My son started having severe chronic headaches 11.05.2007.

1. how old is your son?
2. since how long is he having this problem?
3. how frequent does he have these episodes of headache?
4. does he ever have nausea or vomiting with the headache as well?
5. what are the tests that he has had for his condition?
6. you mentioned that he has been to a neurologist... what was the possible diagnosis (if any) suggested by the neurologist?

regards

1. He is 28 years old
2. The severe headache and vision problems since November 5 of 2007 - almost 4 months.
3. The headache is constant with spikes of intensity.
4. No nausea or vomiting
5. One MRI and a neck X-ray back in November and blood testing. I don't know if the MRI was with contrast or not.
6. At first his epilepsy neurologist (he had a temporal lobe lobectomy in May of 2007) thought it was depression and tried two different anti-depressants that didn't work. He also tried increasing his topamax, didn't work. He also tried Midrin - didn't work. Then he went to a neurologist specializing in headaches. He took him off the anti-depressants, decreased his topamax by 50 mg. - now on 150 mg am and pm, and gave him a prednisone pak - didn't work.
Oh, also, within the last 2 months, he has had three incidents at work when he just "walks off". It's like he's sleepwalking in the daytime. He doesn't have seizure symptoms or any confusion when it goes away and he "wakes up", not knowing how he got where he was. They have lasted about 10-15 minutes.

Dear Customer (name blocked for privacy),

Dr. Zia has asked me to lend an opinion to the symptoms your son is showing, especially most recently with the headaches and visual disturbances, which seemed to coincide so a unifying diagnosis would be ideal. Now we add in to this 4 month headache and visual disturbance a dissociative state for the past 2 months where he will walk away from work for no reason, but upon reorienting him, he displays none of the classical post-ictal / post-seizure confusion or cloud. I understand that he has undergone a temporal lobectomy in May 2007.

• Can you tell me which temporal lobe was operated on?
• Is your son right or left handed?
• Other than Topamax, is he on any other current medications (please list names and doses)?
• Aside from the history of epilepsy, does he have any other medical or psychiatric history that would be important for us to know?

Problem 1: Headaches/Diplopia

New onset, now 4 months, associated with a constant pain and occasional sharp spikes of pain, along with episodic gaze-induced vertical diplopia (double vision). This could be a migraine headache with cranial nerve palsy. Cranial nerves that cause VERTICAL diplopia are IV, III, and VI (VI is more often horizontal than vertical). There are also unusual conditions that cause vertical gaze diplopia including internuclear ophthalmoplegia (INO) which can be closely mimic'd by a IIIrd nerve palsy with predominant medial rectus weakness. Many cases of INO (~70%) are associated with Multiple Sclerosis or Cerebrovascular Disease.

What else? Myasthenia Gravis, Thyroid ophthalmopathy, Ophthalmoplegic migraine (mentioned above, but must be a diagnosis of exclusion), Guillain-Barré Miller Fisher Variant ... this one is an acute inflammatory demyelinating process that can affect the extraocular muscles and reduce deep tendon reflexes diffusely.

The list is long. It's so long and involves such delicate and super-subspecialised examination that about the only specialist I can recommend to sort this out, and it HAS TO BE DONE in person, face-to-face, is with a Neuroophthalmologist, especially if more than one cranial nerve is involved. It required a detailed and precise Neuroophthalmologic examination and perhaps additional studies.

I would recommend to you one of two Neuro-ophthalmologists are at RUSH Presbyterian St. Lukes in Chicago:

• http://snipurl.com/20ko2 ... Thomas R. Mizen, MD
• http://snipurl.com/20ko6 ... Janet C. Rucker, MD

I can also recommend you to my alma mater, The Mayo Clinic, department of Neuro-opthalmology if you wish:

• http://www.mayoclinic.org/bio/12508152.html ... Elizabeth A. Bradley, MD
• http://www.mayoclinic.org/bio/10027378.html ... James A. Garrity, MD
• http://www.mayoclinic.org/bio/11449829.html ... Jacqueline A. Leavitt, MD
• http://www.mayoclinic.org/bio/10160981.html ... Brian R. Young, MD

I hope this information helps. I feel that the appropriate specialty to examine your son's very complicated symptom complex is a Neuroophthalmologist.

