"Suffering the Slings and Arrows of Outrageous Fortune"

Posts tagged ‘Doctors’

An Update: Neurology, Ophthalmology, EMG

Been awhile since I posted. Honestly, it has been pretty blah around here but maybe we are finally, slowly taking a few steps in the right direction.

~ Em’s CSF leak healed up without intervention, so we were able to avoid the ER. (She actually just refused to go and it healed up on its own.) She has had a couple weeks of feeling better now, so maybe the leak is done? I kind of doubt it but we can hope.

~ We will be seeing a new local neurologist tomorrow, since her NP, who has been seeing her for 4 years and originally prescribed Diamox, has left. That is a little nerve wracking but hopefully the new doc is able to continue to help.

~ Last week, we saw the ophthalmologist for Em’s double vision. She has a prescription for glasses that he says will help – reduce eye strain, reduce double vision and make reading/ seeing easier. She should have the glasses in a week or so. Praying they help her.

~ She had her EMG to investigate the numbness in her legs. It was, of course, normal. Everything is always normal. It was such a letdown – the tech assured us we would have answers before we left that day. The neurologist (the one at OSU we are seeing to figure out what the heck is going on with her pain, etc) did the deep part of the test and pronounced everything normal and that was that. Well, that was AN answer but certainly not THE answer. The test itself was no big deal – it wasn’t painful and she had no problems with it. She did have one bruise on her hip but other than that it was not a big deal.

~ We followed up with him yesterday. It was a better appointment, thank God. He is convinced her issues are all autonomic based and has a few options to try. An abdominal binder, compression stockings, a new med. I have my doubts but I guess if we need to jump through these hoops to rule stuff out, so be it.  He is backing off ordering the tilt table test – he finally heard us when we said going off all her meds was too big of a challenge right now. We are going ahead with the 24 hour holter monitor and will get that set up. We will follow up with him in 4 months. The one answer we did get yesterday is that he does not believe Em has MS. So, that is something. A relief for her and me too.

 

So, maybe some baby steps in the right direction.

Rinse and Repeat: Low Pressure Headache

So, Em is struggling with a low pressure headache again. Can’t sit up without excruciating pain, nauseated, her ears feel full, her neck is stiff, the Lumbar Puncture site is sore again. Hopefully, it is just low pressure and not menengitis also. The symptoms has been going on for a couple weeks now and they are not improving on their own. We have been pushing fluids and she is spending a lot of time laying flat. She sneezed a couple times a few days ago and it has gotten worse since then. I don’t know if the leak is in her ear(s) or at the LP site or both, but she is having text book symptoms so it is obvious something is going on. She has no quality of life right now – every few weeks, she ends up flat on her back for days until it heals up. Sadly, no one seems to know what to do to break this cycle or even cares enough to try.

We have tried to wait this out, but I started suspecting another blood patch is needed and, indeed, the doctor wants her to go to the ER to get one. She is, um, less than thrilled about this. The blood patch in January was a horrifically traumatic experience. They used latex gloves, even though she has a severe latex allergy, and she did not ever get numbed sufficiently so the procedure was excruciating. She is not eager to go through that again. And when I say not eager, I mean “you shall not pass”, “over my dead body”, “you’ll have to tie me up and drag me there, ’cause I ain’t going willingly” not eager.

The doctor can’t even see her in the office until July 8th and that is squeezing her in. If they see her at the ER, they will tell us to follow up with the neurologist. When I pointed that out, I was told that she can be seen sooner by one of the other neurologists, so that is maybe a silver lining? And I am hoping that, if I can convince her to go to the ER, since we have already been informed that a blood patch is not an emergency procedure, maybe we can arrange for her Pain Management doc who is an anesthesiologist, to do the procedure. He knows her, knows what she has been through, and hopefully can manage her pain both during and after.

I know we need to document this as an ongoing problem. At some point, one of the scans is going to show SOMETHING a knowledgeable doc is going to recognize as a leak and be able to do SOMETHING about it. We have to do SOMETHING to address this round of low pressure because she has no quality of life right now. We have to keep pushing to get this addressed. Now I just have to convince her to go to the ER again and to trust that it won’t be like it was last time. I have no idea why she would believe me if I promise her that, but that is what I have to do. As a side note, it is times like this that I would love to have every doctor who has treated her badly or hurt her or trivialized her suffering to see what their ignorance has wrought. Anyway…

A while back, I found a video that I meant to share here and just didn’t get around to it. It is a really useful video and it has helped me to gain a little more knowledge and fortitude to keep fighting this particular fight. It is about an hour and a half long but, if you are struggling with these symptoms, know someone who is, or has EDS which makes you more prone to developing these symptoms,  it is well worth the time to watch this video. And, he mentions EDS as one of the frequent causes of CSF leaks so it is great in the respect that it is spreading the word about EDS at least. If I was in California, I would be pounding on this doctor’s door and begging him to help my daughter…

