Letters to my doctor. ( Neurosurgeon-Dr. B )

Progression Too Fast
7-26-11
Dr. B.,

I'm afraid that my left side is going to be paralyzed really fast. I had mentioned to you about my left torso being so hard, so you sent me to have PT. It helped but each time after walking around or sitting, it would always come back.

It is 5:45 in the afternoon and my headache is excruciating and the left side of my shoulder and neck is so stiff. The last few nights, I couldn't sleep because of itchiness on my left hands, I thought maybe of low blood circulation.

I'm afraid that if I go to the ER, doctors that aren't experienced with SM are going to cut me open, fiddle with my neck, sews me back up and then sooner or later there's a problem.

Please, please doctor. Tell me what to do. Hope you have a chance to read and reply to this e-mail tomorrow. Thank you so much doctor B.

Sincerely,
Aurora E.

Thank You for Everything Especially Being A Chiari Doctor.
aurora erickson
9/30/11

to pbologne


Dr. B.,

Hope you're doing well.Thank you for being the doctor that we can trust and the doctor that we can run to. Thank you for all that you do for Chiarians.

My suture is looking good, has not been wet since the day of surgery and I have been wearing my Miami collar 24/7, Kevin won't even let me take it off for even a few minutes!! That's just the way he is, ( sorry that some of your staff are bothered by him) but he is a nice guy and he has been very supportive and just wants the best for me. Unlike my ex-husband who just treated me so badly after finding out about my condition.

By the way, I also started to use the fusion stimulator.

Doctor, I know you have done the best for me but as you have mentioned that with my other symtoms you just can't do anything about it. I have been noticing the progression in my symptoms and I thought that even if I had the cervical surgery that I would still continue to progress but I wanted to have the surgery and don't regret anything. I am happy that I was able to go and I feel the relief in my cervical area now. I still hope that it will slow the progression.
What has puzzled me is that I always had weaker right side but how come the stiffness is on my left? Can you please explain that to me doctor. To me I have symptoms of hemiplegia but both my arms
are weak? The sleepiness, that sometimes I feel like I am not getting enough oxygen in my brain is horrible, it doesn't allow me to think. I always had problems in school esp in college, I didn't remember what I had studied. I had A's in my practical subjects but C, D or F where there is memorization. My vocabulary has become more and more limited.

I eliminated the difficulty swallowing after surgery by having quite a few servings of ice cream but now, the problem of food not getting down my throat that easy and just stays somewhere in my stomach for quite sometime is back. Although I had that problem for a long time, it's just scary knowing that one day I will need to have a tube inserted into my stomach to feed me. A new symptom of diffculty chewing is also worrisome, I had TMJ on my left jaw for years now, but this is worse.

I have muscle twitching esp on my left leg. I try not to sleep on my back because of that nerve in my head that extends down to my shoulder and back and when it is pressed against the pillow it shuts the circulation on my left side and the pain is excruciating and it shoots down the whole arm. Also, the pain on my right fingers, the ring and small, that extends to my elbow is back, I blame myself that maybe I did something to cause it to come back about a week after the surgery or maybe because I can only sleep on one side which is the right, it always gets numb at night from constantly getting pressed. Doctor, can you please explain to me the procedure that I would have to ask the Pain Management to do.

Sometimes I still feel lucky somehow that at least I can prepare for the future, lol. At least my life didn't change overnight, like others that have paralysis. It could have been worse, I guess.


Thank you again for your time.

Sicerely,
Aurora


Steroid Injections
10/27/11

to pbologne


Dr. B.,

Many years past, I had benefited from the cervical epidural injections that Dr. Kreis of the Pain Clinic had administered. I was always thankful during those times when the shoulder pain was eliminated from the list of troublesome body parts.

I met with a different doctor at the Pain Clinic a week ago and mentioned to him I was hoping to get help with the occipital trigger point pain, the shoulder pain and if possible, the back pain. After all the test done, he concluded that he will not give me the cervical injections given that I have a syrinx explaining that he has a different opinion than other doctors and with regards to the occipital trigger point, he wanted me to ask your input since I just had surgery, it might be too soon to get an epidural injection. And with regards to the shoulder pain, he said the purpose of the ACDF might be to relieve pressure on the shoulder so maybe to wait until I am healed.