Thank you for visiting JustAnswer.com's Health Information. I hope that all of your concerns have been addressed and that your experience here was positive and helpful. If you have a new or different question, please don't hesitate to come back or submit a new question. It has been a pleasure helping you. Your FEEDBACK is very important to me.

Kindest Regards,
Daniel Nelson, MD

Edited by Daniel Nelson, MD on February 28 2008 at 12:27am

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I would like to add some info 1st to get more of your opinion because this is more than his other drs. have offered.
1-He had a left temporal amygdalahippocampectomy (sp?) May 2007
2-He also takes Tegretol and no other medications. He lives with us and I am certain of this
3-He has never had any psychiaric problems. He graduated from college with a BS in Art and a minor in Computer Sci. He hols a full-time landscaping position and maintains 3 local web sites. before all the pain, he was interacting easily with others - His pain has this more difficult - I didn't mention that noise bothers him,too.

Finally - would you have any doctoral recommendations in the St. Louis, MO area? -and is there any urgency to his getting help?

Also, I would like to add that I will gladly pay some more than I originally indicated. You have already helped more than we have gotten.

I forgot to mentio also that 10-22-07 before the severe headaches started on 11-05-07 he had raised up rather hard and hit his head on the bucket of an unloader. He did not lose consciousness or break the skin, but from his co-workers - they say it was very hard. He is not one to complain and will usually just try to put up with it, hoping it will just get better and that's why I'm the one doing all the searching.

Dear Customer (name blocked for privacy),

Thank you so very much for the additional information. Your spelling was right on the nose! The potential head injury is very closely temporally associated with the onset of the headaches and diplopia, isn't it? The headaches, light, and sound sensitivity very much fit with the pattern of people suffering migraine headaches, and raise suspicion for the ophthalmoplegic migraine diagnosis mentioned in my first post, however, ophthalmoplegic migraine must be the diagnosis of exclusion. This type of ophthalmoplegic (eye muscle paralysis) migraine itself, is becomming more seriously studied and intervened because some researchers are showing a correlation between this condition and demyelination of critical cranial nerves.

I can recommend a couple of Neuro-ophthalmologists at WUSTL (Washington University, St. Louis). Not the greatest part of town, but these folks are also top-shelf. I do feel an urgency to this, because it seems his symptoms have progressed and expanded with the walk-about states over the past two months. He's a bright young man and I have every intention of helping you to help keep him that way.

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Thank you so much for all your help. He has talked with his headache neurologist and his seizure neurologist. Neither has asked to see him again. The headache neurologist, who is also trained at the Mayo Clinic in Arizona, has added gabapentin to his regimen of medicines. The seizure neurologist has only had him take a blood test to check his tegretol and topamax levels. How hard should I push to have him seen by a neuroophthalmologist? And should I wait to see how the new medicine works?

Gabapentin is a good seizure medication and can also help with prevention of migraines. Recall that one of our concerns is ophthalmoplegic migraine (a migraine that paralyses the extraocular muscles that control eye movement). As we are beginning to see, even ophthalmoplegic migraine may carry a risk of becomming an inflammatory demyelinating process ... something that gabapentin doesn't address.

I would push hard for him to be seen by neuro-ophthalmology at either WUSTL, RUSH, or Mayo Clinic, Rochester. I feel that this is much more in their (neuro-ophthalmology) territory than Neurology alone. Tegretol levels are useful, the levels of Tompamax are not clear in their meaning or "therapeutic range." These shotgun approaches really need to be turned into sniper shots ... i.e. stop pulling out the medicine cabinet and lets look at specific pathology, and target therapy directly at the cause. This is me, though, I am a hunter and not a gatherer. 100 physicians will likely give you 25 differing opinions and 10 new medication approaches and 8 different "tests" ... but there is nothing that beats seeing the patient, face-to-face, and laying on of hands, as we say. I would like for his eyes to be observed during an episode of diplopia (double vision), and while he attempts to look in all other directions as well. If you have a nice digital camcorder, this may be something useful to record during a diplopic episode. An EEG preceding the Neuro-ophtho appointment would be useful as well.

Kindest Regards,
Daniel

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Thank you for verifying what I've been feeling that "These shotgun approaches really need to be turned into sniper shots ... i.e. stop pulling out the medicine cabinet and lets look at specific pathology, and target therapy directly at the cause." It's exactly what I've been feeling. I will let you know what happens.

