vision,hearing, balance disturbances...

[shay_nicole]

my husband is 29 years old. He is taking the medication finasteride (5 mg, taking 1/4 of the medication each night) for alopecia. that is the only medication he is on. He as been experiencing SEVERE dizziness to the point of brief (2-3 sec. blackouts) memory loss, he can't remember what things that happened a few hours prior, hearing disturbances, like the volume is being turned down and when he lies down he hears wooshing sounds. he also is having visual disturbances. he is unable to focus on objects near or far randomly throughout the day, other times he can see and hear perfectly. it comes and goes. he also loses his balance and it has been happening for the past 6 months and it is getting worse each day... it was only happening a few times a week and now it is happening several times a day. He has been tested for diabetes, and the Drs have ruled that out... is there any connection to the drug that he is taking or could this be something more serious?

[Dr Santos]

Indeed, the last six months have been a roller coaster ride of emotion for both of you. But these things happen to make you both stronger in faith and love. A support group around you will also help you cope with everything that is happening right now. Always think positive and everything will be for the better. Take care of yourself also and hoping for your husband's full recovery.

[shay_nicole]

Thanks again for your advice! I am very happy that his tumor has been removed. The shunt is still something new for us, and we're trying to adjust. He will be coming home tomorrow. His stomach already hurts him, but they said he will get used to it. I'm hoping for a full recovery for him. This is NOT how I expected our first six months of marriage to go... We got married in August 2010 and 3 weeks later all of this started unfolding. Hopefully things will start looking up, and he will be better! I'll keep you posted on how things are going! thanks again for all the advice!

[Dr Santos]

Hi,
Thanks for the update. How is your husband? Shunt placement is usually successful in reducing pressure in the brain. And the major complications to watch for are an infected shunt and a blocked shunt. Aside from this, abdominal complications may also occur on occasion such as bowel perforation, ileus, pseudocyst or abscesses are potential problems.  That is why after the shunt procedure, frequent neurologic assessments and monitoring for infection is usually done.  Patients with VP shunts are encouraged to live normally. However, future activities will depend on the evaluation of his doctors and how the brain operation went. He may not be able to do some heavy activities as before but what is important now is that the tumor has been removed almost completely from his brain. Take care always!

[shay_nicole]

Hi! thanks for the advice! well, the team of surgeons decided to go ahead with the shunt procedure. My husband is now the not so proud owner of a VP shunt. It sounds like these devices are very risky, and I'm slightly worried. I'm unsure of how this will affect the rest of his life. I'm not sure if I've mentioned before, but he is very physically active... is there anything that he won't be able to do once he recovers from the surgery? I understand that he has to take it easy for a while, but I mean, like a year or so down the road, will he be able to resume is old activities? (he's in the armed services)

[Dr Santos]

Hi,
Normally, CSF glucose is approximately two-thirds of the fasting plasma glucose or around 50-80 mg/ 100 ml. A glucose level below 40 mg/dL is significant and occurs in infection, inflammation or bacterial and fungal meningitis. It may also occur in malignancy. Normal value ranges may vary slightly among different laboratories. It is best that you talk to your husband's main attending physician  and discuss the management plan and to clear any anxiety. Stay positive always. Take care and regards..

[shay_nicole]

Hello, It has been a while since I've posted anything. well, after having the fluid drained from under his scalp behind his ear, my husband ended up in the hospital with meningitis. He was on broad spectrum antibiotics, and his fever is gone. he's been in the hospital for 9 days now. There is a lumbar drain in place to drain the fluid off his head, to clear things up, the extra CSF is not around his brain. it is seeping out of a pin hole in his skull and accumulating right  beneath his skin on top of his skull. they are draining 10ml an hour and when they don't, the fluid accumulates again. They scheduled a VP shunt surgery for tomorrow, then they cancelled. The doctors have been testing the fluid and said that the glucose levels were too low, yesterday they were 14, and today they are at 4. I am quite unfamiliar with glucose levels. what is normal? what are the risks with very low glucose levels? what could happen? what does low glucose mean? It's all so confusing and there are so many doctors working with him, but none of them have the time to explain anything. they are in and out of the room in a matter of seconds. any input would be helpful!
Thanks SO MUCH for always answering my questions.

[Dr Santos]

Hi,
How is your husband? The shunt procedure is done to relieve increased pressure inside the skull due to excess cerebrospinal fluid (CSF) on the brain. A small hole is often drilled in the skull and a small thin tube is passed into a ventricle of the brain and another behind the ear to the abdomen or chest. A valve is placed also beneath the skin behind the ear and attached to both catheters. When extra pressure builds up around the brain, the valve opens, and excess fluid drains out of it into the abdomen or chest area, decreasing the intracranial pressure. Antibiotics and pain medication may be given after. The major complications to watch for are an infected shunt and a blocked shunt. Hope to hear from you soon and do keep us posted. Take care always.