In terms of my medications, he advised me to get back and increase Neurontin again since it has always helped me but I am hesitant because your PA explained you wanted to wean me off of it. I am on 60mg Cymbalta once/day, 20mg Ultram 3x/day and Neurontin 300mg 3x/day but doctor I am miserable. ( I discontinued Dilaudid with the advice of the Pain doctor) I feel that I cannot go on like this, I can feel the stiffness in my mid-back going up higher, feeling like I have a hole in my chest that comes with pain that is very deep making it even harder to breath. The pain on the left side of my head shoots down to the left shoulder into the left arm numbing it. I have this electric back massager that I lay on that helps temporarily with the back stiffness.

I feel bad having to e-mail you with all these negative things despite doing everything you can to help us, although we all know that the surgery will not help Thoracic problems.

Please let me know if steroid injection is advisable right now and what's the best substitute for Neurontin. I tried Lyrica but is afraid to continue because of it's link to wait gain, hehe.

Thank you Dr. B. Enjoy your weekend with your family.

Sincerely,
Aurora

I Need Your Input
12/2/11


Dr. B.,

I hope you had a nice Thanksgiving celebration.

I am writing this e-mail to ask you if there is anything else that could be done to save myself. I want your advice as to what is best for me to do right now please.

I wanted to believe you when you said that you doubt paralysis is in my future, but I am scared my torso is stiff on one side no matter what I do. It is impossible to sit, it is excruciating, it makes me want to vomit. I lie in bed about 80-90% of the day only getting up to shower and to have meals. I know not using my limbs will paralyze me even more.

I just want you to be honest with me doctor, it is not going to hurt my feelings. I am ready to face it and I feel very tired trying to walk, I just want to give up at times.

I finally realized that to stop taking Neurontin will open my eyes to my body's true capability. I know it is a bit late. I admit doctor that I can say I abused my body because of wanting to do something all the time. I never liked to sit around.I guess being lazy is a plus when you have Syringomyelia. But I could have been more careful of the things that I did. In 1999 when I resigned from my office job for reasons that I could not sit, I told myself there has to be a job where I only stand up and I did it for five years. I always told myself, I wanted to have a life. When I had to quit that job, I tried sales. When it didn't work, I started a baking business in 2007 and I was baking biscottis sometimes for ten hours straight. Stupid me, I thought I was Superwoman!

I wanted to believe you when you said that you doubt paralysis is in my future, but my torso is stiff on one side no matter what I do. It is impossible to sit, it is excruciating, it makes me want to vomit. I lie in bed about 80-90% of the day only getting up to shower and to have meals. I know not using my limbs will paralyze me even more. I can walk but cannot stand up for a long period of time. I had the same symptoms in 1999 except now is worse because of the stiffness of my trunk. I do exercises at home using the ones I learned from PT and adding massage to it, I loosen it but it feels thick and numb inside and it is very very painful like someone is breaking it. I'm not sure if this is the best thing for me right now.

Doctors at the Pain Clinic here at UCDavis refuse to give me any injections for the third time. I just know I'm hopeless but I want to hear it from you. Also I want to ask, if it's true that all quads have had or have a hand or finger dysfunction, which I do not have til now, instead of my fingers being stiff though is my trunk. I have never read or heard of anyone who had their body get paralyzed first. And does that mean I would be totally bedridden? Because now I have so much difficulty using my wheelchair. Unless someone will drive it for me. My wheelchair seat has been changed to where I can lie down but without a driver it is very painful to try to sit up even a little in order for me to drive it.

Doctor, I appreciate everything that you have done to save me, I have had the best years after my surgery in 2004. My only regret was I could have been more careful with my body. If not for the effort of doctors like you and Dr. Milhorat I would not have had those good years. I thank you for my recent surgery relieving me of the constant neck pain I had for many years. I treasure everything that you had done for me, they're a gift and no matter how challenging the years to come maybe, will always put a smile on my face.

Thank you very much.

Sincerely,
Aurora


I Need Your Input
12/2/11

Dr. B.,

I forgot to mention to you that the pain on the left side of my neck (trigger point pain)hasn't bothered me for a while now. I started to massage it when the Pain Clinic refused to give me an injection the first time. So far, I haven't had any pain there or below it except the lower torso.

Thank you.


Jan 19/12


Dr. B,

Happy New Year!! Hope all is well.