I have contacted his seizure neurologist to ask for a referral to the neuro-ophthalmolohist at WUSTL - same hospital. He would not at this point, but said to see an ophthalmologist 1st. My son has an appt. next Tues. with one. Also we found out his last blood test showed an elevated white count and his neurologist recommended he see our PCP about this. I pray and wait.

My goodness, I cannot believe he wouldn't give a referral. I'm sorry to hear this. I feel very strongly that he would be best served by a physician in neuro-ophthalmology than either one alone. Thank you for the update. I will pray as well. I feel completely helpless in this process, and wish I could do more. Is he still having episodes of double vision, headaches, and any more events of him walking away unexpectedly?

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Thank you for your reply. He is still having episodes of headaches and vision disturbances. He has had no walk-about episodes. His appoint with an ophthalmologist is Tuesday. He has not yet made an appt. with our PCP. I did receive a copy of his blood test of 2-28. The WBC was 14.5. Also, both on this blood test and one on 1-22 his neutrophil percents were 85.7 and recently 71.8 and his lymphocytes on 1-22 were 7.2 and this time 18.4. I was wondering if these could mean anything. Again thank you for your concern. Today 03-09, he had a couple of times when he lost memory of earlier events of the day. Then he was able to piece it all together, bit by bit. The one time he said it felt like his head was exploding.

Edited by Customer (name blocked for privacy) on March 10 2008 at 12:22am

The WBC total is slightly elevated. The neutrophil count has improved more toward a normal percentage (although this varies from lab to lab, 70% neutrophils is usually the upper limit of normal), while the percent lymphoctyes seems improved and back into normal range (at least by most lab ranges of 15% to 45%, or so). The elevated neutrophil percentage on 22 January, epecially if the total WBC was elevated or contain "Band Forms" (which are premature neutrophils) is suggestive of a bacterial infection. In general, neutrophils and premature band-neutrophils fight bacteria, and lymphocytes fight viruses.

Perhaps they should consider a lumbar puncture to test his CSF for signs of infection, inflammation, or demyelination ... and measure the opening pressure as well. A repeat MRI would not out of the question, either, to evaluate for interval changes. I sure am worried about this young man, and I wish his doctors would take an aggressive approach in getting to the bottom of this. I don't feel that Ophtho or Neuro alone is sufficient.

Keep me posted at any time. I pray all will be well on his Ophtho appointment. Thank you so very much for the updates, it means a great deal to me. /Daniel

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Thank you for the information on the labs. Especially, thank you for reassuring me that I am not the only one who thinks they need to be treating this more aggressively. I think they feel it is all just part of the after-effects/healing process from his temporal lobe surgery. However, he seemed to be doing so much better until November of 2007 and the surgery was in May of 2007. It just doesn't seem to me that what is going on now would be related. When he had his first MRI, the surgeon kept saying he didn't see anything wrong from the surgery.   Is there a chance that they were only looking there, and not considering other possibilities? I will let you know what happens at the ophtho appt. However, when my son goes by himself, as he will have to tomorrow, I often don't get a lot of feedback from him. I really appreciate your concern, help and prayers.

Also, is there a way to reply and pay you for your time, both? I'm a little new to this, and I want to do this correctly.

I suspect that the post-operative MRI(s) would have been whole brain MRI's, but they may have done special imaging techniques only involving the operative site. MRI is excellent for depicting the brain anatomy.

You should consider asking your son sign a release of information form with his physicians (and possibly hospitals) in order for you to be able to talk with them directly, if this hasn't already been done. This way, you could have direct access to medical records and be allowed to talk to his physicians at any time.

I really don't want you to feel like you have to pay more or again, since all we are doing is discussing your original questions and concerns ... and as far as I am concerned, you already paid for that. Really, all that is going on right now is that you are keeping me appraised of his appointments and what the other physicians are saying -- and I appreciate that so very much.

This discussion thread is always available to you via the link in the emails you receive or once you have signed in, make sure you have scrolled to the top of the page and click on the "My Questions" link in the upper right corner of the JustAnswer.com website.