[shay_nicole]

Thank you for your advice! well, we ended up back at the hospital this passed weekend. we had a doctors appointment with the surgeon, and he told us that CSF was building up in his head behind his ear. they tapped it to drain it out and sent us on our way. then saturday, there was more fluid than before, so they advised us to go to the emergency room to have it drained. we had it drained once more, but now, it is HUGE! worse than ever. they told us just to call monday and let them know what is going on and to schedule a shunt surgery. and what symptoms should i watch for with my husband collecting so much csf in a small location?

what exactly is a shunt and how is it put in? the doctors in the emergency room were very vague about everything.

[Dr Santos]

Hi,
How is your husband? Swelling is a common effect of brain surgery. It usually comes and goes then disappear as your husband recovers. It may take days to weeks and even months. Swelling may also cause effects such as dizzy spells, poor balance and coordination, and even confusion. If he is cleared to go to work by his surgeon, that is a good sign. It means that he is recovering well. However, it is still important that he goes for consultation regularly. Continue his medications and ice packs may also help. Take care and do keep us posted.  

[shay_nicole]

Hi! Well, my husband has been home for about two weeks now, and things seem overall, good. His double vision and hearing come and go, but other than that, he's functioning just fine. He's going back to work ( just in the office) in a few days ( I am driving him-Doctor's Orders!) there is ONE thing I'm concerned about though.... He's on Dexamethasone (Decadron) for the swelling in his head... The doctors said that after the removal of an Epidermoid tumor, things seem to become irritated, and they didn't give us much input on how much swelling is too much. He had his staples removed (all 40 of them!) about 4 days ago. his swelling comes and goes, and the doctor did raise his dose of the decadron (steroid) after seeing him, but still didn't say really what would constitute a hospital visit. I guess what I was wondering was how much swelling is serious? right now, above his ear, there is a large squishy lump where is head is swollen, and it's about the size of a golf ball right now. all around his incision is swollen as well, but there's no fever or redness, or even tenderness. He is NOT leaking CSF or anything of that nature, but his head is really hurting him tonight. Contacting his doctors and nurses is very difficult, and it sometimes take about a week to get a response, so any input would be good!

Thank you so much!

[Dr Santos]

Hi,
So nice to hear from you and its so good to hear that your husband is recovering well! Now that the surgery is finished, regular monitoring and follow-up are essential. After surgery, your husband will be closely watched in the intensive care unit  and will be transferred to a regular room once stable. There will also be plenty of medications to help with pain and prevent infection. The symptoms he is feeling now maybe effects of these medications. However, it would help also to inform his doctors about these symptoms. Recovery and post-op period are the next phase that you need to prepare for. You need to be strong and have plenty of patience at this time. Your husband is very lucky to have you by his side. Take care of yourself also. Stay positive and hoping for your husband's very speedy recovery.

[shay_nicole]

Well, My husband had his surgery. He is doing so well! it lasted about 12 hours, and they removed 99% of the tumor! I was completely amazed with the outcome, and with how quickly he is healing and recovering. As far as the surgeons can tell, there is no permanent damage. The only things that we are concerned with is his hearing and having no taste. When they went in for surgery they tested his hearing, and couldn't get a response from his nerves in his right ear, and after surgery, they couldn't either. Other than that, He cannot taste anything. that's not something the doctors mentioned at all, and my husband just mentioned it to me today, after being home for 3 days. is that something that is common with brain surgery, or could it be because he has partial temporary paralysis on his right side of his face? the paralysis isn't even noticable really. he just says it feels a little numb. either way, the surgery went well, and we're both very happy. there were very few set backs so far, he had a slight CSF leak from his nose at one point, and the drain had come out partially in his sleep, so it leaked from his back as well, but other than that, he was fine! thanks for all of your support through all of this! it means a lot to me.

[Dr Santos]

Hi,
I know how hard it is to be in your position right now. But be strong and have faith. Be there for him and I know there are many emotions you are both feeling right now. The size of the tumor is responsible for the debilitating headaches and other symptoms he is experiencing right now. Inform his attending physician about any symptom he is experiencing for management as well as for updates. The surgery is less than a month away and the anxiety of waiting is sometimes harder. A support group is really important at this time. If he does not like to tell his family about his condition, ask around in the hospital or ask his doctor if there are support groups in the community/hospital. You can always drop me a note if you need somebody. Will be praying for his surgery and complete recovery. Take care.  