As much as I wanted to get an MRI immediately after you ordered it, I had to be with family in San Francisco after my father went on a coma. Most of December was spent at the hospital for most of the family members waiting and hoping for our Dad to wake up or talk. He passed away on Dec. 29.

I am scheduled for an MRI on the 25th of this month.

I'm hoping this is just a flare up but my condition has been the worst so far, it has not gotten better. Contradictory to what you mentioned before that paralysis may not happen in my future, I feel the reverse and it is fast coming or I should say beating me at will but very slowly! Not to eschew responsibility but it's almost easier to be totally paralyzed and have those assistive devices rather than being in this predicament. I can't even draw the blinds without so much pain and difficulty breathing. Now I need someone to control my power chair for me, one because I can't use my hands to control it and two I cannot sit, my body has to be totally flat. I don't know what I had done wrong especially with a small syrinx, but why all this bad symtoms. Does the size of the syrinx matter between individuals?

The muscle that I used while limping for many years(located at the lowest end of Thoracic spine, it must be the Psoas Major) has gave out that it won't even let me sit. Does that mean I cannot even sit in a wheelchair, I have to live in my bed? If that's the case, I need to give up this four poster bed and need one that could easily be moved from place to place, haha.

Doctor, I know you want to help us as much as you can but if after having surgery in September and the degeneration continues, I understand that there's not much that could be done. Please let me know if I should continue to have the MRI.

Thank you again for your time.

Jan 21,2012
FES

Dr. B,

Can you please elaborate how Functional Electrical Stimulation is applied or used in paralyzed muscles and can it be applied in my case?

Thank you.


Jan 29,2012
Feeling Much Better


Dr. B,

I started to feel much better yesterday, after spending most of the day in bed for almost a month. Now I can walk around the house. Very happy to be able to do this but always have to be careful, it doesn't last long and I'm still not able to sit down.

Dr. Kreis from the pain clinic wanted me to start Hydrotherapy. I expressed my concern about PT but he's adamant that I go saying it will help after a year but not just six months.

Dr. B, I will wait for your recommendation after seeing my MRI results. Thank you.

Sincerely,
Aurora


Feb 2 (9 days ago)
Hoping MRI is Fine



Dr. B,

I hope you're doing well.I went to see my GP yesterday and he is referring me to another Pain Management Clinic, to a GI and I'm starting Hydro Therapy on the 6th.

I was able to sit today for the first time for about 15-20 min. but had severe visceral pain and bloating. I feel more relief around my neck area and less pain around the root of my arm. I believe it must be from the successful ACDF. I wonder why with a small syrinx like mine, I have been symptomatic and deteriorating rapidly. I am hoping it will go in remission. I may just have to learn to live with all the symptoms that I'm having. Maybe these all comes with having Syringomyelia, probably more so because I didn't get diagnosed for 8 years after symptoms became more pronounced. Also I had symptoms since I was 9yrs old.

Your clinic received my MRI disc last Tuesday noon. Hoping you'll have a chance to see it doctor and I'll be happy to hear your recommendations.

I understand how busy you are and I will wait for your reply. Thank you again for your time.

Sincerely,
Aurora


Feb 8 (3 days ago)
Very Concerned


Dr. B,

I hope you're doing well.

I'm not having fun anymore, in fact I am very concerned about my situation. My torso continues to become spastic despite all the efforts to loosen the muscles there. I'm sure that there is no stimulation coming from the spinal cord going to those muscles. Doctor, it is miserable not to be able to sit down and bend my torso. After walking for a few minutes, I feel that I need to lie down. These are symptoms from more than ten years ago that came back to haunt me and they're worse. Even the dysphagia is lurking around.

After water therapy last Monday, it was impossible to walk. The muscles in my torso were even more tight the next day but I'm willing to give it some time. This is only the beginning. I'll try anything. I'm just not sure which solution is right.

I know that we have to learn to live our lives as best as we can regardless of all these symptoms. I would just like to know if there is anything that could be done to my torso problem. If you tell me there is nothing that we could do about it, then I will accept it and just move on.

Thank you for your time.

Sincerely,
Aurora



Feb 9 (2 days ago)
Very Concerned



Dr. B,

Thank you so much. I've read about Intrathecal Baclofen they use for children with CP which sometimes causes serious complications. Botox injections or Baclofen pills under local medical supervision, sounds much more safe and a much more feasible plan. It should help regulate the problematic muscle temporarily or long term, it may even alleviate the pain but any respite that I may get emanates from you who has spent most of his time learning about our condition.