I look forward to hearing from you soon. My best regards to you and everyone in your family. /Daniel

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A quick update - my son had an appointment with the ophtho yesterday. He set up an appointment with my son with a neuro-ophtho at Barnes - Dr. J. B. Shepherd - what we've been wanting all along. Our PCP is waiting for two weeks before he does another blood count to see if it goes away on its own. Our epilepsy neuro's nurse called to check on him - concerned about elevated WBC and possibly causing seizures. My son went to work as usual.

After asking him about his appointment yesterday, he couldn't remember exactly what the doctor said, but just knew the bigger picture that the ophtho felt he needed to see a different doctor. I plan to go with him on that appointment.

I did have a medical power of attorney for my son when he had his surgery. I agree it would be good to have another at this time to discuss his records. Most of his doctors right now are willing to do so, but I am trying to allow him some privacy, too, since he is 28 years old. It's a hard line to know when to cross. Thanks. I'll let you know if anything else comes up. I just wanted to let you know that they are going the direction you advised on from the beginning - just more slowly.

Thank you very much for the update. I am SO pleased he will be seeing Neuro-Ophthomology. The elevated WBC is concerning, I agree. Sometimes in Grand-Mal seizures we will see increases in the WBC count because the extreme stress of the event causes white cells to release themselves from the wall of the blood vessels -- this is called demargination. Since his sezires are not Grand-Mal type, I have a hard time writing it off as simple demargination. Just to make sure I understand the counts and their respective dates, correct me if I am wrong:

22 January, 2008:
WBC Total = ????
Percent Neutrophils = 85.7%
Percent Bands = ???? (if not listed, it's usually 0)
Percent Lymphocytes = 7.2%
Were there any other comments noted on the report?

28 February, 2008:
Total WBC = 14.5 (elevated)
Percent Neutrophils = 71.8%
Percent Bands = ???? (if not listed, it's usually 0)
Percent Lymphocytes = 18.4%
Were there any other comments noted on the report?

I think your son will be understanding about a release of information or medical POA. This isn't a situation of a nosey mother wanting information just to keep tabs on him ... this is all about your love and caring for him and looking out for his best interests.

I am glad he's seeing Dr. Shepherd. My heart will rest a little easier knowing that this appointment is in the works, and it can't come soon enough. I am sure you feel the same way times a million. I am so thankful for you keeping me appraised. As always, you are all in my prayers. Write any time.

/Daniel

Edited by Daniel Nelson, MD on March 12 2008 at 11:01am

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In answer to your questions:
22 January, 2008:
WBC Total = ???? - 8.7 K/mm3
Percent Neutrophils = 85.7%
Percent Bands = ???? (if not listed, it's usually 0)I didn't see any "bands", but there were: Mono - 5.3, Baso, 0.1 and Eos - 1.7
Percent Lymphocytes = 7.2%
Were there any other comments noted on the report? Nothing really. It did say his Anion Gap was low at 5, Osmolality was slightly low at 274 and his A/G Ration was high at 1.9.

28 February, 2008:
Total WBC = 14.5 (elevated)
Percent Neutrophils = 71.8%
Percent Bands = ???? (if not listed, it's usually 0)Only the others - Mono - 8.3, Baso - 0.3 and Eos 1.2
Percent Lymphocytes = 18.4%
Were there any other comments noted on the report? None at all

As for the epilepsy neuro's concern about the white count, I think he was thinking it might be something else other than the result of a seizure and concerned that infection sometimes causes seizures. At least that was my inference from my phone conversation with his nurse.

You are correct about my feeling so much better he has the appointment on the 31st with Dr. Shepherd. I did talk to the neurologist and he basically told me that he could see nothing wrong with my son's eyes, just a little deficit in a section of side vision that was expected from the surgeryhe had. He saw no damage in the eye or muscles and referred him to Dr. Shepherd since he felt my son's problems were beyond his knowledge - for which I greatly respect him.

I will let you know of anything new. Again, thank you for listening and for your prayers.

You are so kind for keeping me updated. I agree about the concern regarding the WBC elevation, infection, and seizure due to infection or fevre. Is there a plan to repeat the CBC soon? If still elevated, I would pursue looking for a source of infection.