[shay_nicole]

Hi. I know it's been nearly a month since I've posted anything regarding my husband's condition. we've had a few more appointments and we have a surgery date finally. We found out that his tumor has been growing since he was born. They said it was a tumor of skin like tissue that for some reason formed between his brain and his skull, instead of on the outside of his skull. we got to really look into the MRI and it was terrifying. His tumor is pushing his brain stem to the right and his brain forward.It is about three times the size of his eyeball...his vision and hearing are becoming more and more disturbed, and he's getting debilitating headaches within the last few days. His surgery is scheduled for December 13. less than a month away. I was just wondering if the headaches should be brought to the attention of the surgeon....any input on the recent info or anything would be greatly appreciated. It's very hard for me to grasp hold of everything right now, and its hard to cope . he isn't allowing me to tell anyone including our family. no one knows about his condition but me, and it's hard not having anyone to talk to  about it... he's pretty quiet about it...

[Dr Santos]

Hi,
The best procedure would depend on several factors such as your husband's medical history, experience of the surgeon, the type of tumor present, and the evaluation of his doctors. As much as I want to help which way is best, his attending has a greater say on this matter. Ask for clarifications from his doctors if the medical terms are difficult to understand. Be strong and remember that we are here for you.

[shay_nicole]

So my husband had yet another appointment. The surgeon told him that the tumor is wrapped fully around his brain stem... they told him his military career was over, and he has to have surgery as soon as possible. we have to meet with the surgeon Oct. 29th. they gave him three options as to how to do the surgery. one was going through his ear and drilling straight through, where it would knock out his hearing on that side permanently. also, they could go through his throat, but mentioned something about spinal fluid leaking or something? I'm not sure what the risks with these are at all. they also said they could go through the back of his neck and behind his ear, and didn't say anything about risks with that one. Is there any way to tell which procedure would be best?

[Dr Santos]

Hi,
How are you?  Surgery is indeed very risky since the brain stem controls a number of physical functions including breathing, heart rate, muscle movements, and involuntary tasks such as digestion. Any damage to the brain stem can also interfere with the function of the brain stem and spinal cord. This is why a referral to another neurosurgeon is warranted, if surgery is an option.  Radiation treatment can also be done to attempt shrinking the tumor. Do keep us posted on the recent surgery appointment. Hang on and if the explanations by your doctors are not clear, request for further clarification to have a better understanding of the situation. This will also ease any anxiety on your part. Take care always.

[Gina04]

So sorry you guys are having to go through this.  It was hard for me to go through brain surgery when I was single.  I can only imagine how you are feeling right now.  Praying for both of you.

I'm going to send you a message with a link.  The page talks a little about craniotomies and different ways they removed brain tumors.  I had a craniotomy done but my surgery was more in the temporal area than the stem.  Not sure how similar this would be.  If you need to vent, have questions, etc., feel free to message me.

[shay_nicole]

Well, my husband had his Neurosurgery Consultant Appointment today.... It is a tumor ( they didn't say what kind, but they don't believe it is cancerous) It is a tumor... touching his brain stem... They said that he needs surgery and they would be getting ahold of him within a week or so because the surgeon he talked to today said that isn't is area of expertise per say, so he will be reaching out to another surgeon in hopes of helping my husband and preforming the surgery... I was just wondering... how dangerous would that kind of surgery be? working so close to the brain stem. they said that they couldn't cut it out... so what else would they be doing? the tumor has been growing for years now...they also said that it is risky, but wouldn't give us any details at all.

[shay_nicole]

That is VERY nice of you, but unfortunately we are located in the indiana/kentucky area. :( Thank you though.

[Gina04]

If you are in the South Carolina, Georgia, Florida area, let me know.  I can contact the University system where I had a lot of my testing and both of my surgeries done and see if there are any special programs that would make it affordable for him to be seen there.

[Dr Santos]

Hi,
Thanks for the update. It can really be frustrating if questions are left unanswered.  However, it is best that you wait for the appointment with the neurosurgeon so that he or she can explain better because he is in a better position to do so. Hang on and do keep us posted. Best regards.

[shay_nicole]

There is a way, but it's a very expensive way. :) he has a few appointments lined up so hopefully we will be finding things out soon.

[Gina04]

Is there any way you could go to a non-military facility?  Not sure where you live, but I was very impressed with my neurosurgeon and the facility that I had my surgeries at.  I would definitely try to get my friends/family to go there if they needed a neurosurgeon.