The Mystery Headache: Migraine, Postural Headache, Spinal Fluid Leak

Eye issues: Real and a Bit Concerning

Em sees the eye doctor once a year, as is recommended for EDSers. This time it got stretched out to more like 18 months because we ended up having to see a new doctor (this is her 4th OD, we have liked most of them and we really liked the new one) and had a wait until she was able to take our insurance. The wait was not a big deal, but with all of the issues Em has been having (particularly the vision issues and possible migraine symptoms that have developed) the timing of this appointment yesterday was pretty good.

For better or worse, Em said her eyes were as bad as they had ever been yesterday so the timing was great to have them really see what she was experiencing. Her vision has definitely worsened since the concussion and then there was this weird thing of floating black spots that she has complained about.

Anyway, the docs in this practice have always been good about doing a thorough exam and the new doctor was no exception. We were actually there for a good 2 hours – even for an exam including dilation, that is a long time. There were some issues found.

  • There is some cloudiness on both lenses. This has developed since her last exam and the cloudiness seen is more than expected. The doctor said it is not affecting her vision yet, but, and I quote, “she may need cataract surgery sooner rather than later”. What?? She isn’t even 18. I don’t even know what to think about this, honestly. (I’ve seen various positions on whether this is an EDS thing or not but haven’t found anything conclusive yet.) The doctor said it is not a big deal and we will just keep an eye on it but it feels a little freaky to me.
  •  Her complaints of double vision are real. We are being referred to another Dr in the group who will evaluate her further and hopefully address the convergence issues that have worsened. It was already an issue (no one has ever followed through with dealing with it) but the concussion probably has brought it to a serious head. They are trying to get her in asap but there will likely be a bit of a wait. Should know soon.
  • Her vision complaints (the black spots, the black line that appears during her migraine like headaches)  are likely not in the eye but rather in the visual pathway in the brain. This is very possibly from the concussion, although, these were issues before the concussion. They did a scan of her retina, mainly for a baseline for future use, and it was fine.  Excellent even, so that was good news.
  • The doctor said it was a very good idea to have her worked up for migraines, considering the visual symptoms Em described. (To which I say, “na na na na boo boo” to the neurologist who ignored these symptoms. Not very mature, I suppose but so be it!)

Hopefully we can get her some relief on this – she is having an increasingly difficult time reading and functioning. I don’t even know what to think about the cataract issue but I am very glad she is in competent hands who are taking her seriously.

 

 

Inpatient EEG Monitoring

Finally…

We will be heading to OSU bright and early on Wednesday the 18th to begin the inpatient EEG monitoring that will hopefully rule in or, more likely in my opinion, rule out seizures. Clearly, something is going on that looks like seizures but I now have doubts that they are epileptic in origin. As I previously shared, I really believe Em is experiencing Complex Migraines – which can look a lot like seizures or even a stroke.

This stay has been a LONG time coming. These episodes started in February, after her concussion. She had a few months of Speech Therapy, which did seem to help a lot. Mid April, she said it felt like her brain was waking up and she was functioning better. The episodes stopped and she was able to do some school work and generally was doing better.

Then, she bumped her head again – again, a minor bump, but it was enough to cause a problem – and a week later the episodes started back up. I don’t think that is a coincidence. I feel certain they will be able to trigger the episodes and get some good information and a direction to go in.

We aren’t exactly looking forward to this – we are prepared for some serious unpleasantness. She will have an IV, can only be up in her room with supervision, and they will most likely deprive her of sleep to try and trigger a seizure. Basically, it is going to be a lot like the regular EEG that she had – only over days instead of an hour. That was not a ton of fun but she survived.

Insurance approved us for 3 days, rather than the max of 5. That shouldn’t be a problem since her episodes are pretty easy to trigger. I hope, anyway! One positive, we will have wifi, so maybe between strobe tests and hyperventilation and keeping her awake, I will be able to post during our stay.

I just pray that we will get some answers for going through  this unpleasant experience. This kid really deserves a break!

Another Ear Infection

Em was seen at Urgent Care on March 19th for a ruptured eardrum and treated for an ear infection. She finished out her antibiotics and that ear never really got better.

Late last week, she started complaining that it was really hurting again. So, I looked at it.