I am glad the ophthalmologist referred your son along. We all need to be aware of our limits and not let egos or territory or who knows what el$e get in the way of caring for people. I am always here, and honoured that you are so thoughtful for keeping me appraised. /Daniel

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This time - I do have a question - still related to this ongoing problem. My son has been having a great deal of hair loss, too. I thought it had gone away, but today I found out that isn't the case. Also, when all of this originally started, he was extremely cold all the time even when others weren't, even shaking at times. This lasted about 2-3 months. However, now, he is warmer than most others. In addition, he seems to become stressed more easily than before, and when he does, he breathes hard. I thought originally it was just frustration with not finding words, etc. I realize, too, that this is sometimes a result of the surgery he had on his temporal lobe. If he were a woman, I would describe it as menopausal or PMS symptoms. Is there any chance he could have a hypothalamus/pituitary problem? He did have his thyroid checked in January and it was okay.

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Thank you. I think they did a free-T4 earlier. I will look over all you have mentioned and discuss this with my son and his PCP. He took ACCUTANE when he was in high school. I don't suppose this would have anything to do with it. Maybe it is mainly stress. I will probably not write again for a few days. Thank you for all your time.

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Thank you, once again. I've been reading more closely your last two posts and am wondering if there is any endocrine problem. My son is actually losing weight and has insomnia a lot and his blood pressure tends to be on the higher side rather than the lower side. I do know that our doctor had a free T-4 test done in January, and said that it came back OK. The other tests you mentioned (TSH, FSH, LH, prolactin, testosterone levels, and cortisol levels) would these show anything different? He is scheduled to have a blood test on March 25 to recheck his WBC, and I could perhaps talk to our PCP about adding any of those. However, please understand, that sometimes as a lay person, it is difficult to request such things from doctors. Some in the past have tended to question where I'm getting information, or who am I to question what they're doing, etc. I could more easily do so if it were me rather than my 28 year old son. If you think it is important, though, I will do my best to get him to add these tests on to the test on the 25th.

My son had a bad day today. Prior to this, he seemed full of energy - worked on web sites, cleaned his area of the house, washed clothes, etc.   Today he came home from work and basically went to sleep in the dark. I can tell his head is hurting although he said he was fine. I begin to think that maybe I am just worrying too much and it's migraine - but my intuition tells me differently. Thank you for listening.

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I spoke with my son's PCP's nurse about the extra tests. She originally gave us orders for them, but our doctor had her call later to make an appointment. He is correct in stating that he needs to have a diagnosis to put with the tests or my son's insurance may not cover them. In addition, my son has his own individual insurance which has a very high yearly deductible. The nurse mentioned that these are very expensive tests. He is to see the doctor Wednesday evening.

My question is, what symptoms specifically does he need to be sure to tell our PCP, and do you think it is worth going through all these right now or should we perhaps wait until after the neuro-ophthalmologist appt. and just have a WBC test right now?

Happy Easter to you.

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I just wanted to update you on what is going on. My son had an appointment with our PCP 3-26. He was very attentive and listened to all our concerns. I stayed for the appointment. He ordered the following blood tests: CBC, Occult Blood, TSH, T-4, FSH, LH, ADH, prolactin, testosterone and cortisol levels.

He also suggested that we may want to have another doctor take a "fresh look" at everything. He was going to have another MRI done, but we are waiting until after my son's appointment with Dr. Shepherd (the neuro-ophtho) on Monday. I was heartened by the fact that he listened so well.

In addition, on Tuesday, the 25th, my son's level of headaches increased again. I think maybe it helped for the doctor to see him when the headache was so bad and how he had trouble finding words. We forgot to tell him about the "slee-like" episodes he had, and the doctor felt his head (he has shaved his hair) and I wondered that he did not complain, but I found out later that it really bothered him to have his head "gripped", so to speak.

Anyway, I just wanted to update you so that I did not have so much to write at one time. If you have any comments, please let me know.

Once again, thank you for listening.