Even after I'm done fighting this ailment, I will still be smiling when I think of you and Dr. Milhorat and Dr. Kula and other doctors at TCI and NSUH who were involved in our treatment and for all your best efforts. I received so much from all of you. You put an extension to my life and I cannot say thank you enough. Thank you for helping so many of us.

Sincerely,
Aurora

aurora erickson
Feb 12 (6 days ago)


Dr. B,

I would like to apologize for my negativity in my e-mails. I was carried away by the severity of my symptoms. I'm very sorry.
I was wondering if you had a chance to see my MRI disc? Thank you in advance.


MRI
2/14/2012

Dr. B,

I understand how busy you are especially now it's the beginning of the week, I know you are at the hospital. I will wait until you see my MRI, doctor and hopefully after discussing it with Dr. Mogilner.

You mentioned that in my last MRI before my surgery in September, the syrinx was small. I hear comments from friends with the Syringomyelia social network that I have so many symptoms for having such a small syrinx. It may have been that I had severe symptoms from 1994-2002. About a year before my diagnosis, I had to depend on walking aid for ambulation and now and then had to have liquid supplements for nutrition because of severe dysphagia. Another thing is my family has a history of neurological problems from my mother's side of the family.

If there is no change in the size of my syrinx and you fixed the problem of Cervical Spinal Stenosis, does it mean that my condition could be reversed? If I'm having spasticity in my muscles that control my lower limbs and there is remedy for it, (GP Prescribed Cyclobezaprene)can I surpass paralysis? Or is it going to spread? I'm really at a loss doctor. I have more weird things going on with me right now. It's very cold at this time as we know it but I get so sweaty at night and for two nights in a row, I had spasms on both arms that lasted for 10-12 hours. My fingers, joints and elbows are all too sore and painful. My arms are so much weaker including my chest muscles. I feel so weak. I'm really scared.

As I mentioned it to you a while ago, I was referred by my GP to another Pain Clinic at UC but they redirected the referral to the Spine center. I don't think I'm ready to see a spine doctor here but if they insist I will, but no surgeries.

Doctor, I just want your opinion on my condition based on my symptoms and your findings.
Thank you very much.


Feb 15 (2 days ago)
Thank You For Everything

Dr. B,

I get it now doctor. I know there's not much that could be done for me. I have decided to stop going to Pool Therapy also.
I accepted the fact that there is still no cure for Syringomyelia and the sufferer eventually will get paralyzed. Most of my symptoms from 10-12 years ago are back. I even have this quivering of the left side of my tongue. I know that when the torso starts to get paralyzed, it doesn't take long for the chest and the arms to follow. I knew quadriplegia has been wanting to get into my life. My arms feel so weird right now and I can't sleep thinking I might loose use of them before the morning so I have to e-mail you now, I don't have a voice over software yet!

I don't want to be unhappy. I want to think of the good years I had after my diagnosis and I am thankful. I want to make good use of my hands before I loose use of them. I already sowed lots of seeds for my backyard vegetable garden, I have a spare room full of flats of sown seeds and I'm hoping I still can transfer them to my garden. I also contacted the local tv channel to show up and spread awareness of this insidious disease and hopefully carry on to other channels.

In fact, I want to be happy, as long as I can avoid being in so much pain, I'll be just fine. I had accepted this for a long time. Now I just have to prepare myself for it to come, get my house ready so when that day comes, I'll be okey.

Thank you doctor for everything. I will let you know what happens if it's alright with you.

Sincerely,
Aurora


Feb 16, 2012
Therapy Sessions

Dr. B,

If you say so, I will go on with the therapy. My next appointment won't be til the 21, but I promise to complete the one year therapy sessions.

Thank you.

Unfortunately, Still Have To Almost Pretend There's Nothing Wrong

I have had this spasms in my back for more than a year and at this point I am most concerned, scared and in even more pain than I used to have. I have been miserable. The pain is excruciating especially when I try to sit down. It feels like I have a huge knife on my side and in my stomach when I try to bend my body.

Last night, I thought that I was a bit bitchy to my partner so today when he called me I apologized to him and he responded that it wasn't just last night, it's been about a month now! I was surprised but I felt sorry for him.

