I knew this wasn’t going to be an easy road, but it’s getting harderand harder every day. I am honestly terrified now.
My hearing is worse, yet again. I don’t know what to do anymore. I have no friends, family, no one around to help me adjust.
I can’t even find help from the state services to get sign language classes for me and my family. I am having to figure out methods of communication on my own.
I have NF2. I need an MRI every six months. I havn’t had a brain MRI for over a year now. Doctors won’t listen to me when I tell them that I need a brain MRI to find out what is going on in there. I don’t have another chance for a brain MRI until September, but the MRI isn’t even scheduled yet.
The doctors won’t listen to me. I went to a neurologist here where I live. He ordered a spine MRI but wouldn’t do a brain. Said he was going to let McElveen handle that part. I have several more brain tumors than just the schwannoma, so I am irritated with the response.
I had the spine MRI and he said I needed to see a neurosurgeon. He referrs me to one and I never heard from them. Finally I called to find out what the problem was and why I haven’t heard from them. They lost my referral papers. The nuse called again a couple of days later and said the the neurosurgeon here wanted to referr me to another neurosurgeon.
My legs are getting weaker, and these people are just procrastinating. Putting me off and giving things time to get worse.
I do not know if there is a tumor in my spine that needs to come out or what. No one will give me any answers. I am going down hill and no one seems to care.
Not only for my hearing, but also the facial and tongue nummbness as well is the reason I need an MRI ofthe brain. No one seems to care about this issue I am having either. I am being toyed with and I am not too happy about it.
I emailed Dr. Friedman today. Asking him what I shoulddo if I can’t get any doctors to take my problems seriously. Also I asked him about the right side causing too much damange to the brainstem and that ABI couldn’t be put in. The left side is my last chance andoes he think I should hold on to hearing as long as possible and risk having the tumor destroymy chances for an ABI again, or get it now while not too much damange is done?
Ya know what he said? I suggest talking to Dr. McElveen. Now I feel really alone that no one is caring about me. In my email I told him already of Dr. McElveen’s thoughts and wouldnt’ even order an MRI.
I am so depressed now. I don’t know if I can do this if not even the doctors are willing to talk to me.
by Paula, on 04.07.09 @ 1:32 pm
Holly, aww, sending big big hugs. There’s nothing I can do from here, but just wanted you to know that I care about you, and think of you a lot. It’s such a good job you are a fighter, as a lot of people really would have given up by now.
Praying for you.
Paula xx
by Cheryl, on 04.07.09 @ 10:37 pm
Holly,
I don’t even know where to begin. This is such a lot for anyone to have to deall with. I am such a long way away, and, to be honest, even if I lived closer, what could I do? It’s the same answer. I can pray that God will lead you to a doctor who will listen to you and advocate on your behalf for the very best treatment for your situation. I am also stunned that you are receiving no help in the matter of communication and other adjustments to the hearing loss that you have experienced. This is all just so wrong!!
I just wanted you to know that someone does care. You are an amazing young woman with absolutely bucketloads of determination. There must be days when you just want to lie down and give up because of how hard it is just to do the basics of what needs to be done each day. Don’t give up, Holly! Don’t let them ignore you and shove you off onto somebody else. I hope that your family can really get behind you and help you to get the doctors to give some proper answers.
I am praying for you, my friend. That’s not only the only thing I can do, but it’s also the most powerful. When you have a veryspecific need, or something that you really want to focus on for prayer, please send me an email and I will join my prayers with yours.
Sending big hugs and praying a blessing on you and your family!
Cheryl
by Yvonne Foong, on 04.08.09 @ 3:29 am
Hi Holly
It must be tough dealing with your hearing deteriorations all alone while your husband works during day time. In addition, you have to care for Isaiah.
Reminds me of my own experience, losing my residual hearing. Even though I could see, the experience was still frustrating and scary. I remember I kept e-mailing Dr. Friedman with questions then. Like you, I wanted to try and preserve my hearing, and asked Dr. Friedman to send my scans to Dr. Fukushima. But Dr. Fukushima felt that my tumor was already too large for any chances of hearing preservation.
I am sorry that Dr. Friedman’s way of responding to emails is not very encouraging to you at this moment. Believe me, I used to get frustrated too. But over time, I learned to ask Dr. Friedman very specific questions in order to get very specific responses. Then figure out the situation on my own with the clues that he gave.
Another thing that could be the reason for Dr. Friedman’s brief replies has to do with the law. Some people might take doctors’ email responses too seriously and consider these responses as proper medical advice. But doctors can only have a learned opinion about your case when he understands your history, reviews your recent scans, and able to identify your symptoms.
Any doctor who is quick to judge is likely dubious.
Why don’t you try asking Dr. McElveen to refer you to another Neurosurgeon for a second opinion? Since the last referal didn’t work, ask him for another. Find one that you are comfortable working with, then remain under his or her care. It took me four years to understand Dr. Friedman as a person, rather than just a doctor.
Once a doctor becomes familiar with your case over time, he will be able to help you make decisions based on long-term benefits. Recall when I sent Dr. Friedman my scans last September? He reviewed them with other doctors at House Clinic. At the knowledge that my optic nerve tumor had grown, they believed it should be dealt with first and as soon as possible. Even though I had larger brain tumors. The other surgeons I sought second opinion from besides Dr. Friedman did not think the optic nerve tumor was urgent because they didn’t know my other eye is blind. But Dr. Friedman knew because he had seen me for so many years, he could remember even though I wasn’t physically present for a consultation.
Therefore, once you find a surgeon you trust and feel comfortable working with, try to remain under his care consistently so that he can help manage your illness with your long-term benefits in mind.
What about asking Dr. Fukushima to be your primary physician?
Yvonne
by hollyalonzo, on 04.09.09 @ 6:40 am
Hi Paula and Sheryl. I appreciate you two thinking of me, and yes I am a fighter. My friend calls herself “Ddaf, blind, and determined” she and I are a lot alike in many ways. Both of us have gone through very hard times but but always keep going.
Yvonne, I thought I did ask a pretty spacific question. But I do nt have a concistant doctor. I can not find one that seems to care about me and my issues. They seem to be looking at me as just another chance to gain experience. Dr. Fukushima is gread “Known as the man with God’s hands” but he is in such high demand. He is always so busy. I’ve asked his assistant Lori several times if he would be my ns now and follow me for all of my brain tumors. I got a response a while back that kind of leaned toward saying that he could look but would only handle the ones that others felt they couldn’t. Or something like that. I have not got a response back from his office in quite while when I was trying to ask for an MRI and telling him that I thin k I need to be seen right away. Shrugs.
Holly
by Connie Mohney, on 04.09.09 @ 3:32 pm
Dear Holly,
I really admire you and respect you. You are a very determined and brave woman. If I were in your shoes I don’t think I could deal with what you are dealing with. I think of you and pray for you often.
Connie