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My son had his appoinment with Dr. Shepherd today. They did a field vision test, checked his distance vision, eye pressure and tear production and looked in his eyes and asked a lot of questions - all of these done by a technician and a resident. Then Dr. Shepherd came in. He discussed this with us and said basically the following:
He wondered if perhaps my son should have an EEG done since he had none done since his surgery last May. He said he saw no eye damage and gave 2 possibilities for the headaches 1) migraine 2) a combination of residual effects from the surgery and occult seizure activity aggravating the trigeminal nerve - also mentioned post-traumatic brain injury and residual seizure activity

He said he would call my son's headache neurologist - Todd Schwedt who is also at WUSTL and who we were to call today to report on how his headaches are doing. We did so later today, but Dr. Schwedt's office just said all he did was to report that there were no problems with the eyes and never said anything about the EEG. I only spoke with the nurse and she asked to talk to my son and then said they would get back to us when he told her that the headaches were no better - the headache is always there and spikes. He also told them that they are actually worse than before.

In the meantime, our PCP's nurse called with results of his blood test and said everything was normal, but the ADH test was not back yet. She said the cortisol was even on the low side of normal when I asked specifically about it.

My 6-foot son was almost in tears at WUSTL after the appointment. He felt they basically told him he is fine. All his neurologists at Barnes basically concur that it is migraine. His first MRI was done there after the headaches began in November, so they don't think there could be anything else.

So, could I recap symptoms? (from him)
1) Headaches - constant and at times severe - severity progressively worse over the last 5 months. Located mainly at site of operation, and then may move to right top and sometimes at the back of the head - Head is very sensitive to the touch. And today he said that they become worse with physical activity - ie unloading a truck of heavy landscapint materials
2) Vision problems - everything with a pattern seems to bulge out and part goes up and part goes down - with eyes closed pattern stays and causes lightheadedness
3)Sometimes offf-balance and lacks coordination - not necessarily when headaches are at their worst - all the time
4) Troube finding the right word - especially names of people and things and also some auditory comprehension problems (my daughter-in-law, a speech-language pathologist thinks perhaps transcortical sensory aphasia but he hasn't been tested for this)
5) Short-term memory loss has worsened
Sensititivy to light - after a time, eyes burn, pain above and below eyes (not always with the most severe headache)
6)When trying to talk become very frustrated with himself and breathes heavily

Having said all this, and I would like to reiterate that he did not have a history of migraine before the surgery, nor did he have these debilitating headaches 3-5 months after the surgery, and nothing so far has helped, plus he has never been one to complain about pain and this pain stops him in his tracks, so to speak.

Where do we go from here? Do we talk to some other neurologists? Do we ask for an MRI? If it comes back negative, then what? Do we ask for an EEG? What about ICP?

On the upside, he bought a journal today to keep a headache journal. He bought a case for his computer. I'm trying to keep him positive, to think about being tested for the aphasia to see if that would give some insight. SIUE - where I used to work would be able to do this for a low cost. Does this sound like a good idea? He's thinking he may have to quit his job and find something else. What do you think? And, thank you for listening. I feel sometimes that the doctors look at me as a "worrying" mother who over reacts and is "emotional". I am an educated woman and a researcher. I am also a problem solver and I am trying very hard to figure out this mystery. I have read articles that talk about Gapapentin being a good medicine for migraines, especially those caused by nerve rather than vascular problems. Maybe Dr. Schwedt is doing it all correctly and I've just read too much with too little knowledge. I just somehow feel that all the pieces don't quite fit.

What is concerning to me is the newness of the headaches along with additional new symptom vertical diplopia (double-vision) and the walk-about episodes. Of course, the other symptoms of incoordination, word-searching, receptive language concerns, memory loss, and the fact that a young man would isn't a complainer is now stating that something is wrong.

• Was the vertical diplipia mentioned?
• Was the episodes of walk-about mentioned?

The EEG is a very reasonable next step in the evaluation. It will be good for evaluating the surface electrical activity, but I do have concerns as to whether this will pick up potential epileptiform or abnormal activity in the deeper regions of the brain and brainstem.

• Was any mention made of testing brainstem evoked responses (somatosensory, visual, auditory)?

While brainstem evoked responses have been replaced by imaging modalities like MRI, MRI and most imaging studies remain an anatomic study, while evoked responses show correlative functional data. Evoked responses are also of potential utility in studying patients with classic and common migraines.

Speech & Language Pathology is also quite reasonable. It will help to delineate and organise his receptive and expressive difficulties, quantify and qualify them, and suggest potential pathways of abnormality that may be back-correllated to the surgery, EEG, MRI, and (maybe) brainstem evoked responses. This way, his anatomy and physiology will be examined in a succinct and thorough manner.