(My mom ordered us this otoscope which arrived in time for me to be able to see the rupture after it was confirmed and to be able to see that there was something not right with that ear now. Honestly, I have no idea what I am looking at. I am not a doctor. Don’t want to be a doctor. It all kind of creeps me out. But with the help of the included guide and the internet, I am able to have at least enough of a clue to say we need to head to the doctor. Speaking of which, it is nearly impossible to get in to her ENT, even in an emergency, so he really isn’t very useful at the moment but whatever. Sadly, the Urgent Care staff knows us by sight at this point. We were just there on the 29th because she had dislocated her thumb badly and we weren’t sure if it was back in. Sigh. )

Anyway, I really had no idea what I was seeing but it looked bubbly and yellow, which I assumed was an infection. So I dragged her to Urgent Care Saturday afternoon so they could confirm it indeed was infected and give her more antibiotics. It was another one of those days where she physically wasn’t up to going but she has 3 brain MRIs on Tuesday and we really needed to address her ear before then. So, we went and hopefully this round of antibiotics kicks the problem.

I would just love for someone to explain to me what the heck is going on. This kid never, ever had ear infections as a child. Not once. Not until she was 17. Now, in 6 months she has had 6, including a fungal infection.  2 ruptured ear drums  (at least). What gives? She doesn’t swim, she doesn’t take baths. She is not getting water in her ear from an outside source. Beyond wanting it to stop, I want someone to figure out why it is happening.

She has a follow up appointment with the ENT on the 26th and I am hoping we can make it until then without another trip to Urgent Care. She has more than enough problems to be dealing with right now without this ongoing crap. It is beyond ridiculous at this point.

The Big Appointment

I haven’t posted in regards to the important neurology appointment we had this month. Em had been referred to a neurologist at OSU at my request, so we could try to get a diagnosis – either of CRPS or small fiber neuropathy or something. Then the labs done during her LP in January showed some concerning markers for MS and sarcadosis and her local neuro wanted her to see someone more knowledgeable than him. Since we already had this appointment set up, it could serve both purposes. Then, the seizure-like episodes started and added an additional layer of wackiness.

So, basically we threw a whole lot of crazy at him. EDS, CCI,  MCAD, POTS, possible CRPS or “something”, evaluate for MS, seizures…  Did I leave anything out? Actually, I did: Post Concussion Syndrome. Sigh.

We have learned the hard way not to put too much hope or weight on any single appointment, but I would be lying if we didn’t at least sort of hope deep down that he would be able to give us a diagnosis and a quick solution on the first visit. When he didn’t, it was a little disappointing and overwhelming.

What he did was listen and order a bunch of testing:

  • He ordered an inpatient stay on the Epilepsy Monitoring Unit to try and figure out what is going on with these episodes. (Side note: after a month and a half of them and a helpful hint from a reader, I think we have a direction to go in. Video EEG monitoring is definitely needed, but will only be a start. More about that soon!) He definitely agreed that we need to rule out all the medical possibilities before jumping to the conclusion they are psychogenic. Don’t have this scheduled yet, but hopefully we can get it done soon, figure out what the heck is going on and stop it.

 

  • He ordered a bunch of labs, including mast cell testing. No one, including the allergists Em has seen has been interested in pushing for an actual diagnosis or any treatment other than Zyrtec and Zantac. It would be nice to have someone actually helping with this.

 

  • He ordered 3 brain MRIs – one with and without contrast, a MRI Angio and MRI Venogram. I am assuming these will help rule in/ out several things, MS for one. He also was not thrilled with the fact that she has been on Diamox for several years with no evidence and is wanting to make sure there is no structural issue causing her high pressure headaches. He did say he wouldn’t mess with her Diamox but he was clearly skeptical. However, he was shocked that cervical fusions are so common for treating neuro symptoms in EDS. We definitely agreed that it was wise to avoid a fusion if possible so that was a start. Perhaps, with time, I can help him understand the rational of the Driscoll Theory and why we absolutely believe Diamox saved Em’s life. There was just too much to cover in this first visit.

 

  • He ordered an nerve conduction study. This is definitely looking at CRPS but her exam also showed some very concerning numbness in her legs. I knew she had numbness but it was far worse than we knew. He pricked her all over with a pin. She mostly could not feel it in large areas on her legs. Like, at all. Her feet and hands are numb but her legs in particular have very little feeling. He seemed concerned. I know I was. So, perhaps we are looking at a neuropathy instead of CRPS? She is having increasing difficulty walking and I have to wonder if this is part of the problem. I don’t know but it is more than a little scary.

