your support is amazing. Thanks for sharing all of your thoughts and experiences.
I will keep pushing to have a steady 7 days PT as soon as she is back at rehab. And Merl, I really liked your marathon analogy! I’m keeping that in mind and trying to both encourage her to do the same, as to incorporate that thinking in my own life and way of surviving it with her.
All the best,
Don’t have much to input here because the moderators have been so helpful. Sorry to hear about the roller coaster you’ve been on. My daughter also had to return to acute care after starting rehab so I know what a defeat it feels like. Glad they got the shunt business sorted for your poor wife. In terms of the confusion/hallucinating, I was wondering if anyone spoke to you about ICU delerium. You can google it. At one point they thought my daughter was experiencing that, but I’m not sure. This very confused state of mind is also sometimes a common stage of brain injury recovery. Have you ever heard of the Ranchos Los Amigos scale? It’s used to describe where a patient is in his/her recovery. I found it very useful when trying to understand my daughter’s state and expected stages to come. We just passed the second anniversary of her rupture (also cerebellum) and I cam honestly say it’s taken me those full two years to feel “normal” again. It certainly is a mega-marathon. One more thing, I lived in Germany for a bit when I was a tennager so I know that Germans are renowned for being honest and not sugar coating any situation. You’re not likely to get any “warm fuzzies” from your wife’s doctors which is really hard as the caregiver. One of the neurologists who examined my daughter shortly after her rupture was from Germany. She was very detached and after she left my husband was devastated and felt like she had no hope at all for our daughter. I had to explain that it was her Germanness!
I hope the return to rehab goes well!
It has been a while and I wanted to share with you the rather difficult development of everything.
By mid-January, it turned out that neither of her shunts (the one in the 4th ventricle, or the one in the left lateral ventricle) were improving her state. They have then decided to take one of her shunts out, clip the other, and put a prosthetic bone flap closing her head behind. And for a while that seemed to be a miraculous solution! She went back to rehab, got stronger quick… By the end of the 3rd week, she was already starting to eat, speaking a lot better, hallucinations were gone, and had even started to do walking therapy standing up!! (something quite similar to the progress portrayed in the documentary you’ve sent me, Richard!)
But then, once again, complications, and back to the ICU. The hydrocephalus made a come back, this time on her right lateral ventricle. They’ve observed her for a while, for she seemed 100% fine, though the CT showed a massive increase in her right lateral ventricle. After she seemed to be worsening clinically (having trouble waking up), the’ve decided to operate, and do a Pellucidotomy to make her lateral ventricles communicate (for some reason, CSF was not flowing between them in the way it should). The operation seemed to not work, and worse, there were signs of a brain infection now. She has then taken off the inactive shunt, further did a second Pellucidotomy (which seemed this time to solve it), and last week she has once again had a VP Shunt implanted on her left lateral ventricle. For the moment it all seems fine, CSF is controlled and flowing as it should, ventricles are thinner.
But these complications have taken their toll, unfortunately. By these last developments in the ICU, she has had a new bleeding on her frontal lobe, and worse: a bilateral damage to her midbrain in her brainstem, caused by the inter-cranial pressure of the uncontrolled hydrocephalus. She went back into a coma for the past 2 weeks, and only now is starting to open her eyes and presenting some sort of response to stimuli. But her right eye is not moving anymore, her whole right side (which was the strongest before) now seems weaker, and we are not even sure wether she’ll be able to move all her body parts again. She does do it very rarely. When we ask her to do it, we can see she understands us, and she is trying and struggling to do it, but she can’t - even a “simple” thing like blinking her eyes… Her swallowing is also a lot worse, she can’t speak anymore, neither follow things with her eyes… She has done a couple of EEG that has also showed she was starting to have ever increasing seizures (which also were not there before!), and now she is being treated with Keppra 1500mg 2x a day and it seems to be working.
It not only seems we’ve went back 10.000 miles and came back to ground 0, it seems we will now restart everything again, with an even more serious damage done to her brain.
So far the doctors have told us that the Cerebellum is very capable of good rehabilitation. But the Midbrain… is a different story. So far we do not know even if she’ll be able to regain full consciousness, for the midbrain damage has indeed affected her reticular formation. The doctors do not dare to make any prognosis at the moment, for there is still a bit of swelling due to the past few weeks complications. We have to give her more time. But I’d nonetheless very dearly like to find more specifics and cases of people rehabilitating from a midbrain injury - for so far it has been quite hard to find. I was very aware what to expect from her cerebellar bleed, but not on her new injuries.
I tell you, we have been going through this marathon with the highest of hopes, steady and strong fighting it day by day, happy with how much she could already accomplish. It just now feels so absolutely unfair. A sadistic turn of destiny. She has already struggled so much!.
But I’ll also tell you, she is the toughest and loveliest woman I’ve ever known. We will keep on fighting. And she is a true fighter, an outstandingly inspiring one. This does inspires me to wake up in the morning, and be there with and for her, bringing as much good energy as I can. Deep within my heart I know she will get a lot better still. And I’ll be there for her even if it takes 20 years.
I’m so sorry to read all of the unbelievable hills and valleys of the last weeks. I sincerely hope that period of ups and downs is over and you’ll see nothing but upward progress from now on. My daughter was hospitalized for 8 months following her rupture. We experienced setbacks too but nothing compared to what you’ve described. The fortitude required to weather this is something we don’t even know we possess, right? I hope you have supportive friends and family helping you through this time. My daughter’s bleed was over 2 years ago and she’s still making progress. We didn’t know for a long time if she’d speak or walk again. She does both very well now! (Her brainstem was compressed by the initial bleed but not permanently damaged. she has full brainstem function back)