I don't know much about the languages centre at SIUE. Does your daughter-in-law know? If the SLP specialist is well-trained and credentialed, I think it should be fine. I wish I could tell you one way or another.

It seems like we should have seen a response to gabapentin (Neurontin) since he was started on this sometime in late February. It has both antiseizure and migraine-prophylaxis effects, yet his symptoms don't seem to be improving from any perspective from what I understand. Correct me if I am wrong. I don't think that your emotions, which are inevitable, are blurring the big picture. You seem analytical and objective as you convey your thoughts and concerns to me. Every mother has emotional investment, but only the ones with your knowledge are good at setting them aside while assessing the situation and weighing all of the information presented. If you ever perceive that a physician is seeing you only as the worried mother, speak your mind and set them straight. You're a caring mother and approach this from a research and analytical standpoint. Full stop.

EEG, SLP, and discussion with his neurologist or PCP about the utility of a Brainstem Evoked Response study seem to be reasonable next steps. I glad to hear that the WBC has normalised and that the other pituitary and thyroid tests are normal (pending ADH). ICP increases should have been observable on the thorough ophthalmologic examinations ... as the cup-to-disc ratio changes and the disc takes on a characteristic buldge.

I am glad to hear of his taking involvement in journaling the headaches. Regarding the job, I can't say for sure, but it seems like having a purpose and direction from day-to-day is a good thing for him. If he can find another job easily, then I doubt his self-worth will suffer ... but we men, sometimes too often, measure our utility on this Earth by our occupations rather than by all else with which God graces us. If he quits his current job, and has a difficult time finding a new job, I am a bit concerned about depression setting in given all of these other circumstances. What are your thoughts on this?

Thank you so much for the updates. Let me know, at your leisure, what you think in response to the couple of questions I have strewn in and about this response (in bold). /Daniel

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First of all, let me say I like your new picture better. You hardly look like the same person without the facial hair - and younger.

Now to your questions. When you ask of the vertical diplopia was mentioned, what he told the resident at the appointment was that when he looked at patterns, part of it seemed to bulge out (like 3-d), and then some seemed to move up and some down. He also told him that objects on a wall would do the same thing. He talked about when he looked at things, it is like a TV screen when it's static, overlaid over other things.

I don't think my son mentioned the walk-about episodes. He was trying to concentrate mainly on the eyesight problems.

All that was mentioned my Dr. Shepherd was what I mentioned before as to what he thought may be causing the visual disturbances/headaches. He also said he knew Dr. Schwedt (the headache neurologist) and that he would talk to him.

Yesterday, Dr. Schwedt's office called and my son is to increase his gabapentin by 100 mg a day each week for three weeks, and then let them know how he is doing. He is doing so, but I know he feels more should be done.

As for the brainstem evoked response testing, nothing was ever mentioned about that, just the EEG.

My son has an appointment to have his aphasia tested at Southern Illinois University Edwardsville on April 17th. My daughter-in-law is familiar with the person who is doing the testing and she says she is good. I know that the department is considered one of the best in the nation. We would have students nation-wide coming to our university for that particular program. Even if it doesn't help us find what is causing the headaches, they can help him to cope with the aphasia, I'm hoping.

As for the job, he went to talk to them yesterday and told them how he's been feeling, that he may be back to work any day, but maybe not at all. He also mentioned that he may be going to see other doctors. They were very supportive and told him that the job would still be there for him whenever he wanted to return. In the meantime, he is working on his one paying website (a local realtor) and our church's web site, plus a friend's personal website (he pays him a little, too). As for his becoming depressed, I think he could get "down", but he's always been one who actually likes doing things alone, is quiet, a thinker, etc. I do think he needs some interaction with people, though, too, and especially people other than his mother and father. So far, so good, though. He says he gets "angry" over irritating things more than he used to, but compared to my other son, I'd say he's actually about normal, now, for a 28-yr.-old male. I think he's just showing his emotions more than he ever has before.

I do not know if I don't understand what he's telling me all the time, or if he doesn't remember things sometimes, but occasionally he will tell me one symptom and when I mention it later, he'll look at me like "What do you mean?". Anyway, I do know that bending over and bending over while lifting something definitelly aggravates the headaches.