 

  • He ordered more autonomic testing – another Tilt Table Test and a sweat test and 24 hour Holter Monitoring. He is concerned that much of her problem is autonomic related and seemed to get caught up in the fact that she hasn’t been diagnosed specifically with POTS by the cardiologist. I am honestly not sure what a name does in this case – the cardiologist is treating her for/ as if she has POTS but has said he didn’t want to label it POTS because it is more complicated. So we have just used the term “Autonomic Dysfunction” this whole time. I am conflicted on this – on one hand, I totally agreed with the Autonomic Dysfunction diagnosis as opposed to POTS. On the other hand, I have felt for a long time that they are not doing much for her at the Syncope Clinic. We go once a year and they say, “Increase your Midodrine; see you next year”. So, maybe this reset is what we need. But… I absolutely dread the idea of another Tilt Table Test for her. He says the one she had several years ago wasn’t good enough, that he needs more information. I am not sure I totally see the point, especially considering she will have to be off ALL her pain meds for 3 days. I can’t even say how awful that will be. We are holding off on scheduling this until we talk to him again. We will need some help, some plan to make this happen – a 2 hour car trip is bad enough on a good day, I cannot even fathom how she would manage that trip without pain meds. If it is not absolutely necessary, I can’t put her through that. Yet, I wonder if maybe, with as dire as the situation is, it is necessary to figure out what is going on.

We liked him well enough, but the whole thing was a little overwhelming – he was very clinical, very data oriented and it was both comforting and annoying. Em was frustrated – exhausted, in more pain than she was in to begin with – because while she couldn’t feel most of the pin pricks, it still caused her pain to spike terribly afterwards – and terrified of having to go off her meds. So, she was not exactly rational about the whole thing, not that I blame her.

I eventually came to the realization that he addressed every single issue we brought up with him. He ignored nothing we said and is looking at everything. He was skeptical about CRPS, because it certainly shouldn’t present quite like she does. So it might be a that she has CRPS but the full body pain might be down to Central Sensitization or neuropathy or something else entirely. He seemed to know a little bit about EDS – certainly he knew the connection between EDS and POTS – so we will have to see what level of knowledge he has as time goes by.

The thing that really got me, was that he wanted to see her back in 4 months. When we actually scheduled that appointment, I realized it will be 2 weeks shy of a year since this all started. A year of this torture and no relief in sight. I know the wheels of medicine turn slowly and that we need time to get all of this testing done before we see him again, but knowing we are at least 4 months from any help was absolutely crushing.

So, we are getting all of this testing scheduled  and completed and just hunkering down and trying to survive.

 

Who Knew Ears Could Be So Fun?

Last Tuesday, we had our long awaited visit with the neurologist at OSU. It is complicated and we are still absorbing it. I will post later this week about it – I think my head is finally to the point that I can write about it.

But the fun, and I say that with the greatest sarcasm, never stops around here. A couple weeks ago, Em dislocated her thumb badly  (as only an EDSer can)  and we are probably going to have to get it looked at. Not getting better on its own and isn’t likely to, I think.

Then, on Friday, we were coming home from Speech Therapy and had just pulled into our driveway, when Em suddenly felt a loud pop in her ear and got very dizzy. We knew there was fluid behind her ear drum but had been told to just keep an eye on it. Honestly, it never stopped hurting – she just didn’t complain much about it in the last couple weeks because she had so many things going on:  something like an ear ache just doesn’t register very high on the priority list when everything is falling apart.

I called the ENT – it was late on Friday afternoon so I really didn’t think there was any chance of him seeing her and I found out he wasn’t in anyway so it was a wasted call. The nurse said to just go to Urgent Care. We were both too tired to deal with it on Friday but when her ear still hurt and she was still so dizzy on Saturday, off we went.

Sure enough, her ear drum is perforated. Again. She is on antibiotics and I guess we just wait it out. She has an appointment with the ENT in April, but I guess if it continues to be a problem I can call and hope he can see her earlier. Clearly, something is going on with that ear – not sure what it is and no one seems terribly interested in figuring it out. At least the perforation is documented and we know to be very careful about getting fluid in her ear for awhile. (I still think she had a CSF leak in her ear and that was the fluid buildup, but what do I know?)

The funny part about our Urgent Care visit, is that the Neurology Nurse Practicioner who has seen her for 4 1/2 years (and is the one who prescribed her Diamox) works over there on weekends and he is the one who saw her. So, we had a little impromptu neurology visit and were able to update him on what all has happened since we last saw him. I was still pretty ticked about the fact that he tried to send Em to psychiatry for her seizure episodes but I let that pass and opted not to strangle him or anything. We are getting the episodes addressed and he is fine with the course we are on (not that it would matter if he wasn’t, tbh) so it wasn’t a bridge that needed burning on that day.

I will update more about the episodes in the near future as well, since the new neuro is addressing them.  Brian did earn back a few points when he asked what antibiotics she could safely take. He knows she is complex and I appreciated that. And he totally understood when I said anything but the fleuroquinilones. I might be able to eventually forgive him assuming her seizures are psychogenic before attempting to rule them out. Maybe.

So, anyway, another perforated ear drum – the second since November. Like she needs another problem.

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