So I realized that even when you're in pain, you have to almost act like there is nothing wrong. Imagine someone who has a headache, when my son has a headache, he's grumpy. How about if your pain is from eight-ten? It is very hard to pretend that nothing is wrong when you're in a lot of pain.

I try so hard to show respect but I can't help talking about the facts of my condition but if other people cannot understand that, I guess I have to even try harder and not talk about what is going on with my body but I can't pretend to be strong and healthy when I'm not. I can't be up and about enjoying myself even though I want to because I can't and I don't have the energy. It is very difficult to be in this predicament because not only your health problem that you have to deal with but people around you. Having a chronic illness can sometimes ruin a relationship, it creates a strain in a marriage or any relationship and it is sad.

I can try harder to be a nice companion but how can I make myself be more outgoing and happy when I'm ill? I might have to do a little research as to how you can pretend there's nothing wrong. I don't know how to live this life anymore. Some people think that you just have to keep a positive attitude even though you're so busy trying to figure out how you can get help from doctors who don't even know what is going on because you have a rare degenerative disease. I am getting paralyzed, that is just my problem. If that is nothing to you, to me it is a big deal because I am the one who is feeling the pain!!

Worried and Scared

Everyday I'm worried and scared. There's no stopping the degeneration of my ailment. Everyday seem like there's something new. A few days ago, I needed to handwash a couple of my shirts although my arms were weak and painful, I did and right after a new arm pain started to emerge but it all seemed familiar because I had it when I was about 9 or 10 yrs old until later years.

There is all kinds of weirdness, the difficulty breathing is abnormal and worse, my feet and lowest part of my legs to my ankles are like soaking in ice water like a burning acid. My wrists and all of my fingers hurt so much feels like they could just break, like they're porous or hollow. My chest and the root of my arms feel like they're always swollen. The pain is so deep specially on my upper back. I would ask Dora, my caregiver to poke it with the end of a rolling pin and then put her weight in it then turn it in circles. The pain could be so excruciating.

After my 8th surgery, an anterior cervical dyscectomy with fusion, I was so excited about the thought of not having to wear my neckbrace. I was disappointed again when I realized that I will never have a neck that would feel normal. The bone grinding pain went away but the muscle and nerve pain will always be there and it helps a lot to wear the soft collar. Without it I get dizzy and disoriented, can't use my arms and pain gets distributed to the back, chest and root of the arms. There's more and more that I can't do for myself. Scrubbing my body when taking a shower has become a challenge, I always run out of breath doing it. Doing launtry is impossible especially folding clothes or putting them in hangers.

I'm pretty sure it is from walking like a normal person because Kevin and I like to walk that the first muscle to really give out is the Psoas Major which is responsible in helping the lumbar spine through unilateral contraction bends the trunk laterally, while bilateral contraction raises the trunk from its supine position.

It forms part of a group of muscles called the hip flexors, whose action is primarily to lift the upper leg towards the body when the body is fixed or to pull the body towards the leg when the leg is fixed.

For example, when doing a situp that brings the torso (including the lower back) away from the ground and towards the front of the leg. It helps us sit and supports us while sitting. There has not been any sitting for me for a year and two months now. It's either standing or lying down for me. Imagine not being able to sit, anyone not can't will probably get crazy from frustration! I've been ready to die a long time! I just don't want to be selfish because I have a son. If not, there is really nothing to live for. I try hard to be positive but there's no end to this suffering and I know for sure it could get worse in time. Dr. Kreis of the Pain Management Clinic will not allow me to get any epidural injections anymore, according to him because I have symptoms of spinal cord compression, those injections are dangerous in my case. Okey then, so what can we do? He advised Hydro Therapy not for a six months but a year. Yes, a year! Do I want to commit to that? I said let me think about it. How can I be sure it will work for me? I guess I'll just go and do it. I don't know what's good for me anymore. ]6

When standing up, I can feel it in my lower back including the back of my legs nerves seem being pulled or yanked down, the feeling of heaviness makes you just want to sit. I can't sit, so I mean lay down!

I'm still hoping these will all pass meaning that I will adjust to the situation again. No matter how difficult the situation maybe, (other people that aren't suffering will say "It could be worse" ,it is easier said than done but when you're in that situation, you're the only one that knows. One day, I will just accept it because I'm in it!