My mother-in-law had a screw in her ankle from an accident that she said began to bother her and give her pain in her toes when it began to heal and they took it out - relieved the pain.

My daughter-in-law had a brain biopsy and has a screw in the back of her head that she says hurts more now than right after the surgery. (but this is a whole other discussion)

Is it possible that whatever they used to hold his bone in place in his skull is healing and causing shifting/pinching of nerves/?????? That might account for the delay of headaches?

In addition, could they have missed something with the MRI in November? My husband had a CT scan and a PET scan several years back when we were told that there was a 98% chance he had lung cancer. Well, guess what, he didn't. It just seems to me that it's worth another look, just to be sure.

Thanks for listening.

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Yes, my son's employers have always been great. The owner had a brother who died of a brain tumor, and I think this is part of the reason, besides the fact they are very understanding, caring people.

I agree about the creative spark. He is really very gifted as an artist, but he wouldn't probably agree with me. He's very humble.

I do not know the extent of the MRI in November. That is something we should probably ask. If he has any other MRI, it will be ordered by or PCP or a different set of neurologists if we decide to have someone else see him that our PCP will suggest. If the MRI is done, I will be sure to have your suggestions with me and ask.

The goal for the neurontin right now is eventually 600 mg total for the day. That is in addition to a total of 1200 mg of Tegretol daily and 300 mg of Topamax daily. It does seem that the Vallium is helping him to get some sleep, too, and that is another good thing. If I have learned anything in this life, a person needs to have patience and faith while doing all one can do.

Thanks again. Let me know if you have any more ideas/suggestions, etc. and I will do the same. In the meantime, I want to give you a small amount of payment once more. You are helping me by being a sounding board as well as giving me invaluable quality information.

Hello again. We met with my son's PCP on Wednesday. All the blood tests came back normal. I do not have any copies of them. Currently our PCP is looking into another neurologist for son to get a "fresh look" at his problem. In the meantime, the headaches seem worse at times, but the vallium our PCP gave my son seems to be helping his sleeping.

Along with the "moving objects" in his vision, we have found web sites about "visual snow". He says that he has always had this, but now it is becoming much worse.

As he keeps his diary, he talks about a "crackling" sound in his skull. I found something about "fungus of the dura mater" - is this a possibility? Wouldn't it have shown up on the MRI?   

I have obtained a copy of the MRI report from NOvember 19, 2007. It was a multiplanar, multi-weighted MRI of the brain and brainstem without and with intravenous contrast.

FINDINGS: Surgical changes are seen from the prior left amygdalohippocampectomy. apparent diffusion coefficient (ADC) maps reveal no areas of low ADC to suggest hyperactue or acute cerebral infarction. The T2*-weighted sequences reveal no evidence of acute or chronic hemorrhage. On the sagittal images the midline markers are unremarkable. The corpus callosum is normal in shape and signal intensity. The pituitary and sella are normal. The posterior fossa is unremarkable. The brainstem and craniocervical junction are unremarkable. There are no areas of abnormal contrast enhancement. The superior sagittal sinus demonstrates normal venous flow. The ventricles are normal in size and position without evidence of hydrocephalus. The scalp and calvarium are normal. The visualized portions of the orbits, mastoids, and paranasal sinuses are unremarkable. The upper cervical spinal cord and spine are normal. Normal flow voids are demonstrated in the carotid arteries and basilar artery.   
IMPRESSION: 1. Expected surgical changes from the prior left amygdalohippocampectomy.

So.....reading this, one would be led to believe "it's all in his head" so to speak. I guess that's what they are going on. I can't help but wonder though why he was getting better from May through October and people even commented on how much more sociable he was than prior to the surgery and they were glad to see him doing so well. He did say he had some headaches, but nothing like what hit November 5th. Is there anything this could be that the MRI would not show? Is this all from his surgery, and if so, I think he's wishing he would have just gone on with the seizures.

We are to hear from our PCP on Monday about other neurologists to see. At this point I wonder if it is worth it to see someone else. If he's told again that there's nothing there, I think it will devastate him. He's already worried about whether he will ever feel better again, or work again, etc.

Any thoughts/suggestions are appreciated - especially if you can think of something that might be causing these headaches and vision problems that would not be detected on an MRI.

I haven't heard from you lately. I just wondered if you were alerted to my last post.

Thanks.